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Success Stories


Information on this website is not to be used as medical advice 

Permission has been given to print the following success stores.  These stories have been written by many parents who wish to share their story about the gluten and casein free diet and how it has improved the life of their child. Our gratitude is extended to everyone involved with The GFCF Diet Support Group.  They have taken the time and made the effort which has provided a dedicated and caring support system for every parent who wishes to use Dietary Intervention.

It is important to know that all children are different and the diet may not work for everyone. We believe that all children with ASD should try the GFCF Diet.  Some will respond to the diet more quickly than others.



Child's name : Caleb
Age: 33 months
On diet for 2 weeks
Mom: Sarah

Right from a couple of months old my husband and I have been worried about Caleb's development. He was a big baby (9lbs 3 oz) and breast fed a lot so he just continued to be a big boy. He had only rolled over 2 or 3 times by the time he was 8 months old and still needed support sitting until about 9 months. He didn't begin even taking his first unassisted steps until 16 months and up until 2 weeks ago has still had difficulty with his gross motor skills. At 2.5, he would only speak one word at a time, and only occasionally. His diet became restricted to pasta, bread, dairy and fruit. He would become uncontrollable, throw fits, scream, make repetitive noises, constantly moving, never settle down and never seemed genuinely happy. He has always been a good sleeper, but would thrash and kick in his crib for at least and hour every night and wake up with night terrors before finally drifting off to a deep, undisturbed sleep. He had a hard time climbing, never ran and fell over just about anything. My doctor finally referred us to a pediatrician who shocked us by suggesting autism. I went home and learned everything I could about it, and within an hour I knew that this was exactly what Caleb was struggling with. As soon as I learned about the diet, I went out and bought gfcf everything and started him on it cold turkey while waiting to have him diagnosed officially. The very next day, he said his first 4 word sentence and that alone gave me all the endurance I needed for the next several days/nights of withdrawal. He went to sleep right away from day one, but woke up 7-8 times a night screaming for a few days.

His tantrums got worse, he became the most wild I've ever seen him, and then we saw the changes. He started picking up 2-3 new words a day, and actually used them instead of just repeated them. His fits spaced out, he became calmer. For the first time he used pretend play and he sang in the car with me  (not words really, but melody which he's been unaware of). He listens because he understands us now. We can actually see the clarity in his eyes when he learns a new concept. He can take new information and apply it to other situations. His obsession over eating has pretty much diminished. He'll tell us when he's not hungry if we offer him a snack instead of stuffing it down just because it's available. He goes to sleep right away and doesn't have night terrors anymore, and when he wakes up, he's happy and calls for me. We're finally able to think about putting him in a toddler bed instead of his crib and he's becoming aware of when he has to pee.

His poops are still on the mushy side, but we're getting help with appropriate supplements and testing so we're confident his GI issues will resolve as well. At the playground, he wants to try climbing, and his brain can tell his body to move the way he wants it too, he just needs to build up his muscle now. He laughs genuinely instead of inappropriately and he's showing us an emerging sense of humor. He hugs and kisses and says 'loveyou' and I'm not afraid of him coming up and whacking me in the face anymore. I can't even begin to express how happy I am we found this diet and that we had the support of the people around us to help us start it. It is tough, I have yet to bake a decent loaf of gfcf bread, but we're doing it. He has had two infractions so far where someone has given him a cookie and his behavior became crazy almost immediately so we know it's working.

PLEASE try it out for the sake of your child and stick to it strictly. Don't be discouraged by a worsening of behavior, or by expense or by the challenge of adapting to a new cooking lifestyle.

It's more worth it than I can even try to express. We have the little boy that God sent to us now, he's not buried in confusion and chaos anymore. We're beginning to see who he really is and it's the most amazing experience and it's only been two weeks!

Child's name: Oliver
Age: 21 months old
On diet: 2 Days
Mother's Name:  Denise

My child's name is Oliver, and he is almost 21 months old.  We were told he has autism last Tuesday.  We started the GFCF diet on Easter Sunday (5 days later). 
 
He has been on the diet for almost 2 days and I have ALREADY seen DRAMATIC results.  Oliver had NEVER handed me anything.  Anytime he was done with something he would just drop it on the floor.  But yesterday, when he wanted his drink, he handed me his cookie to hold for him while he drank.  Oliver also has never pointed to anything to communicate with us.  (Except for his mouth- which is how he tells us he's hungry).  This morning, after only 1 1/2 days on the diet he pointed to his rear to tell us he has a poop in his pants! 
 
Oliver has always flapped his hands while he walks, but he stopped doing that last night after around 26 hours on the diet.  He walk with his arms swinging by his side now.  Since starting the diet less than 2 days ago, his selective deafness is nearly gone.  I can get his attention by saying his name almost always, even when he is focused on something he really enjoys.  Before I would say he was 50/50 on that!
 
I truly believe that for some children this diet is a MIRACLE!
 
Sincerely,
Denise 
 

Child's name: Matthew 
Age: 5 1/2 years
On diet: 5 Days
Mother's Name: Yvonne
 

 I have been seeking help for my child since he was 8 months old. At first the doctor laughed at me and just said tantrums are normal, but Matthew's panic attacks were not tantrums. He walked very late (19 months) and as soon as he could walk he started pacing, accompanied by loud moaning and humming. 

In many other ways he is normal, but his anxiety and social problems have been a real problem since he started pre-school. He was finally diagnosed with PDD-NOS a few weeks ago on Dec 8, 2008 and the doctor mentioned the success some have had with this diet, so I decided to try it. 

WELL! Let me tell you it is a complete miracle. Matthew has paced and moaned every chance he gets since he could walk, and he HAS NOT paced or moaned AT ALL in 4 days! He is generally happier and playing creatively on his own, which is also an total miracle.
I CAN'T believe I haven't found this sooner, but am so thankful that we have it now.
Yvonne from ,Canada


Child's name: Todd
Age:  25 months
On diet:  2  weeks
Mom's name: Dr. Rosa
 
Dear Judy,

Our son Todd is 25 months old and has been on the diet for 2 weeks.  Todd was diagnosed with PDD-NOS a month ago.  Since he has been on the diet, he is a completely different child.

 His eye contact has improved with strangers, and he is responding to his name more often, if not always.  Just today we were in a toy store, and he was interacting with a complete stranger:  making eye contact, if fleeting, and repeating words when prompted.  He has noticed his toys for the first time, such as his ball and drum which have always been available to him but of which he took no notice before.  He is much more verbal, babbling in ever more complicated ways and using some words in a limited fashion.  Three months ago he was absolutely silent.  Today he said "bye" to his speech therapist, something we couldn't have hoped for just a few weeks ago.  He no longer engages in some of his old, repetitive behavior.  He is more curious about his home environment and explores new things more than he ever did before.  Generally, he is much more focused, much more active, and we would say a much happier boy.
 
We had hoped that Todd would be a good candidate for the diet.  He had self-selected almost exclusively to dairy products.  We never noticed a particular affinity for gluten-rich foods, but we have removed gluten from his diet as a precaution.  The very first day after we eliminated dairy, he was calmer and more focused than he had ever been.  That night, however, the withdrawal began - almost like an addict going cold turkey.  He had clod sweats and a fever.  That lasted for a day or two, and since then his progress has been accelerating almost every day.
 
It is truly amazing what this diet has already done for our wonderful little boy.  We thank God every day that we came across it.   We thank you and everyone else involved in spreading the news of this diet and providing the support and help to parents.  For our part, we tell everyone about the diet and what it has done for Todd.  We simply cannot believe that anyone would not at least try it.
 
Warmest regards,
Dr. Rosa (mom)


Child's name: Isaac
Age:  4.8 yrs.
On diet:  3 1/2 weeks
Mom's name: Janeen 

My name is Janeen , my son's name is Isaac - he'll be 5 in October.  He was diagnosed with high-functioning autism March 30, 2006.  I learned about the diet at the Walk Now marathon for autism.  A man at one of the information booths talked to me about his son and how the gfcf diet has helped him.  I wanted to try it because I was intrigued at anything that was within MY power to help my son and not be at the mercy of help from a therapist (for which we are still waiting in the eligibility process here in the state of CA - it's now the end of May!) so, I was happy to try something that I COULD DO to help.

My mother-in-law found this website and it helped me to get started, because it was overwhelming. I starting 'easing him in' on the diet about 3 1/2 weeks ago.  I'll list the symptoms he had BEFORE the diet and the improvements we are seeing NOW:

1. Biting his arms when he would get upset - we have now not seen since starting the diet!
2. Terrified at the very sight of dogs, instantly scream - he's now even (with some coaxing) has pet a dog on the back with much interest in the dog and pride in himself!
3. He would just scream as loud as he could when he would get upset or frustrated - now he has expressed WITH WORDS his feelings, like: 'don't do that', 'I don't like that', he's even said 'that hurts my ears' - this is big!
4..  He wasn't at all socially interactive with kids that he didn't know and very limited interaction with kids that he did know - he took a child he knows by the hand and he said, 'come with me, let's go and pick out some videos' PLUS, I could also tell that it came from him and wasn't just repeating something that he had heard.  Also, today he asked a child he didn't know at the library 'are you watering the plants?' (the child was taking water from the drinking fountain and putting it on a nearby plant)  This is HUGE!
Yesterday...he grabbed my hand and said 'come with me', I said 'do you want to show me something?'  He then said, 'yeah'....I walked over and he pointed out a spider web and said 'spider web'.  YAY!
5.  He has never asked a 'why' question before - the other day he asked after I put something in the fridge 'why are you putting it in the refrigerator?' - this is so exciting!
6.  Since we got him potty trained (number one came easy, but number two he had a lot of anxiety about) he would get constipated and hold it in - he would scream 'I don't go poo!' when I knew he needed to...I would have to force him to sit on the toilet - 2 weeks ago (one of the first successes) I walked down the hall and saw him on the toilet going number two all by himself!!
7.  He would repeat things over and over and over, usually things that he heard off of videos he watches - I haven't heard him repeat anything in a couple of weeks!
8.  He would say 'you (or he) want(s) to go outside' when talking about himself - now he has said 'I want to go outside', sometimes I have to remind him, but I can tell he's definitely understanding the difference now.
 
Last Wednesday, we decided to go out and get some 'ice -cream'.  We thought Sherbet didn't have any dairy and that it would be alright....well NEVER assume is the lesson!  The very next day, he was screaming at everything and not expressing himself with words, everything was a full-blown tantrum and I knew there had to have been something that triggered it, the Sherbet was the only thing he ate that was out of the ordinary...sure enough there is an amount of cream put in the Sherbet.  Since him eating the Sherbet he has yet to go number 2 again and he just screams about it like before!  The effects of that Sherbet are long when dealing with that area....we are still seeing progression (accept for that following day!) he's now back on track with everything else.
 
THANK YOU so much for this website!!!!  I am so grateful that I am aware of this and how much it has helped my son, there is still much progression to be done...he has by no means 'caught-up' with the other kids his age...but I believe someday people will not even notice that he's not 'normal'.  He's such a wonderful child and teaches me so much.
 
I was disappointed with the recent article in Time Magazine about autism (the cover story) everything about it was great, except NO mention of the gfcf diet!!  It has helped so many people that it is so wrong not to mention it.  I'm not saying that therapy doesn't help....although I don't know because we haven't started it yet, but clearly I can't deny that it has helped others.  I just felt it was wrong not to at least mention it, if even in theory.
 
Thanks again for this website.  I highly recommend it to other parents I know.  Parents should give it a try.....it's SO worth it!!!
 
Janeen

Name: Shepard
Age: 4 yrs 9 months
On Diet: 3 weeks 

I wanted to add our story to your list. Our son has been through speech therapy twice, and has just completed evals at our childrens hospital for developmental disabilities. We had heard the term autism/PDD thrown around a few times, and researched everything we could on the web and through the library. I had read about your diet when he was almost three, but didn't have the nerve to try it then......maybe I was in denial, boy do I wish I would have. It was like he started to slip away, and something recently was telling me to intervene quickly before we lost him.

Three weeks ago, I decided to give it a try. I wanted to try it BEFORE he started any type of therapy so I could get a clear picture of how it helped him. I had read about therapists attributing any positive results to therapy, not the diet. Well, after 3 days without dairy, WOW! All of a sudden we had an alert child! He was talking more, making sense of the world more, and engaging us! When I phased out wheat/gluten it just got better. He is happier, his behavior is better, his muscle tone seems to be improving, eye contact is great, he is speaking like a young 4 year old would - but that's OK with us!!! For the first time he told me he was hungry - before I always had to ask. I doubt anyone would think he is different from other kids. He is asking kids to play with him. This diet and website was a blessing from God.

When we went in a week ago for our formal diagnosis, we got Autism Spectrum Disorder/PDD-NOS. He needs language/communication therapy, a little OT and social skills training. When we told the doctor about the results (a teaching developmental ped) she said "some people see results, some don't - if you think it's working for you great". What a great disappointment, but not totally unexpected. When we told a pediatrician in our medical group that has seen Shepard before, and also attends church with us, she had never heard of the diet and asked very disapprovingly "well what does he eat?" Truly unbelievable that a lot of physicians don't believe in looking outside the box that ASD can lock children into.

Luckily we are going to see a ASD ped in April that also is doing grant work on this diet - so we really feel hopeful that we are going to get proper help. We are also going to ask her about anti-yeast therapy.

The changes are so great, and can come so quickly. I am fairly skilled in the kitchen, so I am adapting my good old Better Homes and Garden red checkered cookbook into gfcf recipes. So far there are many successes than foods he goes "EEEWWW" to. I am taking him off any residual soy this week, to see if there is any more improvement. I have also taken myself off dairy, and feel better! Hopefully I will have a dairy free house by the end of the year. I will say that having the support of my husband from day one has been a big advantage. And my 7 year old daughter is now learning to read labels in the store to look for ingredients he can't have. She is even enjoying his foods!

Thank you for a great site! For anyone who is unsure of this diet - believe me, anything that could help your child is worth it.

Child’s name:  Philip
Age: 3 years; 2 months
Mom’s name: Elena
On diet: 7 months

 My son was never diagnosed with autism, but he exhibited several symptoms including:  Obsessive/compulsive opening and closing of doors and locks; rarely made eye contact with anyone and was in a general fog most of the time.  He also never babbled as an infant and had not spoken by the age of 2 ½, except for a few simple words (e.g. Mama, dada).  He received occupational therapy for 4 months and speech therapy for 2 months.  I tried countless other remedies including fish oil, vitamins, massages, etc. – nothing seemed to work.  He remained in a fog.

 On March 8, 2006, I was in the park with my husband and children and we met two fathers with autistic daughters.  They told me about GFCF.  I started the diet a week later – cold turkey.  GFCF transformed my child’s life.  On the second day he started making eye contact.  Within a week he could recognize and recite the entire alphabet.  I no longer had to call him several times to get his attention.  He responded to me almost immediately.  2 months later he “flunked” out of his speech therapy class, because he had become so talkative.  After only 2 months on the GFCF diet (with no vitamin or other supplements) he showed 10 months of improved development.  7 months into the diet, Philip is attending regular Pre-school and his language skills are nearly age appropriate.  Philip’s brother, who is 18 months older, was very aggressive with other children, but became calm and well behaved immediately after we started the GFCF diet.  I believe if your child has any attention problems or aggressive tendencies you must try this diet for at least 3 months.  It is a very small price to pay!  You must know doctors or speech therapists will never suggest this diet, because it is not a medically proven treatment.  I requested that it be recommended to other parents with students in Philip’s speech therapy program, but the therapist said she could not legally do so.  Therefore, you are on your own unless you find such remedies “in the park”.  Note:  The first month of cooking and learning the GFCF diet is very challenging.  Afterwards, it is a piece of cake, when you see the results!  It is the greatest blessing that I have had as a mother.  Praise the Lord  for answering many prayers like mine!  

Elena - “If ye shall ask anything in my name I will do it” (John 14:14)
 

Child's name:  Joey
Age: 4 years, 4 months
On diet:  3 months
Mom's name: Julie


I just wanted to add our story to the list. Our son Joey was diagnosed with PDD-NOS on September 25, 2005 at 4 years, 1 month.  He was verbal, but behavior was extremely difficult, did not respond to questions of any kind, and echolalia was thick. He also had terrible constipation and potty training was proceeding very slowly with nocturnal bowel movements almost every night.  Our doctor handed us the diagnosis, a flyer on PDD-NOS, and told us he'd always need help. That was it from a developmental pediatrician.  We were on our own to find out what we could do for our son. Thankfully, the internet is available now to help parents connect and help each other, since traditional medicine obviously has very little to offer at this point.

We went cold turkey GFCF. I was and still am in nursing school in a very demanding program. However, I asked my instructors if I could switch to part-time status to allow time to shop and do this diet for our son, and to arrange for ABA and the numerous visits to a DAN practitioner that would follow.

Joey adapted well to the diet. I'd say the results were instantaneous with significantly less difficult tantrums and sleeping well through the night for the first time in his four year old life. His language has increased greatly and echolalia is virtually gone, although his articulation is still poor (we have him in speech therapy now that we're funding ourselves since our county school system has yet to provide therapy to him). We're seeing singing, loads of imaginative play, he's drawing faces, responding to questions, coloring, and now recognizes all letters of the alphabet and his numbers. He is counting one to one correspondence to 15. He can pedal a bike and stimming is greatly reduced.  He responds with empathy to his siblings and seems to understand emotions in others very well, commenting on "sad faces" and "happy faces." He can tell us now that we're making him mad/sad, etc. instead of merely throwing a tantrum. He's  been attending a regular preschool and needs assistance, but socially he blends in well with the other children at this point and follows well with games and class activities.

Through the diet and the ABA he's received, he just seems quicker and more alert and responsive overall. We now see what a highly intelligent little boy we have. His constipation is also GONE and he has potty trained entirely during the day, wearing only a pull-up at night. Although our son is less severely affected, I still feel that even a child like ours needs as intensive a treatment as someone severely affected. To be affected is to be affected - and we can't just minimize the higher functioning children with a less intensive approach.

We are only three months into our treatment of Joey and plan to do much more. We're seeing a DAN doctor today in fact as I write this. We have so much hope and I don't doubt Joey will achieve something wonderful in his life. I so highly commend the people in the world of biomedical treatment who have brought this and other treatments to the forefront -- all of them. They are true pioneers and traditional medicine ought to stop sneering and start listening. The gfcf diet is not the cure all, but is the extremely important first stepping stone to treatment and, what is our our hope, a complete recovery for our son.

 

Child's name: Ara
Age: 9 years
On diet: since April 05
Dad's name: Arsham
Mom's name: Ani

Ara was diagnosed to be autistic at age 3.5, never developed speech, has severe focusing issues and trouble with communication. We tried speech therapy for a long time and he started saying words spontaneously when he was 7 years old. 5 months ago we started the GFCF diet, this was recommended to us by a mother who cured both of her autistic boys with the GFCF diet. Within 4 months of starting the diet, Ara was potty trained, started reading, started saying long and sophisticated sentences, he lets us cut his hair without any problem, hand flapping has gone down to a minimum (only if he gets very excited), and he is involved with other children during games, in short he is a changed person.

Such a dramatic change in such a short time was totally unexpected, hence we are now firm believers of this diet and recommending it to every parent who has autistic child. We are also giving Ara super Nu-thera as dietary supplement and planning to do some oral chelation therapy administered by an expert. There is still a long way to go but we are confident that Ara will grow up to become a normally functioning person.

Arsam Antreasyan, PhD

"... if all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest" - Daniel Webster

 

Child's Name:  Zach 
Age: 10 years
On Diet: Since 1999
Mom:  Sheryl

Zach was diagnosed as severely autistic at the age of 3. He had lost all speech and communication skills during normal development (until age 1.5). Six months after going on the diet 100%, he went from no speech, thru echolalia, then spontaneous speech. 

We followed up with ABA, AIT, and Fast-Forward and got our little boy back. He has now been on the diet .5 years and is just completing 4th grade in a regular classroom with no aide. The school is aware he had 'neurological damage' when little and has to be on this diet to prevent further damage.
 We were advised by the ABA consultant to stop the 'A' label as he no longer needed it. He still has some social delays but is continually learning and progressing. 

We expect he will be a full functioning adult, needing only his diet and vitamins/supplements to keep himself healthy. I cannot tell you what happens if he goes off the diet, as we never allow this. If we go out for dinner, I take his food along and ask them to heat any parts that need heating in the microwave. I keep frozen cupcakes (Pamela's Chocolate Brownie mix with a little honey added for moistness after thawing) in the freezer at school and at church, for when a treat is needed. 

When we travel, I take a small cooler with freezer packs, tape it up and label it, and pack the dry goods in a hard sided suitcase. The airlines are very cooperative as long as there are no open liquids. We even take his own popcorn to the movies. How do we do it? Since we are a large family, I try to keep the meals mostly gf/cf and modify just the starches for Zach (ie: use Prago Traditional spaghetti mix and add meat, then mix ours with cheap noodles and Zach's with Quinoa spaghetti noodles). I tried baking his bread and buns from scratch and learned I am not a baker. So I do splurge and buy Papa's Loaf bread, Ener-G buns, and use mixes (Miss Robens and Bob's Red Mill) for other starches. I take Zach with me to buy ready-made items such as cookies, and he has to finish them before I buy a different brand. This helps him to be responsible for his choices. 

If you're not sure about trying the diet because it's so much work my comment is "If there's a chance of getting your child back, isn't that worth it?" Our doctor said you have to do it at least 6 months. Plus, there are lots of us willing to help. **

PS - Zach's favorite meal is French toast made with eggs and water, Papa's Loaf bread, Pam spray, pure maple syrup, Johnsonville Original Breakfast Sausages, and Dari Free milk!
Thank you Judy for all your hard work!

**
(Note: Join GFCFKids , our free on-line diet support discussion group, with membership totaling over 10,000 families or find a listing of local support groups across the United States on our Community Bulletin Board)

 

Child: Geoffrey
Age: 3/6
On Diet: 6 days!
Mom: Dr. Tamara D


Hi Judy,
We are so excited we wanted to share our progress:
Our son has not been formally diagnosed with autism and/or PDD but has been classified as a "late talker". He has never had any behavior problems or self-stim like activities and is a very warm happy and loving child. His speech demonstrated significant delays however (he was classified at around the 18 month old level). He is around the size of most 6 year olds so you can imagine how hard it was for him when other children approached him and all he could do was babble. We decided to give the diet a try and after 6 days it is amazing! Geoffrey would almost never initiate speech. Words were limited to songs or pointing out animals names or the names of shapes. This morning he brought me a book and said "Panda Bear" when we got to the page with the bear. He is laughing and engaging us in speech after just a few days. It almost feels like sleeping beauty waking up from a deep sleep. He has always been pretty engaging but even this has improved and he constantly wants us to read him books and he is very clearly repeating words. Before we started the diet his diet was very limited. Veggie nuggets and bread, grapes and tomatoes, ryr bread and butter for breakfast. Yesterday he actually tried eggs and a tiny bit of sausage. Thanks so much for this website and all the info you provide. We will keep you posted!

 

Child: Kester Olivo  
Age: 4 yrs.
On Diet: 3 weeks
Mom: Aixa


My name is Aixa Olivo and my son is Kester Olivo , a  4 y/o with PPD-NOS.  My child has been on the diet for only 3 weeks but the changes have been great and I like to deeply thank the GFCF diet support web site for contributing to my child's improvement. 

Before I started the diet my son was always in a bad mood. He used to throw himself on the floor, side walks, street, etc,  Everywhere we went, he always had a tantrum. He was biting himself and others, kicking, pushing us away, screaming his lungs out for days in a roll, etc... I couldn't go out to the stores with him because the crowds used to bother him. 

I was so depressed that I spent days in tears without knowing what to do to help my little boy behave in a normal way.  I left the hospital with a diagnosis and no ideas of how to handle the situation or how to face it. Being a Registered Nurse myself didn't make a difference in confronting my son's problem, but at least it gave me the knowledge to understand better about his neurological disability and to try to find hope in it.

I started the diet on my own with the help of this great web site. I also started my son with some supplements. At the beginning I was reluctant to place him on the diet. I thought that it was too difficult to follow, I was too scared, I knew my son favorites and only acceptable foods contained wheat on it. I was too afraid that he was going to starve to death. For my surprise, my child started to eat with the spoon and swallow his foods (no more pocketing)!! It this a miracle??? My son never swallow or chewed a whole variety of foods!!! 

He started to make long sentences with sense and clarity. The screaming greatly reduced. His ability to focus is much better. He is now very friendly and lovable. No more head or feet banging at night time while he is asleep. His constipation disappeared, his bloating and gas symptoms are also gone. He was always smart, but now he is even smarter, he is already learning to recognize the alphabet in only a few days of practice. 

I want to advise the parents to take wise decisions on time for your child's well-being. Please, don't be afraid to try new things if this is going to contribute to the wellness of your precious child. Take one day and one step at a time and if you persevere you will be recompense with your child's improvement.

Good luck to all of you. May God help you and guide you through the right path.

Sincerely,
Aixa 

 

Child: Josh
Age: 4 yrs.
on diet:  22 months
mom: Barbara


My son is four years old. He was born at the end of March, 2000. He has been on the diet since August 5, 2002, at about 28 months of age. Our son rolled over at three months and sat up at five months, and other than chronic constipation and dairy allergies, he seemed completely normal and happy. His development gradually slowed, however, and by six months he stopped rolling over and almost seemed to "forget" that skill. He developed a noticeable tremor. He did not crawl or move around on his own until age 10 1/2 months, and even then his only motivation was chasing balls, which were his main obsession. He could play a form of "catch" as early as seven months, which impressed everyone but concerned me, because literally his*only* interest was balls. He didn't seem to care about books, animals, toys, or even other people, and he could watch television and amuse himself in one spot for long periods of time. By twelve months, he had one perfect word: "dog." By 16 months he was not yet walking, or even pulling up by himself, and he lost the word "dog." He finally began walking at 17 1/2 months.

At 18 months he became obsessed with Blues Clues videos, but he focused only on the music and the hand motions made by Steve, the main character. He would have watched this program ten times a day if I would have allowed it. He did not recognize Blue or Steve or any of the other characters in other contexts, like toy stores or in pictures or when we went to a Blues Clues birthday party. He started standing in front of the mirror for long periods of time, watching himself do an elaborate set of hand motions that started as an imitation of Steve, but soon became more complex. Before long he was doing these hand motions every day, all day long. He began throwing huge, unexpected tantrums if we tried to read to him or if we took him in certain restaurants or to certain public areas. He wouldn't look at me if I tried to teach him a word. He never pointed. He had no words for the members of his family or for his friends and frequently did not seem to notice or care who was holding him.

By 20 months I woke up with a knot in my stomach every morning. I dreaded play group because it became increasingly obvious how "different" my son was. Other children were beginning to show an interest in their diapers, each other, speaking, and the world in general. My son was increasingly tuning me out, never called me Mama, and showed no awareness of his body or his surroundings. When I took him to a petting zoo with a group of other children, he spent the entire visit picking up wood shavings off the ground. He didn't even see the animals, much less appear to be interested in them. Chuck E Cheese terrified him. He feared water, music, and unfamiliar videos, even those made for children, like Baby Einstein. He stopped eating with a spoon and went back to using his fingers. For his second birthday I invited only very close family members: my sister, my parents, and a family friend who is like an aunt to him. We bought a swingset for the backyard, hoping it might help his development if he had his very own slide and swing. When we let him outside that morning, he didn't even see it. He ran away in fear and terror when we all sang "Happy Birthday" to him. I found him squatting in a corner at the side of the house, doing his hand motions.

I heard about the diet shortly after his second birthday, and finally got on the right path in August of that year, when he was 28 months old. He started talking ten days after we began the diet. He has been developing steadily and normally since that day. He is now four years old. He is enrolled in regular preschool and fits in just fine. He is fully potty trained. He speaks conversationally, in regular sentences, and although his articulation lags a little behind, any stranger can understand him. He played tee ball this year and he was one of the best players on the team. He has a sense of humor, he plays imagination games with his younger brother, and every day he is a little bit more like everyone else his age. It has been a long, slow process, with leaps in development and then weeks when he seemed to stall out, but overall he has gained four years of skills in a two year period. He loves birthday parties and was *so* excited on his fourth birthday when everyone sang and he got to blow out the candles. We invited ten four year olds, and he was proud and happy that all his friends were coming. He has absolutely no unusual behaviors and his only remaining difficulties are language and to some extent, social skills, although both of these things are improving rapidly. If  he gets something forbidden, particularly gluten, it all comes back -- the hand motions, the tantrums, the spaciness -- and now he finds it so upsetting that he is very vigilant about following the diet himself. 

I feel blessed and relieved to have found Karen Seroussi's book when I did. Words cannot adequately express how absolutely grateful I am to her and to those who helped me in the beginning. I feel like the luckiest person in the world. There is just no way to describe the sense of relief and gratitude that comes along with such a dramatic change. My son is GFCF and also 100% soy free. Other than that, we have no limitations and take no supplements, although we incorporate a heavy dose of common sense into his diet. Like any mother, I try to limit the amount of sugar he eats and I try to make sure he gets a full package of nutrients, particularly calcium. We use Pacific Rice Drink because of the acidophilus.

My son has had speech therapy and occupational therapy, off and on, although we have not noticed much difference during the off periods and the on periods. Mostly it just seems to be a matter of time for him. These stories meant the world to me when I started this diet, and I hope mine helps someone else. I remember when I first started the diet, I went to bed at night wishing, in some secret place, that this diet would be a miracle and I would wake up to a son who would say, "Good morning Mommy!" It didn't happen exactly that way. But two years later, I have a son who routinely says "good morning," who understands emotions and facial expressions as well as any other four-year-old, and who told me last night, while I was brushing his hair, "Know what Mama? I wuv you."

Barbara

 

Child: Ross
Age:  13 yrs. 
On diet:: 1 1/2 years
mom: Beverly


My son Ross was diagnosed with Asperger's when he was 10 years old.  As an infant, he had major food intolerance and was on a central line for feeding for 9 months.  He also had continual gas and diarrhea during infancy.  At two years of age, he was also diagnosed with a deficiency in his pancreatic enzymes.

Ross was a hyper kid even while on his central line.  I just attributed it to  his being a boy, very different from his two older sisters.

At age six, Ross was diagnosed with ADHD and Central Auditory Processing Disorder, and placed on Ritalin which appeared to calm him considerably.

Once he was diagnosed with Asperger's, I began to do research.  When he was on Spring Break from school, I decided to try the elimination diet which we had used with his older sister years earlier, due to allergies.   In retrospect, I was actually beginning the GFCF diet without knowing it.  His withdrawal was immediate.  He had a severe headache and appeared to "hurt" all over as if suffering from the flu.  After two days on the diet, he began to beg for his food, then demand it, in anger.  Not wanting to cause him to break the diet totally, we allowed him a burger at school on the fourth day.  He tolerated this fine and seemed appeased.

By the end of the first week, he was a much calmer child.  After about nine days on the diet, I began doing research on the internet and found the GFCF diet.  I called for my husband to come and read the research which confirmed what we had been seeing already.  All of the pieces of the puzzle began to fall into place and we knew we were on the right track. 

Ross was taken off gluten and seemed to have no adverse effects when it was inadvertently added back into his diet three months later.  He cannot have any milk or soy products.  When there is an accidental infraction to these products, he will become sick in about an hour and report he is dizzy, has a fever inside, and that his head is pounding.  He is very vigilant about reading labels and he is beginning to make the connection between how bad he feels when the infractions occur and what is causing the bad feelings. 

I am so grateful for all the material published that helped me along the way.  We bought the diet package and read it religiously.

My son would not be where he is today if it had not been for this diet and the information made available regarding it.

Beverly

 

Child: Benj
Age: 11
on diet: six months
mom: Annie

I felt compelled to tell our story because I read very few stories on how older children and adults respond to this diet-

Our son Benj was diagnosed with Asperger's Syndrome in November of 2003. He's an extremely bright kid and has always managed to "get by" within the school system with good grades. He has an amazing vocabulary and command of language and he has a photographic memory.  We always accepted his "eccentricities" as just part of being an extremely gifted child ( and he was just like his dad). In retrospect, we now know otherwise. He always had his nose in a book ( he taught himself to read at age 2), but he never had any friends and he loved lining up blocks and legos. He hid under desks when he felt uncomfortable and had strange eye contact. He also had odd play- loved the same toys and the same books- He had problems understanding idioms and he has had difficulties with changes in routines. He was an extremely fussy child, and he loves to spin things! 

After starting 5th grade, he started to become extremely aggressive, he began stimming excessively and he began hitting himself. His organizational issues have always been less than desirable , but we began to see it effecting his grades. Neither my pediatrician, nor the staff at the public school he attends agreed with me when I mentioned Asperger's.  After getting a diagnosis from a pediatric neurologist, the school district listened and did a another round of testing.....and FINALLY agreed with me.

We put the entire family on the GFCF diet in November. We went cold turkey . Within three days, Benj's teachers were asking me if we'd put him on medication. He has become calmer, and more aware of his surroundings. Since then we've encountered little miracles daily- He has become more empathetic, he has begun noticing how certain family members resemble each other. He has started to tell little white lies. The circles under his eyes and His "allergies" have disappeared. He no longer hits himself and he has made five friends this year. His room, while still cluttered, is not the DMZ it was.  He will on occasion share a spontaneous giggle of joy, now- 

If Ben gets gluten or diary in his system - the "old" Ben come back- and it takes about a week to back on track- My husband, who now knows he's AS as well- is less edgy, more flexible and happier since starting the diet-

Benj will always have Asperger's - we know that -and he will always have his issues to face-  but, this diet has done wonders.

 

Child:  Logan 
Age: 2 years 7 months
On Diet:  this round 4 months
Mom: Lora

I write this with trepidation.  Because my X, Logan's father does not believe he truly has Autism.  He believes that all of this stems from me trying to manipulate our divorce agreement etc.  However the story goes way way back.

This is Logan's second time on the GFCF diet.  The first time we did this, I had no idea what it was called.  All I knew was that something was bothering my child and I had to do something.  Logan is not my first child - so when the doctor and my husband said I was just being an over-involved, over-protective mother I knew they were wrong.  But the point is.... I was all alone in the search.  The search for something to make my child stop crying all the time, something to help him sleep, something to make it easier to dress, bathe and play with him.  Something to take away all of the "pain" that he was in.  Logan was a child that did not sleep well (sometimes not at all), was so stiff that bending him to place him in a high chair or bath seat was sometimes horrifically difficult, and he did not cuddle.  When he ate he bloated up so bad that the gas ended up surrounding him, he bloated in the front of his stomach, he bloated beneath his rib cage, he bloated around to the small of his back.  He would have such painful gas that he would scream - not cry but scream- from midnight until 4am when I would in desperation give him a suppository to help him pass the gas.  He also had sleep apnea (undiagnosed until age of 2 but I knew he had it) so when he did sleep in brief 20 to 30 minute segments, I feared for him every second. 

What you also need to know is that I work in the field of Early Intervention.  I work with families that come to the system for help.  I am the person that connects these families with all of the resources and help and hope.  Yet with my own child I was utterly alone.  Not totally alone I guess.  I had my mother who whole heartedly agreed that the issue was feeding related.  I had a close friend who is a speech language pathologist and works also with early intervention, who witnessed weekly the pain and issues facing this dear child.  While they could agree with me that something was going on, they could offer no suggestions that seemed to help.  I finally got a reluctant pediatrician to make a referral to a GI Specialist who by phone recommended a hypoallergenic elemental formula.  Try it for 2 weeks prior to seeing him.  If it did not work, stop.  I was so desperate that I ordered a month's supply.  Within 5 days I was convinced it was the answer.  Celiac disease.  That had to be it.  We had tried every formula known to man (I breast fed until 4 1/2 months even going gluten free myself but with little effect on his discomfort).  It was amazing.   His muscle tone improved, he was more alert during waking, and slept more.  Still not through the night, but more.  He was more playful and more affectionate.  I should also add that during this same time period I made a referral into he EI system and he began receiving speech and physical therapy and just before his first birthday occupational therapy was added.   While the formula helped - the GI symptoms did not go completely away.  The GI specialist spent less than 5 minutes and did not complete any more than a cursory physical exam and stated as he left the room he does not present as a child with a serious GI disorder.  My response was I don't think I ever said that I think my child has  serious GI disorder, what I said was my child can eat nothing more than applesauce without having pain.  I remember remarking to the partner of our physician that he could eat nothing but applesauce and pears without discomfort.  No green vegetables, no sweet potatoes, no cheerios or oatmeal.  I was told that there was nothing in cheerios or sweet potatoes that would cause these symptoms in a child.  None the less, all grain was removed from Logan's diet.  No soy, no potatoes, no rice, no oats, no wheat, no corn.  I had myself put him on the GFCF diet (milk products had previously been "banned").  Signs were posted on the fridge and by the high chair to remind babysitters, grandmas and the like.  They all thought I was nuts.  After a few weeks of this (and lots of support from our OT who was the first to tell me about "Leaky Gut") Logan started getting better.  He slept through the night for the first time.  In a few weeks the progress was so advanced that PT and speech therapy were discontinued.  We did continue with OT for sensory issues. 

About this time, his father filed for divorce.  The strain had been too much.  Having a child that was so needy took what was left of an already strained marriage (due to mental health issues, alcohol and messy in-laws) and shredded it.  The dad resented all of the time it took, all of the expense of the food and formula, all of the therapy, the unhappy stressed out, exhausted mom who no longer had time to pacify his needy-ness. Upon moving into a safe house, we could no longer afford the formula or the specialty food.  At the age of 18 months Logan had to be taken off of our homemade diet.  His speech failed to progress.  He began to have problems with joint attention.  He withdrew from touch.  He began self stimulation in ways that he had never done before.  So I the mom was faced with the questions - is this new, an affect of the separation and all of the violence of the past months?  Or were these things always there, waiting to come out.  Is this typical 18 month language loss of autism or the byproduct of serious GI pain?

Since December of 2003, Logan has been following the GFCF diet.  His muscle tone is greatly improved though he still shows a good deal of asymmetry.  He still craves vestibular and prospective sensory input but no longer self stims to the point of injury.  His language has improved.  He was using 1 word spontaneously from a vocabulary of about 20 words and had about 10 echolalic phrases up to 5 words in length.  He still prefers cuddling on his terms, but now his terms occur almost all the time.  At the age of 2 years 4 months he recognized himself in a picture for the first time.  He attends a community daycare (that substitutes their menu with items from home).  His teacher sent home a note about 2 months after starting the diet this time..."I love my new Logan".

Yeah - me too. 

 

Child:  Eric
Age:   3.6 years
On Diet:  2 1/2 weeks
Dad:  Andre

Editor's Note: Keep in mind that not all ASD children are alike.  Not every ASD child has loose bowels or constipation. If your child has autistic tendencies, regardless of stool problems, please read the other success stories that are included in this section.  

A short success story to share for anyone who is wavering about trying the diet.  He's only been on the diet for 2 1/2 weeks, but I could have written this message on day 1. 

Eric has had chronic loose stools since last July (diagnosed in Sep), so about 9 months.  In January when we went dairy free, he started having maybe 1 out of 10 bowel movements that were normal (well formed and firm).  2 1/2 weeks ago, on the VERY SAME DAY we went 100% gfcf, EVERY SINGLE bowel movement he has had for these past 2 1/2 weeks has been "normal."  It cannot be a coincidence and in my mind is absolutely and certainly attributed to the gfcf diet because that is the only thing we have tried and changed over that time frame.  No vitamins, supplements, enzymes, probiotics etc.  Nothing at all except the diet.  In fact, given the time lag of digestion it almost tracks right to the hour.  It is too soon to report on other progress he makes (hopefully), but by then we will have tried other interventions as well as the diet, so it will be tough to attribute future progress to any one particular intervention such as the diet, but the one thing that is 100% certain in our case is that the gfcf diet immediately halted a 9 month long stool problem.

This doesn't mean it will work as well or as quickly for everyone, but there is absolutely no reason not to try it.  There is far too much anecdotal evidence for anyone to stay sitting on the fence on the issue, or to try only cf free because it's easier. 

Thanks,
Andre

 

Child: Nicholas
Age: almost 4 yrs.
On Diet: 4 weeks
Mom: Elaine Jermyn

Having read most of the success stories already I have to say that mine is not much different really. Basically my son from the time he was born to about 2 years of age -DRANK MILK and that is all he would have. He was officially diagnosed autistic when he was almost 4. Having read only comparatively recently about the gfcf diet I immediately stopped giving him milk....which lead to a total removal of gluten/dairy products as well. 

Since doing so I have seen a remarkable change in his behavior - He will run up to me with good eye contact and speak in 5-6 word sentences whereas before he would not even acknowledge my presence. He will be 5 years old on November 1st and I have to say that I have great hope for his future and I am just so glad that this intervention has worked for me because I only started doing this about 1 month ago.

Mother of Nicholas Jermyn aged 5 (almost!!)

 

Child:  Caroline
Age:    27 months
On Diet:  4 months
Mom:  Stephanie

My daughter was diagnosed on the Autism Spectrum 4 months ago. (September 2003) We were told that she was in the moderate to severe range.  I put Caroline on the GFCF diet 4 days after the diagnosis.  This website is awesome as I printed off the "illegal foods" and went to the grocery and natural foods stores.  I made a couple of mistakes early on...but mother's instinct is an amazing thing--when I would question an ingredient--I would go to the website and find whether or not it was legal or illegal.  I always erred on the conservative side.  This was my daughter after all.

The improvements since implementing the dietary intervention are numerous.  Her eye contact has improved so much that she appears neuro-typical.  She doesn't gaze into space and giggle like she used to--it was very odd behavior of which we now know is an autistic like behavior.  She responds to her name!  We had her hearing tested because we weren't sure if she had a hearing problem--the hearing test was passed with flying colors--her responsiveness has improved due to the dietary intervention.

Her stimming is minimal now--prior to the diet she would flap her hands, tippy toe constantly-- since putting her on the diet--the stimming behaviors have diminished significantly.  We have also increased her sensory input to decrease these behaviors..but the sensory "diet" was introduced recently and the reduced stimming behaviors occurred before the increase in the sensory input--again, I attribute the improvement to the gfcf diet.

The two biggest improvements are the following

Prior to diet--she was VERY fussy!  Fussed all of the time, whine, whine, cry and more crying.  This behavior has virtually stopped--when she fusses it is for an appropriate reason:  she is tired, her big sister took a toy away from her, etc. 

Affection and Cuddling:  Prior to the diet--Caroline did not want to be held or cuddle.  She would arch her back and push us away.  We would have to sneak a kiss in as she would push us away.  Since the diet (this took about 10 weeks to see improvement) she gives kisses, gives them on command, she cuddles, she gives hugs, she likes to be held and read to--AMAZING!!!!  Selfishly, this is my favorite improvement.

We work hard to find new foods to introduce and new flavors.  We have also had to remove yeast and soy from her diet...but the effort is worth the reward.  I have spoken to other parents about the diet and I get the following responses:

It's too hard, it's too expensive, I will never get my child to give up cheerios, etc, etc.  I want to scream--"Who is in charge here?"  "This is your child's welfare we are talking about!"  The money thing is a misnomer, too.  In the beginning, it might be slightly more expensive because you are trying new foods and your child may not like them...however, your child will find the foods they like and you can incorporate this into your grocery budget...so do you really need that bottle of wine, that six pack of beer, all of the prepared non-gfcf foods?  Those are expensive.  Can you really look back at the end of your life and be sure that you tried everything for your child?  I want to be able to do everything possible for my child, everything that I know to do.  Isn't our goal to have our children be self-sufficient and tax paying citizens?  If it is, are cheerios, milk, teddy grahams worth not having that as an outcome????

Since Caroline's diagnosis, we have incorporated the diet, increased her therapy hours, incorporated a sensory diet for her vestibular issues and instituted some ABA activities and implemented some of the DAN protocol.  The therapy that Caroline has been on the longest is the diet--3 months after her original diagnosis--we had another assessment performed on her by Autism professionals.  Her diagnosis is mild NOT moderate to severe.  I attribute a lot of her improvement to the diet...not all  but a lot.
 
We have a long road ahead of us--she has communication issues that we must resolve and sensory (vestibular) issues that we have to stay on top of--but we have unlocked our child from the fog and again the diet contained a key to accomplishing this significant improvement. 

God Bless all of you who have identified the dietary issues and created the informational websites and material for the rest of us to benefit from--try the diet, ignore the initial cry's for the cheerios, etc.  You are the parent, you are in charge and you will see your child improve!

Stephanie

 


Child's name: Izabel 
Child's currant age: 3 years old
By mother


Hello my name is April Palmer and my daughter Izabel is 3 years old. Izabel is still in the process of getting a diagnosis, but I know she definitely has a PDD. She wouldn't talk to us , she had poor eye contact, walks in circles on her toes, lines up toys, etc.....

I read about the diet, and decided to try it. I felt so helpless, and at least this was something I could do. Izabel always spaced out when she ate, and all she would eat was dairy and wheat!  Well in one week on the diet the eye contact improved, she seemed to understand us more, and TODAY she is talking!!!! I have spent so many hours trying to get her to say a simple word like mama, and she would look at me blankly, and eventually throw a fit if I kept pushing. Now she is saying every word I ask her to say!!! Mama, Dada, Tigger, book, EVERY WORD!!!!  I am so excited!  In one week she has changed so much it has to be the diet. I can't wait to see how she is in a few months!!

If any parent out there is hesitant to try this diet, I beg you to try, you have nothing to lose and and everything to gain.  I am so thankful to all the parents that tried this diet and shared their stories, this site gave me the initiative to try it,  Thank you so much for putting a great resource out there, I cannot find words to express my gratitude.!!!

 Sincerely and thankfully,
April Palmer

 

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Child's name:  Patrick
Child's current age:  3 years 6 months
Been on diet:  3 months
By mom:  Amy

I was frustrated early on after the diagnosis because so much that I read indicated that a diagnosis after age 3 meant the critical time for help/recovery had passed.  Patrick's second opinion indicated apserger's, rather than the initial diagnosis of mild-high functioning autism.  We started the diet 13 days after the first diagnosis and noticed casein withdrawal in 24 hours; increased eye-contact and onset of imaginary play within 4 days.  Gluten withdrawal was full of grouchiness approximately a month later. 

Three months ago, Patrick spoke primarily in 3 or less word combinations and had little to no pronoun use.  I'm happy to report that he is more often than not resorting to words to completely improve his use of pragmatics, rather than tantrum or just get frustrated.  He totally uses pronouns and his word combinations are typically 7 words or more, and we are seeing the beginnings of conversational speech.  Previously he would just state single words.  He tantrums much less often, and when he does, it seems shorter-lived.  He reserves these for serious situations, not just any old thing like before.  this is all diet alone, and lots of work from mom and dad, but mostly Patrick.

My best description of what has happened is that a fog has been lifted, the static or white noise that seemed to be interfering with his progress is very nearly gone , and he is much more capable of learning.  We'll be sticking with this, as there is so much more to learn.

 

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Child:    Paul
From:    Joan (mother)
Age:      5 yrs, 10 months
How long on diet?  2 years - 10 months


Paul was a happy, well developing little boy until about the age of 2 - when his speech delayed and he developed a lot of self-stimulation.  After hearing tests, and speech therapy analysis - he was entered into the public school system special education program for pre-schoolers at age 3.  The teachers recommended that he be tested for autism.  At the age of 3 1/2 years - Paul was diagnosed as PDD-NOS - and continued on with his special education pre-school and private speech therapy.  His teachers recommended that Paul attend the year-round (summer school) program to make sure that his routines and schedules were not disrupted during the summer break.

In January, 2000 - I saw the article in Parents Magazine by Karyn Seroussi.  My husband and I decided to try the diet, the day after Paul's 4th birthday (1/29)- one last "hurrah" with birthday cake and milk.  At this time Paul was only trained for urinating but not for bowel movements.  We went immediately onto the GFCF diet.  We could see immediate results in the dry skin and itchy patches that disappeared from Paul's skin and his behavior improved as well!  He reacted better in the classroom and in March (1 1/2 months after we started the diet) - his pre-school teachers told us that his improvement was so dramatic that they didn't feel he needed to go to the summer school session.  His private speech therapist also noticed a dramatic improvement in his behavior as well as in his receptive speech.....and asked me more about the diet - so she could recommend it to other parents.  His Sunday School teacher told us that "Paul is a different boy" in class.

Four months after starting the diet - Paul trained himself for bowel movements ! Hurray!  He still didn't understand how to peddle a tricycle and liked his videos instead of playing with a lot of neighborhood friends.

We moved from Texas to California that summer.  I found a doctor in CA who believed in this diet (our Texas pediatrician didn't support it or believe in further testing for fungus or yeast build-up in the intestines).  This doctor immediately tested Paul for fungal build up and placed him on and anti-fungal treatment in October 2000.  Again - we saw more DRAMATIC improvements.  More socialization, greater speech development and less self-stimming.  He continued on with his special education pre-school through the public school system in California - but at an annual IEP - the educators said that Paul no longer qualified under the Autism Spectrum - but rather for speech services only!  The teachers and therapists who had never seen Paul at age 3 were in disbelief that he was identified as PDD-NOS!

The diet continues in our lives, and I can tell when contamination occurs......loose stools, itchy skin, and behavior problems.  It is hard - but it has become a way of our lives, and it has made such a difference in Paul's life and his future!

Today - we had Paul's parent-teacher conference with his Kindergarten teacher.  He is in a regular education classroom (with no aides) and is already reading at a high level for his class.  Again, his teacher said she "could not fathom" Paul in a special education class. He is a "typical" little boy - learning, and playing in Kindergarten with other "typical" little kids.  Now he would rather play with friends instead of watching videos, and he plays on a soccer team, takes gymnastics classes and last week he learned how to ride his bicycle without training wheels.  We now see the normal milestones everyday that other parents take for granted with normal developing children.  My husband and I ARE convinced that this diet has changed Paul's life.  It has given Paul the opportunities to lead a normal life and has given our family a semblance of normalcy that wasn't there before.  TRY THIS DIET OR KEEP STICKING WITH IT!

I thank God every day that I found that article......it has changed our lives and I have that magazine in a prominently stored place in our home. 

Joan Jensen

 

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Lewis 
Age 3.2 yrs.
by  Sophi (mother)

How long on the diet: 8 months
What the diet has done for Lewis:

Lewis was diagnosed when he was 2.6. As a baby he was always happy and smiley. He developed normally till he was 18 months - then, after the MMR, lost all his language, his eye contact, his enthusiasm. He developed eczema and had constant diarrhea and his sleep got worse and worse. January 2001 was his all time low. He did not react at all to anybody and seemed depressed and unhappy in his closed of world. He didn't understand any language at all. I felt as if he had died.

I had heard about the diet, but it was not until I found this website that I decided to give it a try. We spend a few weeks slowly removing gluten and casein from the diet. After 2 days he had his first formed bowel movement in a year! He immediately woke up to environmental sounds - noticed a fly flying past, heard the door slam etc. He started smiling at us again and he slept through the night.

After a week some autistic symptoms got worse. He flapped his hands and walked on tiptoes but that disappeared again. We have been very lucky to find a doctor who is specialized in the diet. He helps us with any tests we need done and advices us to any supplement to give to Lewis. After we started Lewis on EnzymAid (Kirkman Labs) Lewis had terrible yeasty diarrhea but then got constantly better. He rarely has a bad day. The diet did not cure Lewis overnight but I feel it made him wake up and become ready to learn.  We now run an intensive ABA program for Lewis and he is catching up in a lot of areas. His receptive language is coming along and he is slowly starting to speak - his eye contact is improving every day.

And he is so happy and cheerful and so alert and interested in the world around him. He loves us and he has started initiating games with us and is showing an interest in other people and children. I know that the therapy is vital but I could not imagine doing it without doing the diet. I can now see a future for my lovely little boy - he is coming back!

Darren 
Age 3.6 yrs
by Stephanie (mother)


My name is Stephanie, and our son Darren age 3 and a half has been on the gfcf diet for 3 months, secondary to a diagnosis of autism.  He is doing really well.  He doesn't seem to miss the "old foods" but  has adjusted to the "new foods".  He has not really started broadening his overall choices yet and is still "picky",  but we're hopeful.

He just started a home ABA program of 30hrs. per week.  Between the diet and ABA,  we've seen a huge difference in his behavior.  He's much more easily contented, happier, and more verbal with greater articulation of words. We're definitely going to keep going on the diet for now.

 

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Child's Name: Kyle
Age: 4
Mom:  K
On Diet: 2 years

I am amazed that there are so many others out there with identical experiences to my own. My son began showing signs of autism with repetitive head banging, temper tantrums and delayed speech. Kyle was just over one year old and I had gone back to school in the education program. He was up all night screaming and when we tried to comfort him he would arch his back and struggle to get away. My husband used to call him "psycho child". It was heart breaking because he was such a sweet baby when he was breast fed. The doctors had no idea what was causing his head banging at so young an age, they wanted to start testing him for autism. By chance I mentioned that he had diarrhea and my family doctor recommended that I stop giving him milk because some babies loose the ability to digest milk temporarily after a stomach flu. He immediately slept through the night after one day without milk. I thought he may be lactose intolerant and immediately cancelled all the tests they were going to put him through (head scans etc..). I requested an appointment with an allergy specialist because we were still having problems with behavior and I suspected dietary causes since the elimination of milk had made such a difference. Of course at age 1 1/2 years old the allergist could not say conclusively what foods were bothering him but he gave me an excellent elimination diet to follow. I discovered on my own that he could tolerate zero milk or soy products. By this time I was done my schooling and I decided to stay home full time to cook his meals and monitor his diet. His head banging had become a behavioral habit and was eventually eliminated by working with an excellent child psychologist.

Kyle is now four years old and I would say that he is a typical little boy. He has been on a strict diet since the age of two. After seeing one family doctor, a pediatrician, and an allergist not one of them mentioned this diet. If only someone could have helped me when I felt so alone with this problem. My stubborn insistence that it was diet related is the only thing that has saved my son from permanent damage. It took me a year of trial and error with many regressions as I tried to figure out which foods caused reactions in my son. Then I had to convince everyone around me that I was right and force them to follow my strict dietary rules.  I now see that I am not alone in my experiences and I am sitting here crying with relief. If you are struggling with these types of issues with your child, give this diet a try. It is completely non-invasive (unlike doctors tests) and the results can be immediate. The earlier you try it the better off your child will be because they need time to catch up with the developmental tasks they have missed.

 

Owen 
Age 4.0 yrs.
by  Sharon (mother)

We recently passed the 6 month mark on the diet so I thought a progress report might help others just starting out.  Similar posts certainly kept me going in the early days!  So here goes
Owen went gf cf  (both at the same time) at the beginning of March when he was 3 1/2.  We were becoming concerned about Owen's behavior at playgroup - and in general - and his lack of understandable speech.  Then I stumbled across a talk given by Mike Tettenborn about the benefits of the diet in ASD and I realized he could be describing my son.  At this time someone told me about AiA so I spoke to Marilyn Le Breton, got hold of her newly published book, and joined this list (GFCFKidsUK). 

Before starting the diet, we did a Sunderland urine test which showed a positive IAG peak but no peptides.  The first 3 days on the diet were hell.  Terrible tantrums.  These were followed by an explosion of drawing.  People with arms, legs and smiley faces burst forth.  Owen had only ever produced one face before - when he was about 2 - but hadn't drawn anything else apart from scribbles since.  The other almost immediate change we noticed was an improved sleep pattern.  A child who was itchy (eczema), restless and waking every night in the small hours for 2-21/2 hrs, suddenly slept through the night.  The next  2 or 3 weeks were tough - and are now a bit of a blur - as Owen went through withdrawal.  But after a few weeks we were rewarded as his speech started to improve.  He was back with us.

At around 3 months into the diet we had a set-back, which is apparently quite common.  Owen had several weeks of diarrhea alternating with "peanut butter" BM's  - pale, lumpy, soft and smelly - and progress slowed.  Candida was my top suspect but as Owen had no other yeast related issues we decided to wait and see before acting.  Next, he was suddenly covered in bad eczema.  Once that went, the BM's improved and Owen started to sleep better again.  He also toilet trained himself during this phase (rather messy, and best forgotten.....but now quite a relief!)

Improvements keep coming.  We have seen, and are still seeing, improvements in awareness and eye contact (now not really issues), speech and language development, calmness, sociability (really wants to be with people), sleep patterns and toileting.  He's now very open to learning in a way I could not have envisioned pre-diet.  And his eczema has gone.  He still has very dry skin from time to time, which we think is related to essential fatty acid deficiency.  And there's the periodic return of the mushy BM's.....

In September Owen had his first gluten infringement.  Red ear, red cheek immediately.  Later on he became silly and hyperactive, and then spacey.  We had about 10 days of markedly reduced eye contact, hyperactivity, eczema and totally disrupted sleep.  Then he had a long, long, long calm sleep and woke seeming a bit better.  It took 3-4 weeks to get over this infringement.  We didn't plan this accident but it's turned out to be quite helpful - there's no room for any doubt that Owen needs to avoid gluten

That's where we've got to so far.  I'm amazed with Owen's progress and feel optimistic we'll see even more improvement by implementing other interventions in the future, such as low sugar/nystatin, and the enzymes.  But the gf cf diet is clearly the bedrock of our success.

Sharon (in the UK) 

 

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Dana's Son 
Age 12 yrs. old
Successful GFCF for 8 years!

Just found this site for the first time, and wanted to offer some long-term encouragement for all of you who are just starting out or who have young children on the diet. My son is now 12 years old. We first started him on a gf-cf diet 8 years ago, after about a year of dietary trial-and-error. Back then, people were just starting to make the connection between diet and autism, and I didn't actually read anything supporting what we'd done until we'd been on the diet for about a year! So we were lucky to have stumbled upon it, to have found out for ourselves that it worked without knowing why. The diet is hard, no doubt about it. But we were scrupulous once we had it all figured out -- and for my son, it's more than just gluten and casein, so we were also controlling chemical, pollen, and dust exposures, as well as other food allergies. We altered our family lifestyle significantly to give him every chance we could. We ALL went on the diet together (well, at home, at least; can't say my husband stuck to it at work!), and I think we all probably saw benefits. 

Here's the hopeful part: we saw dramatic improvement in the Asperger's symptoms right away, like many of you have reported, and then over the years we've seen more subtle improvements. As my son grew older, and, gained control over his emotions and his behavior, we found that he could tolerate the occasional detour around the diet. I firmly believe that the diet/chemical controls we instituted gave him a chance to develop his own behavioral controls, gave him a bit of space to learn and practice. I know that without the diet, his whole existence was centered on fighting fears and confusion. Those days, thankfully, are behind him.

We're still careful about chemical additives and preservatives (it's hard to give in to those once you've accepted that substances like food dyes are BAD for you, period), but I've found that he can tolerate small amounts of gluten and casein on a rotational basis. During peak allergy season we tend to veer closer to a gf-cf diet again, but have learned that after 8 years of diet and nutritional therapy, he seems to have healed, or adapted, or whatever. It's just not the big life-or-death struggle for him that it used to be.

I don't think he'll ever be able to completely ignore his diet. But NOBODY would label him autistic these days. He's a happy, well-adjusted, bright, loving, funny kid. He'd like to eat the junk food that he sees in commercials, but recognizes now that feeling bad isn't worth it -- most of the time. So I'm hopeful that the responsibility for his eating habits is starting to shift from my shoulders to his. Which should mean that as far as the autism is concerned, he has a very good chance to live happily ever after.

May you all be so blessed.
Dana

 

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Kenny 
Age 4.10 years
Sent by mother

Message to the Comment Board,
The Gluten Free/Casein Free Diet has been such a disciplinary journey for my family and my 4 years and 10month old son. My mother always believed that was as important to look at a child's diet first, when looking at behavior modifications, disorders, or things that may seem normal to us now, such as ADD or PDD or ADHD, or something as simply as the "lack of attentiveness". My son is on a pretty strict Gluten/Casein Free diet and as a Mother/Administrator in the educational world, we have found wonders!!!!! Yes, I must say that Mother knows best, because mine did in the case of my son's development and other children within the school.

He has been on the diet as clean as possible, and research can provide, for one year and about three months, to great success. He now interacts with his peers, engages attentively in eye contact and can follow predictable events as well as use language in a way the meets his needs beyond a 3 sentence request. Beyond that, my family has also fought for my sons educational services from our Public School District with a vengeance. It has all worked out and his skills have come leaps and bounds since the diet. 

Every parent should try It. It Does Work, if YOU the parent are willing to work. My son is catching up in so many places socially, cognitively, verbally, interpersonally as far as awareness and far most validating with our relationship and how it has changed, to where he is able to now reciprocate and converse with me...his mother. Never mind the typeoooo's. You to will realize that it is such an exciting transformation to type about, that you to, will make these mistakes and it doesn't matter, because your child is progressing and it is worth sharing.

 

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Austin 
Age 5 yrs.
by Linda Woods (mother)


Hi All -

I should have written this a long time ago to give other parents hope. But better late than never. First let me say in no uncertain terms, THE DIET is the #1 intervention to have helped my son.

Austin developed perfectly until he was about 2 years old. He was barely speaking and was becoming obsessive even though he was very loving and affectionate. He was also consuming an alarming amount of milk - practically the only food he ate. (Some 10-14 bottles a day and yet he couldn't even say "milk" or "bottle"!)

I finally got a doctor to admit he was delayed and he was assessed at age 3 with ASD in May of 1999. (Autism Spectrum Disorder). I was not only shocked by the diagnosis, I was more shocked by the doctors remarks. "There's very little we know about it and very little we can do. Here's some resources you may want to look at, but he will never be OK." Well, there was just no way I was going to believe that or accept it.

I am very internet savvy and in in no time I had found this website, Lisa Lewis' book and a few other encouraging things about the diet. Since no doctors had any other good ideas, I thought I'd give it a try. In no time, his tantrums were better. Soon, he was speaking more words, and learning all sorts of tasks with amazing ease. All his teachers adored him, and with speech therapy and a good small individualized preschool he was making great progress.

In Sept of 2000, (he was 4.1 months) he was assessed by speech teacher using the 1 word receptive/cognitive test. He tested at age 3.11. Wow! So close to "normal" for his age! But get this people.....9 months later, this past June 2001, when he was 4.10 - he was tested again. He was tested again, same test. He tested at SIX YEARS OLD!!  He gained 25 months in 9 months time!!

Anyway, the last thing I want to report is that Austin started Kindergarten 3 weeks ago. He is fully included in a regular Kindergarten where he has an aide. However, all reports from regular teacher, to special ed teacher, to aides, to speech therapists say that Austin is virtually undistinguishable from other 5 year olds!! He is talking, participating, playing, learning, singing, doing crafts and reading!!! It is a miracle.

So, he has been on the diet for 2 years now - and he is SO wonderful!  I am not only hopeful, but certain, that in a few years, my son will not be recognized AT ALL for being ASD. I'm sure of it. :)

Now we're patients of the Pfeiffer Treatment Center,
http://www.hriptc.org/ and about to embark on a new and stringent regime of supplements which should correct other biological deficiencies like lack of B6 & Zinc and other malabsorption problems. Their research is VERY promising. Check it out and I'll get back to you all.

If you haven't started the diet yet. DO IT NOW. Do not wait another day. Your child's life depends on it!  What have you got to lose?

 

Ashley Welsheimer
Age 22 months
Mom: Laura Welsheimer
Only 4 Days!!  Amazing (Please read above note.)
 
You all know as a mom the ends of the earth you would do for your child.  You see your child as this wonderful sweet blessing that God has entrusted you to take care of and love.  But as a Mom you know when something just isn't right or as would prefer to say "typical" for your child and their behavior.  After all, who is to say what normal really is. 
 
Ashley is borderline autistic.  I am mother of 2 beautiful children.  I went to college for Early Child Development.  I am like all of you that have taken the time to research and learn ways you can help your little baby or child.  First, let me say you are already helping, your reading this website and looking for ways to help your little one.  You should be proud of yourself for that.  You are doing what you can so far to help them. 
 
Ashley had little or no eye contact, she played with her toys but mostly to line them up, group them, organize them, stack them, etc. She would open our refrigerator and line up the dressings one by one, she would line up her little people, spoons, crayons, puzzle pieces, balls.  You name it, if it came in a category it would be standing at attention somewhere in our home.  LOL  Very cute actually to watch how her little mind is working but very autistic like.  She didn't want me very often for hugs, she didn't imitate very often at all. 
 
I reviewed Ashley's past and realized she did not have any dairy till about the time when some of her only first words, "doll and baby" disappeared.  Ashley was on allimentrum formula because she had gastric reflux as a baby.  Her only words disappeared for 9 months.  She works with a  wonderful speech therapist, Nancy and early intervention. 
 
I decided why not try the diet.  You NEVER Know!  I knew from what I read that it would not hurt her so what do we have to lose.  Yes, it takes patience, CONSISTENCY and most of the most important ingredient LOVE!   Just Love and that is what guided me.  I decided to just try a casein free diet first.  We have only been doing it for 4 Days, yes four days!  My heart is Melting, my tears are real!   My baby girl is changing before my eyes!  Literally!  I have tears.  She actually looked at me in the eyes and I could feel her really seeing Mommy.  She is talking more, she is imitating being a monkey and butterfly, she is not lining things up as much.  She lunges to me and gives me hugS!!!  WOW!!!  It is a blessing I cant even begin to describe. 
 
My advice is this, why not?  Talk to your doctor if you want but the bottom line is this as long as you make sure they are getting the calcium/vitamin D etc.  Then go for it.  We use Tropicana Calcium no pulp for one of her calcium servings.  Great juice and she loves it. You need to make sure you are prepared for that fact that it may not help.  But you should also be proud of yourself for trying.  You have to try otherwise you wont know.  Its as simple as that.  My heart breaks knowing that if I didn't go for it or research etc, her whole life would be different.  My love and prayers changed her life and it could for you as well. 
 
Many blessings,
Laura
 

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Andrew 
Age 3 1/2 years  (diagnosed August 2000 at 2 1/2 yrs.)
by Cheri  (mother)

Andrew appeared to be developing wonderfully till about the age of 12-15 months, suddenly he lost the words he used to say and completely withdrew.  Dealing with him became impossible, he tantrumed whenever we approached him, drooled constantly and seemed deaf.  Family told us that he was probably having a hard time adjusting to our new house and his new sister, born when he was 15 months old.  

Our Doctor referred Andrew to CDS, where he was diagnosed. At 2 and 1/2 years, we were told he was the developmental equivalent of a seven month old.  As far as socialization goes, it would have been easier to tame a wild animal than to run errands in public with Andrew, or even have someone visit our house.  Six months of speech, occupational and behavioral therapy followed, with no promising results.  A parent in our support group mentioned the Diet, and I remembered reading Karyn's article.  Still, it took another 4 months before I worked up the courage to try it, I regret not trying it sooner.  

On the first day of the diet, Andrew put his shoes on for the first time, we could never get him to use his hands, other than to devour bread, cheese, milk (most of the things he no longer eats).  On the second day, he looked me straight in the eyes and smiled, as if he had never seen my face before!  At the end of the week, Andrew had his first solid bowel movement in almost 2 years. 

Yesterday, he took a forbidden cracker from his sister, and had an explosive runny bowel movement today. An example of how well things are going, now that he has been GFCF for 10 weeks:  we took him to a local church fair, where he rode on the pony; tonight he undressed himself at bath time, washed his hair, got out of the tub and did pee-pee in the potty, went to his sister's room and kissed her goodnight, jumped into his bed and told me about the episode of Sesame Street he watched today. No kidding.

Andrew still has some odd mannerisms (he paces the room and hums when distressed) and his speech is probably similar to that of an 18-month old, but he speaks well enough that our very chatty 2 two year old can understand him.  It gets better everyday.  And just think, it's only been 10 weeks!!! At this rate, I think this is going to be a wonderful year.

 

Nicky's 8 months of GFCF  follows below
Nicky  
Age 3.4 (diagnosed at 3.1)

On diet for 3 months (immediately after diagnosis) When I started the gfcf diet for my son, I linked up to the gfcf page and I must say that the success stories were very encouraging, especially at a time when I sometimes felt there was no HOPE for us and our son. Now it is my turn to give back a little of what was given to me and say the YES, THERE IS HOPE.

Nicky was first diagnosed with autism at 3.1 years. At that time he said single words but basically he was in his own world. I couldn't take him anywhere. The worst feeling I had was that I could not communicate with him. I had no idea about what he thought, felt, etc. The diagnosis simply confirmed my worst fears. After that I felt like I was walking around with a knife in my stomach all the time. It was the worst I ever felt in my life. Fortunately, this feeling did not stop me from acting. The very next day (after the diagnosis) I went to the bookstore to buy every book on autism but I ended up buying only two, Karen Seroussi's book and "Saving Ryan". I read Karen Seroussi's book that same evening (I did not sleep and got through the whole book in one night) and the very next day I took Nicky off of everything that contained gluten or casein! I know that the book suggests going slowly but I simply could not bring myself to giving my son any food if there was even the slightest chance that it was contributing to his condition. Around the same time I started him on speech therapy (4 hours per week) with an AMAZING therapist and lots of play therapy at home. The first few weeks were terrible (for him and us). He went through really bad regression (more screaming, fits, etc.) and he would not eat anything except home made french fries. Fortunately, my husband was extremely supportive (he has a background in biochemistry and he assured me that our son would not suffer from malnutrition even if he ate only french fries for a while). I supplemented with a good multivitamin (in his calcium fortified juice) and we made it through the first two weeks. He lost no weight but I on the other hand lost at least 10 pounds. I asked for help and got it. My husband asked his mother to come and stay with us for a while and she agreed and came immediately. She supported my decision entirely and together we started to work on Nicky's diet. She was very careful about everything she prepared and together we started to find foods that Nicky would agree to eat. It took time but slowly he started to accept gfcf alternatives (after many times of putting something in front of him). I have to say that he must have refused gfcf spaghetti at least twenty times before he finally ate it. The same for gfcf nuggets. Now he devours these and many other foods as well (gfcf sausages, muffins, pancakes, waffles, cereal, fruits, cookies, DariFree, etc.) We are very fortunate that he appears to have no allergies to corn, soy or fruits and now he is thriving on this diet (he really looks healthy and I know he is growing because he has outgrown some of his clothes). He is also on nutritional supplements, (SuperNuThera) and DMG plus extra calcium powder.

NOW FOR THE RESULTS:
Nicky is now 3.4 (on gfcf diet for three months) and he speaks in 3 and 4 word sentences. He yells "It's Mama!" and runs to me and hugs me when I come home from work (I work three days a week). He is very good at expressing his needs. He is responsive, playful, affectionate at home with us and his brother (5 years old). He makes great eye contact and pays attention during speech therapy (and with us too) and he works very hard at everything he does! He makes to most amazing drawings (detailed) and he can discuss what he is drawing. I can take him places. There are still the occasional fits but they are not nearly as often or severe as before. It is a slow and steady process (we don't expect miracles to happen overnight but they are happening over time). He still has trouble engaging in social interaction with other children but this is coming along slowly. He will be starting a preschool in April that will give him additional therapy and opportunity to interact in a group. His ATEC is now 24 (he started at 66). We still have a lot of work to do but we have so much HOPE. That "knife" in my stomach is gone! The other day we were looking at a video and he leaned his head on mine. Then he turned and looked at me (and I looked at him) and he kissed me gently on the cheek. He didn't have to say anything at that moment because I understood exactly what he was thinking. If you are considering this diet, try it, you have nothing to lose. Bear in mind that it is a lot of work and that the progress is slow and hopefully steady. I hope you find this story encouraging.

Nicky's 9 months on GFCF Diet Update 
Nicky is doing absolutely great. He just turned 4 and he can engage in short conversations (2-3 exchanges). He speaks in complete sentences (5-6 words) and he was potty trained about 2 months ago (it only took a week). He plays with his older brother a lot (they fight a lot too!) We continue to have hope that our son will be able to go to a regular kindergarten in two years at the same school that his older brother is attending! He receives 2 1/2 hours of speech therapy per week and he attends a regular preschool 3 days per week. Nicky loves swim, draw trains and play with Power Rangers, dinosuars and Bionnicle, just like any regular 4-year old! 

 

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Olivia   
age 25 months
GFCF 50 days 
by Deborah Milton, Mother

When Olivia was about 22 months old, we learned that she had myoclonic seizures and was accessed as having global delays up to a year behind.  All tests for metabolic and genetic disorders have come back negative. I chanced upon the gfcfdiet website by following a link from a developmental delay message board. Although Olivia has never been diagnosed as autistic, and probably wouldn't be, because she has incredible interpersonal skills, I felt that she had enough of the symptoms of food allergies/intolerances to give it a try.

She's been on the diet for 50 days now and what a difference we can see! Before the diet she was tantruming frequently, often whining and unhappy, somewhat aggressive, had diarrhea a lot (never a fully formed bm), almost always had a diaper rash, circles under the eyes, and only said about 5 words. She now says over 50 words, has fully formed bms when we keep all offending foods (and we've found many not listed with the gfcf diet) out of her system, and is calmer, and happier. We never did give Olivia much dairy (she got diarrhea from cow's milk), so that wasn't too difficult to do, but the gluten-free part has been a challenge, but very worth it.

She has had some days where her behavior has regressed terribly, so I've gone back to look at the list, only to discover that there was a trace amount of gluten in the brand of rice milk I was using, or a bit of butter in the cookie I'd given her that morning. So, I would encourage any of you parents on the fence about starting this diet to START TODAY! My child doesn't even have a diagnosis and she's responding. This diet could be good for all sorts of disorders.

Deborah Milton

 

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Aaron 
age 2.6 yrs.
GFCF 11 weeks
by Anne,  mother

Aaron is 2 1/2 now and I have had him on the diet for 11 weeks now. Within the first week we noticed better eye contact and a calmer child. Aaron ceased to be severely constipated to the point of bleeding, rather he has a regular bm each day.

Aaron would say words prior, but you would only hear the word once, then never again. Aaron has been counting to 3 for the last few weeks and just last week he told me "I love you". Praise God! He is saying the colors and numbers and recognizes some of the letters. Aaron has been doing lots of copying what we say and is starting to say words on his own.

All along we knew there was more going on in that head than we know by outward appearance. Shortly after we started the diet, Aaron's grocery store tantrums were greatly shortened and he rarely has a fit in the grocery store anymore except when he is over tired. Whining is few and far between now and he actually pointed to a dog on TV and said dog, and he pointed to the moon and said moon. 

We are so excited at what the Lord is doing for our boy. Aaron has been allowing his little sister to get closer to him and she actually crawled across his lap recently without the least gesture of disapproval. I pray for their relationship to improve. This diet has done wonders for my child. At the onset I had to make a commitment to either do it all the way, or not do it at all.

Within 3 days I thought my boy would starve just eating potato chips. But the change in his behavior was so dramatic that both my husband and I signed on. These have been real hard times trying to find out what he will eat. I am finally able to bake a loaf of bread that he will eat. I reasoned that Aaron would only eat a handful of foods before the diet and if that remains to be the case afterwards, then we are in the same position. 

Aaron will always tear up a bowl of mashed potatoes. He has gotten to like sweet potatoes fixed like mashed potatoes. He also eats cooked whipped great northern beans and pinto beans right out of the can. So my advise to anyone trying this would be to make a commitment to stick with it at least 2 weeks and once you see the change in your child's behavior, you will not turn back no matter how difficult and frustrating it gets.

Name: Rachel
Age: 25 months
On diet: 6 months
By mother: Beth

Rachel's story seems like a miracle to me. I started noticing something wasn't quite right around 17 months. There was really no speech developing (besides mama  and dada) which didn't bother me as much. It was more her lack of interest in the things around her and off and on spaciness. She just didn't seem as happy and animated as her big brother had been at her age. When my research kept leading me to autism, we immediately tried to set up appointments to have her evaluated, only to be told over and over that it would take x months to get her seen. That was the worst time of my life, a grief I cannot explain. But, thank God, something gave me the strength to plug along and find out everything I could about this thing called autism. 

That's when I read about the GFCF diet. After reading all the success stories, my husband and I couldn't wait to try it. We felt so helpless at this point, just muddling through every day until her evaluation appointment. We didn't need a doctor or therapist or anyone to get started on the diet. This was the only thing we could do at this point to possibly help our daughter.

We took both gluten and casein away at the same time (we were desperate to make her better).  Coincidentally, the developmental pediatrician called with a cancellation 3 days into the diet. And believe it or not, we had already started to see small improvements. She actually pointed at something for the first time and just seemed a little less spacey. The doctor diagnosed her PDDNOS that day, which didn't surprise us. She had turned up sick that morning which I now realize was probably a reaction to the change in diet. But we knew we were onto something with this diet. Within 1 week, she was much happier, much more alert and in tune with what was going on, babbling constantly, and pointing like crazy.

Well, it's been 6 months now and I cannot begin to describe my joy. Rachel has been evaluated again several times in the past six months, starting just one month after the diagnosis (and one month into the diet). Every single person has said they do not think she is anywhere on the spectrum. Some have even told us that there is no way she really could've ever had PDD because these children don't get that much better and especially not that quickly. Well, that's because they must not believe in the diet

My husband and I have no doubt the GFCF diet saved our daughter's life. We also put her in daily ABA therapy to teach her the skills she hadn't learned. Rachel is an absolute miracle. She is a little bundle of energy, so happy and silly and doing all the things a typical 25 month old likes to do. She still has some delays in speech but her language is emerging now so quickly. Our little fireball even had the gumption this past weekend to tell a 12 year old boy who was playing with a toy she wanted to "Share! My turn! Share!". 

We are starting Rachel in a typical preschool this Fall. I truly do not think all of this would've been possible without the GFCF diet. If you're on the fence about trying it I hope this helps. It's hard at first but after the first couple of weeks it's really not a big deal at all. The rewards far outweigh the temporary insanity of the first week or two. Please just give it a try.

Thank you so much! You've saved our daughter's life.

Beth


 

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Name: Kaitlyn 
Age: 2.6 years 
On Diet: 6 months
By mother: Chris


It's so hard to even begin.  I guess first off I need to say that this diet has produced miracles in our daughter Kait.  Kait developed normally until around 16 months when she began losing speech and quickly slipping into a world of her own.  For a long time I tried to believe friends, family and even her pediatricians that it was just a speech delay or maybe even hearing loss - but my instincts told me it was more than that.

At around 21 months I started suspecting Autism.  I casually brought it up during one of Kait's speech therapy sessions.  Kait's therapist said she suspected it too.  I felt suddenly overwhelmed, sick and alone.  It was probably one of the lowest days of my life and yet one of the best things that could of happened to us.  I went into information overload, scouring the internet for any bits and pieces of information that I could find beyond what I already knew. 

I came across the GFCF diet.  I think I stayed up half the night reading the success stories.  No one was selling anything and I was willing to try anything that might help.  We began it immediately, brushing off everyone who said that Kait might starve or be missing out on all the "good stuff".  In just 24 hours we noticed a huge difference by just removing the milk.  She seemed more alert, happier and even showed her first ever sign of imaginary play.  It seemed too good to be true - but it was enough for me to go full force.  We then removed gluten and soy
*Note: See below. The first few days were the worst - just because I was so new at figuring out what in the world she could eat - but rest-assured it becomes easier and now is second nature to all of us. 

Kait's autism came upon us so quickly.  Before the diet she started displaying all the classic signs plus some other odd behaviors.  She was spinning, flapping her arms, walking on her toes, grinding her teeth, doing some eye stims, practically pressing her nose to the TV, scratching the walls and worst of all were the tantrums that could literally last for hours.  She would throw herself onto the floor, bang her head and kick the walls, it was horrible to see and I wondered what her future could possibly hold.  She refused to be held or touched and seemed not to even notice if I left the house.  She did not communicate with us at all.

That was six months ago and today Kait is a different little girl.  I can honestly and happily say that the above is now just a bad memory.  All of the behaviors have stopped (well except for the occasional tantrum when she doesn't get her way - but I guess that's a two year old for you!)  She began communicating with us about a month into the diet and now is speaking.  She is not up to where she should yet be for her age, but her therapists tell me that she is getting there quickly!  They also believe that she would no longer be diagnosed as autistic if evaluated.  This diet has been a life saver and I can't recommend it enough.  Kait's future now looks promising and bright, I think she's going to be okay.

Thank you - this diet has changed all of our lives! -Chris

*Note:  It is not necessary to remove soy when starting the GFCF Diet, unless a soy intolerance/allergy exists.

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Name: Deanna 
Age: 20 months 
On Diet: 6 weeks
By mother: Denise


Hi, my daughter Deanna was diagnosed on the autistic spectrum January of this year (2003). Though I was dying inside I knew I had to pull it together and get her therapy set up. I then did a lot of research and learned all I could. 

I read about the dairy and gluten free diet and I felt that I had to give it a try. So I started the GFCF Diet along with her other therapy, Early Intervention and ABA Therapy. She started talking away and requesting things. She finally noticed other children and recently our own dog.   However, I began to be convinced I had jumped the gun and put her on this diet which she really didn't need.   I thought the positive improvements I saw in her was from Early Intervention and ABA therapy.  

Well anyway I had seen nutritionist and a GI doctor and I just wanted someone to tell me she didn't need this diet. She never had any sleep issues or rashes, she switched from formula to milk with no problem.  Well the GI doctor gave me the ok, he said lets put some gluten back into diet.  It's a lot easier to keep dairy away. 

Well the first two days she was fine. I was so happy my daughter could have munchkins again.  Then slowly I noticed her getting withdrawn and her eye contact was definitely not as good.  Anyway, she was no longer requesting anything but while she was on the diet, she had started asking for things. It was awful to see her go backwards. I got her right back on the diet and within 10 hours you couldn't believe the difference. I'm convinced now.  I'm on a mission to make this diet a success for her.
 
I put my daughter through so much in a short period of time but she is now doing so good.
I have no doubt that Deanna will grow to live a normal life. This is a parents worst nightmare but now I know the diet is helping my daughter. I know we're going to make it!

THANK YOU,
DENISE
 

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Name: Savannah
Age: 3 yrs. 3 monts
On Diet: 3 months
By mother: Anita Healey
I just finished reading the gfcfdiet website information and I am so excited!  I never realized how many resources are available!!!!  My daugher was diagnosed with Autism PDD NOS in October.  After the intial shock I was sent into a whirlwind of observations, assessments and doctors and the list goes on and on.  I read Karyn Seroussi's book the same weekend I went to my first autism conference.  I was relieved to read other stories from parents who were moved to tears as I was.

For Christmas I received both "Special Diets for Specail Kids" books by Lisa Lewis and starting January 1, 2003 our home became gfcf only!  I am a single parent and so the transition was not disputed by other family members.  My daugher has responded beautifully to the diet!  She no longer hits herself in the head, screams, or has constant constipation.  She still self-stims by hand flapping but not as often and she is still nonverbal which is a constant frustration for both of us trying to communicate.

 I realized I have LOTS to learn ane I am up for it!!  I now know that I am not alone and that other parennts have "been there".  It is comforting that there are so many peoiple out there--My only regret is that I didn't reach out sooner.

 THE QUEST CONTINUES !!!!!!!!!

Thank You,
Anita Healey




 

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Name: Harrison
Age: 28 months
On Diet: 3 months
By mother:
Tiffany Whitmore

Hello,

Our son, Harrison, was our third born and was developing normally until he had his MMR shot at 18 months. We realized he started losing speech and wasn't  socializing with his older siblings anymore. He was weaned from breast milk at 7 months, and soon after  he was on regular milk and vomited every single day. He had eczema and was, well, crabby. (I guess if your body is sick, so is your attitude!) He had loose stools, and they were extremely foul smelling. (I had other children, so I did have a good point of reference!)
Well, it was time for us to start research.. we took Harrison to several doctors, and one said he was "severely autistic" and another said, "mild pdd-nos".. we feel he's somewhere in the middle.

After the tears, the denial, the anger .. we got to work and learned about the gf/cf diet.  We realized that he was only 20 months old, and the potential for help was best if we started right away. We removed dairy first, and you know what? He completely stopped vomiting! This was a major thing for all of us. He then started to imitate more, and was happier. We then stopped with all wheat etc.. no gluten. We soon saw even more positive effects, he skin looked better, his poop looked better, and he was sleeping soundly. We are SURE that the diet makes a difference and it's worth the work, the effort, the challenge. After all, if you're reading this right now, then you're up to the task! It takes time, and we all make mistakes .. just be patient with your child and with YOURSELF, this is a trial for your whole family.
Harrison's DAN doctor also removed soy and corn (elimination diet) just to see how he would respond, and he did so well that we're keeping him off those for now too. We are positive that the Gut is linked to behavioral and cognitive issues. It can take time to see the difference, and it's usually slow and steady.

We are so grateful for the gfcf diet website and to all the great support we've come across on this site. We know that Harrison is going to thrive and do more and more in time.
Good luck and Godspeed to all of you!

 

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Name: Alec
Age: 5.6 years
On Diet: 4.6 months
By mother:  Shelly Ansaldi 


Alec is 5 1/2 years old and has been on the diet for 4 1/2 months completely. Alec was diagnosed at 4.3 years old to be on the autism spectrum. We knew something was wrong around the age of 3 but were told by his pediatrician at the time that he had 'auditory processing issues' and that he was not autistic. We started him in a special education Pre-school program based on his speech delays and fine motor skill delays.

He began this program in March of 2000 and it seemed to help him somewhat but we knew that there needed to be something else we could do for him. In his second year in the Preschool program his new teacher was brazen enough to mention autism to us and advised us to get a developmental Pediatrician to test him. We began the long, frustrating wait for an appointment-the shortest waiting list we were on was 9 months. Meanwhile the school system did an excellent job of helping Alec to come out of his own world. He thrived on the structure that school provided and made friends. 

Alec was finally diagnosed and immediately started going to school for full days. It helped him but he still had many areas of difficulty. Based on research on the internet and word of mouth, I discovered the GF/CF diet. I read Karen Seroussi's book and broke down crying several times as she seemed to be describing Alec. I was hesitant to put him on the diet as he loved dairy products of all kinds. But the more research I did and the more seminars I attended it seemed like I needed to try it and see if Alec responded. 

I began by removing casein when Alec was 4.10 years old and then gluten completely 4 months later. After removing casein, Alec immediately lost the dark circles under his eyes and his pale complexion. He also stopped needing inhalers for his 'asthma' induced coughing. His eye contact increased dramatically as did his speech. He suddenly seemed to realize he had a little brother and began to play with him. He stopped slapping at his own face and head and didn't crash nearly as much. After removing gluten, it was as if we had a new child. He was much less aggressive and completely verbal. His social skills increased dramatically and he was now able to play appropriately with his friends and his little brother without trying to grab their faces and such. 

He saw his neurological doctor a few months into the diet and she could not believe the change in him since June. She even advised that she would not be surprised if he lost his label within a year. His Occupational Therapist broke down and cried reading his reports from school and now tries to gently suggest the diet to other client's families. His supports at school are beginning to be eliminated slowly. Especially his one on one Paraprofessional support.

Alec does so well on the diet and knows to ask if he is not sure if a food is okay. Unfortunately, my younger son's teenage babysitter gave Alec a Chip's Ahoy cookie recently. I had stupidly not informed her of his restrictions. I was to be gone for a short time and had set Alec up with his special snacks and advised her not to give him anything else to eat as we were going to have an early supper. Alec took the cookie thinking it was okay as it came from a cookie jar I usually use for his cookies-another stupid mistake on my part. Boy am I now firmly convinced without a shadow of a doubt that this diet works. That evening after eating the cookie Alec was completely off the wall. First of all, he had a bowel movement in his pants-he has been completely trained for over a year and a half. He was hysterically laughing over nothing. He was face slapping himself and crashing constantly. He was also running in circles and completely non-compliant. All in the same night that he ate the cookie. We were mystified and disheartened until I realized what had happened. 

The next morning I asked Alec if his babysitter had given him a snack after I left. He replied 'yes, I had a cookie out of the smiley-face cookie jar and boy was it good mommy! I warned his teachers about the contamination and they replied back that Alec was definitely not himself at school and was distracted and spacey. Over the past few days he is showing signs that he is coming back and I am so relieved. I have given him some extra enzymes so maybe that is helping. 

I am so firmly convinced that this diet is so important to undertake and strongly urge anyone with an autistic child to try it at least. You have nothing to lose and so much to gain. I am also so grateful for the GF/CF website. It is a wealth of information and truly a godsend to anyone undertaking the diet. There are a lot of foods your child can eat on the diet and they are all listed on the site.

After Alec's contamination I had a talk with him about why it is so important to eat only the things that we make for him and give him so that he won't feel the way he felt after eating the cookie. He looked at me with his big brown eyes and said 'Will I be okay again Mommy?' I held back my tears and assured him that he would be fine, just fine.

 

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Name: Andy
Age: 5 1/2
On diet: 9 months
Mother: Rebecca


Andy was finally diagnosed one year ago.  It took us a long 2 years and several doctors to get an answer.  I was very skeptical about this diet. It was hard for me to believe that changing what my son ate could really make a difference.  I have never been so wrong in all my life.  Immediately the dark rings under his eye disappeared, his swollen stomach went away, and his bowel movements were normal. He started to notice everything around him and finally started to play with his brothers.  For three years we tried to get him potty trained and within two weeks of being on the diet he was successfully using the bathroom at home and at school.  In the 9 months he has grow 3 years developmentally and is talking.  Thanks to this diet and lots of therapy, I have my little boy back.  Through this experience I have shed many tears, but none were sweeter then the one's I cried when Andy sat on Santa's lap this past weekend and told Santa what he wanted for Christmas! 

REBECCA

Name: Claire
Age: 2 1/2 yrs.
On diet 1 1/2 years
By: Mother- Nicole


Claire has been on the gfcf diet for 1 1/2 yrs. Claire showed signs of infantile autism @ early age after a hospitalization due to RSV @ 3 weeks old. When she began to drink milk @ age 11months is when the symptoms increased (rocking in a corner and hand flapping). She started the diet @ 12 months old, within 24 hours, her chronic diarrhea stopped and she had her first formed stool diaper, her eczema disappeared, within 1 week she made eye contact, slept through the night, took naps (she used to nap for only 15 min.) hand flapping @ rocking stopped, and her speech went from a 4 month age level to 9-12 month level in 3 weeks. I am happy to report that @ a recent visit with the autism clinic @ a university she was considered recovered. She no longer meets any of the diagnostic behaviors/symptoms for autism categories. I also want to report that Claire not only  did the diet, but has received therapy since she was 8 moths old (PT, OT, Speech, Developmental) I feel the diet lifted the fog she was in and the therapy helped her to learn the developmental skills she missed. I can not express the joy in seeing my little girl play with other children, or when she wants me to hold her or the first time she pointed to something in her environment. I know the diet does not work for all and not everyone has such dramatic results as we did, but it is worth a try. I wish this tx option would reach parents early, I do think Claire responding so well because of her young age(12 months) and I also decided to hold off on the MMR shot due to her weaken immune system due to RSV. Did this have a role in Claire's ability to recover, would the shot have pushed her over the edge, I have no idea.   What I do know is that we will continue the diet.  


 

(Update)
Name: Kenneth
5 1/2 years old
GFCF since June 2002
by: SheliaRae-Ken's mom


In July of 2002 I sent a letter regarding the use of the gfcf diet with my son Kenneth. We are still reaping the rewards of our change in his diet. Kenneth is in a general education kindergarten. His teacher from preschool 2 years ago saw him in his kindergarten class this fall and couldn't believe the change in his behaviors! We had a slight infraction today-Kenneth just had to have Burger King french fries for lunch-NEVER AGAIN!! By bedtime he was very hyper-couldn't sit still for one minute! Our FORMER pediatrician told as as long as we THINK the diet is working that is what counts. My response was "I don't just THINK the diet is working I KNOW the diet is working" and we have since switched to a pediatrician who understands the relationship between a gfcf diet and autistic symptoms. If you are thinking of trying the diet but think it takes too much effort-believe me it is worth every bit of the effort that it takes. It seems that the longer he is on the diet the easier it becomes. So give it a try-you really have nothing to lose and your child has everything to gain.

 

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Name: Angela
Age: Seven
On diet 2 1/2 years
By: Mother: Karen


The gfcf diet has helped my daughter immeasurably.  Her development has been phenomenal, amazing and some would say incredible since she started avoiding gluten and casein.  I highly recommend the dietary intervention for a child with autism and behavioural difficulties.  Angela is happy and likes the food which she senses is best for her.

At four years old Angela was diagnosed as having autism and her behaviour was so bad that she was excluded from school.  Her statement of special educational need arrived the following month.  By then she had been on the diet one month and was already so much calmer that the statement described  a different child.  Angela started at a different school.  The teacher noticed when the diet was infringed and was 100% convinced that the diet helped.  I have to praise her for the attention she gave and for observing the change in behaviour.

Name: Kenneth
Age: 5 1/2 years
On diet: 2 months
by : Mom-Shelia Daniel

To put it mildly I was very skeptical when I first put my son on the gfcf diet. The last straw was when I had to go into a moonwalk at the carnival and physically drag him out. Kenneth had been doing very well the whole day until....he ate a lunch of hot dog with bun and ice cream sandwich. I decided that it would be worth a try, came home and ordered the diet packet that afternoon! Within 2 days we saw dramatic results. No more toewalking, less frequent and less severe meltdowns (the meltdowns were actually just little temper tantrums!!). When I put Ken to bed the second night he actually gave me a kiss and told me he loved me for the second time in 5 1/2 years. This alone would be worth the work that the diet entails.

I'm only sorry that we waited so long to get started! Now it has been two months. We have had one infraction since beginning the diet-whew we will surely be more careful!! Kenneth is willing to try almost any new food or drink that we offer him. He will tell the cashier at the health food store that "I can't eat gluten or casein because it gives me a heart attack"!!!

It was reassuring to know that he is understanding the link between feeling "Yucky" and eating gluten or casein. Thank you so much for the best thing to happen to us in 5 years!!
 

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Name: Kenneth
Age: 5-1/2 years
by Sheila Rae
On the Diet for 3 weeks

Wow!! Where to begin!!  My son was diagnosed with Autism/Aspergers Syndrome just last year.  He has been in a Pre-Primary Impaired classroom for most of his life.  They did wonderful things for Kenneth but still something was missing.  When I first heard of the GFCF diet I was quite skeptical-to say the least.  Finally at my wits end (and when his teacher mentioned ritalin) I decided to give it a try. After all I had nothing to lose except a few bucks and everything to gain.  Well let me tell you what an incredible difference this diet has made in our lives and especially in Kenneth's life.  We have only been on the diet for 3 weeks and already we have seen much improvement.  We have not had a major meltdown the entire three weeks-we have had a couple of small ones-nothing compared to before GFCF. Kenneth was able to calm himself out of what would have been a MAJOR LEAGUE meltdown in less than 3 minutes. Before GFCF these lasted 15-20 minutes or more.

Ken has calmed down immeasurably-no more jumping off the couch, no more toe walking.  Best of all, my son who in five years had said "I love you mom" once has now said it almost everyday  since he began this diet. He is now also able to give and receive kisses!

The diet hasn't been near as much work as I thought it would be.  Kenneth and I are having loads of fun shopping for his GFCF foods.  He tells everyone in the grocery store that gluten and casein "give me a heart attack". We have put a pantry in our kitchen and appropriately it is called "Kens Kupboard". Everyone in the family is welcome to eat from this cupboard but Ken knows that he may eat anything in there without compromising his diet. I was concerned that it would be hard for Ken to deal with eating differently than he was used to but he has been a little trooper.  He has asked me many times during the last 3 weeks "Please don't feed me any gluten or casein mom. It will make me sick.

Thank you so much for all of the info and all of the success stories at this site for that is what helped me decide to give a GFCF diet a go. It is truly a blessing to have this site to go to.

Name: Baxter Berle
Age: 3 yrs 1 week
On the diet: 6 weeks
By: Julia Berle


What the GFCF diet has done for my child is nothing short of miraculous.  his speech therapist is telling all her other moms about it.  His compliance, eye contact, speech, imaginative play...you name it it has improved.  His preschool was balking at accepting him for summer school for 3 days.  Last Friday they said he could come 5 days if we wished!  They called the turn around "night and day!"  We had an infraction a few days ago and we are still paying the price.  He is also on Nystatin for serious Yeast issues...this may be helping as well.  I'll keep you posted.  Thank you for your site it has been MOST helpful.

Julia Berle

 

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Name: Cullen
Age: Just turning 6 years
On the diet since July 2001
By: Julie & Brian Galbraith


As a baby, Cullen met milestones quickly. He sat up and walked quite early. At one year he could sit through countless stories while laying with us on the bed. His concentration was phenomenal! His language, however was nonexistent. By 18 months he could identify most letters and numbers by pointing, and at 22 months he was arranging letters in order. Speech intervention brought words and echo-like phrases, but he was still very limited. (In my opinion its extremely important to note that he was rarely given dairy products and had always been on soy because we chose that after a bad case of eczema as an infant.) We never sought a formal diagnosis because at the time, we didn't think any thing was wrong with our "genius" son.

Always with strong encouragement, Cullen learned most of the developmental tasks that are expected of toddlers and pre-schoolers, like potty training (day-time), getting dressed, and cleaning up. However, he lacked interest in what others were doing, he was severely obsessed with media characters, and he sang constantly. You could not hold a conversation with him, nor would he usually give eye contact. Never would he say "I love you Mama," unless we prompted him to do so. His language was a set of rehearsed phrases.

After beginning the diet, within 2 days, he proclaimed to me as I was leaving one day, "I love you Mama! Bye!" On day 3 he stopped soaking the bed at night and has not done so in 10 months (gluten infractions will cause him to wet at night). He quickly gave us eye contact and began to question things. He noticed a bandana in my hair and commented on it. He wanted to help fix breakfast, too. He also became more aware of his peers. Slowly, over the past year, his sensory issues have dissolved; he no longer covers his ears at loud noises or "scary" movies, he handles water on his face, and doesn't become "over-stimulated" as easily. Luckily, Cullen still possesses the amazing cognitive abilities he had prior to the diet. He reads constantly and has a perfect visual memory. But unfortunately, he still prefers to play alone and doesn't always enjoy crowds and gatherings. We are still working on the "rules of give and take" in conversation. He still is very interested in media characters and still loves to sing. There are times when a simple task like clearing the table could take him 10 minutes because he'll get distracted with a song or visual imagery. We continue to remind, reward, and remind.

I feel positive that over the next few years he can regain the language that he "lost". I also believe that the progress he has made since we went gfcf is completely due to the diet. Although difficult at first, the diet is now part of our lives and he readily accepts that. There is no doubt in my mind that he would not be so high-functioning today if he had been given cow's milk at such an early age. If you're considering the diet, read and research and then gather all of your enthusiasm and optimism so that you're equipped to dedicate all of your efforts to "making it work". I almost feel like there is no choice...this is the way it must be. Ignore criticism from relatives, day-care providers, and physicians. Seek support from natural food stores and bulletin boards.

(Editor's Note: See our Community Bulletin Board for local support.  Join the GFCFKids forum, membership is over 12,000 members!)

 

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Name: Brandon
On diet for six years
Age: 11 years old
By: Kathryn


The diet has given Brandon a life.  He had little language, no social skills, no learning ability, and could not control his anger.  He is now a very talkative boy who has amazed us at every turn.  Never put limits on a child's ability.  Brandon has gone beyond all of our expectations and the higher we raise the bar the higher he jumps to hurdle it.  He goes to jr. high next year and has never been in a special ed. class thanks to this diet and a great school.  The child who lived under his coat and scribbled everything black now functions at grade level in most subjects and sang "The Star Spangled Banner" in his school play.  This has not been without a lot of hard work and other therapies but the diet is his foundation that allows everything else to be effective.  Brandon will always be autistic and face the challenges that being autistic brings, but Brandon can now reach for the stars and sometimes he can touch them.

The following three letters are from Paul & Judi Newman who have kept in touch with us about the progress of their son who continues to be on the gfcf diet. note: their son is also intolerant to soy (sf)

Name: Leo (dx: autism)
Age: 34 months
On the diet since February 3, 2002
By:  Paul & Judi Newman

Our son is Leo. He is 34 months old and he is Autistic. Leo was diagnosed on January 9, 2002, nearly three months ago. When he was diagnosed, Leo had experienced almost one year of chronic diarrhea and horrible eczema, he had no eye contact, he would not acknowledge my presence, he could not tolerate other children in his presence, he had lost his vocabulary of 25 or so words (at about his 2nd birthday) as it had dwindled to about 5 grunts and squeals, he stimmed constantly, he had violent tantrums daily that would last for HOURS at a time...his life, his brother's (Forrest 7--ADHD/OCD), and ours was a living nightmare.

On February 3 we found
www.gfcfdiet.com and learned about this amazing diet and started immediately. After 5 days his BMs got a little better and we identified soy as another offender, then after 2 more days, by now gf/cf/sf, we had our first formed BM in almost a year, the eczema began to clear up, he made eye contact with us and looked puzzled--as if he was trying to figure out who we were, he engaged us in play, he re-acquired a phrase "thank you" that he had lost, he began to echo sounds and decreased his grunting and squealing, the tantrums decreased from hours to minutes and he seemed genuinely happy for the first time in months.

Today, nearly four months later, Leo has no diarrhea or eczema, he makes extended eye contact, he use dozens of words, he tolerates other children (although he doesn't parallel play yet), he stims much less, and his cognitive development has gone through the roof! Leo is still, and always will be Autistic. He still has meltdowns. He still tiptoes, handflaps, and twirls his hair. He still has sensory issues. He still gets frustrated over his inability to communicate with the world. But he IS better. Life for all of us is less chaotic. We have hope now that the fog has lifted. This gf/cf/sf diet is REALLY HARD, but it sure does pay big dividends!

 

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Age:  37 months
Name: Leo Newman (dx: Autism)
On diet for 6 months
By: Paul & Judi Newman

Autism kidnapped our son Leo when he was about eighteen months old, during the long winter of 2001.  Leo began a downward spiral for which there seemed to be no bottom.  Then the diagnosis came a year later, January 9, 2002.  The doctors and most medical literature offered us little hope.  "As far as we know right now," we were told, "Autism is a disorder without a cause or a cure."  What a devastating blow.

For the first few weeks we grieved the loss of the neurologically typical little boy we thought we had, while arranging for his behavioral, speech, and occupational therapies.  We consigned ourselves to treat the symptoms.  Then, an incredible thing happened.  Our county service coordinator suggested dietary intervention.  We immediately went to the web, found
www.gfcfdiet.com, and read the "Success Stories," every single one of them.  HOPE!  That was enough to convince us that the diet was worth a try.  We found every web-site we could on the diet, read Karyn Seroussi's and Lisa Lewis's books, read the research of Paul Shattock, Bernard Rimland, Bill Shaw, and others, and then got started on February 3, 2002.  We eliminated gluten, casein, and soy.  In only a few days Leo returned to us.  He still carried tremendous delays and stereotypes, but he was home.  He could look us in the eye, recognize us, and engage.  The diet helped him to engage his therapists as well, and has allowed them to do spectacular work with him.  Our whole house became gf/cf/sf.  It continues to be hard, but IT IS WORTH IT!

O n our last post, April 25, 2002, we reported that the diet had cleared up Leo's chronic diarrhea and eczema, and that his eye contact and verbal ability improved.  Well, it's been another 3 months, 6 since we began the diet, and Leo continues to thrive.  His vocabulary is now over 200 words, he uses dozens of phrases, and he points to objects and names them without prompting: "Look, I see a sine-o-saur (dinosaur)."  He still throws tantrums, but they lat minutes not hours, they come when he is angry or upset over a particular situation, and many times he can solve the problem or ask for help.  He still stims, but now it comes in
the form of verbal stimming, tip-toeing, or covering his ears instead of head-banging and head-dragging.  While he is still far behind his peers in language, he has "caught up" in cognitive development, he is much more sure-footed, and has nearly caught up in fine motor.  Leo still obsesses on particular toys, but his favorites have widened. Leo still engages in a lot of repetitive behavior, although most of it is positive now and not negative.  Yesterday we played catch for 45 minutes! "I-needa ball.  Frow!"  Repetitive?  Sure, but I'll take it... it beats the days when he could not acknowledge my presence.  Leo still does not play and interact with other children at an age appropriate level, but he enjoys the company of other children now.  Tomorrow will be his first day of pre-school (a special needs classroom).  We would not have dared to imagine pre-school for Leo six months ago.  Today we are excited!

At the advice of our developmental pediatrician (healthy skeptic, but supporter), we re-introduced gluten to Leo two weeks ago at the six-month mark.  What a DISASTER!  He instantly reverted to the screaming, incoherent, distant, unreachable child with sour smelling diarrhea and horrible sensory over stimulation.  He ate ONE HAND-FULL of sugar-free cereal with gluten and he'd been kidnapped again.  Five days later he woke up in the morning and came into our room and said "Hi Momma, hi Deee! Downairs ... fuhfest ... cerwul?"  Leo was back, verbal, and hungry for the first time in days.

Perhaps the gluten experiment was not a disaster.  As a result, we are now more convinced than ever that this diet can help Leo combat the effects of Autism.  We have begun new discrete trials to determine if other foods, particularly those high in phenylalanines, are offensive to him.  Over the last six months, Leo's behavior has peaked and valleyed.  Perhaps further dietary intervention can help maintain the peaks and fill in the valleys.  We will also begin using Nystatin in the coming weeks.  Leo's immediate reaction to gluten is a red flag to us that though we may have starved the yeast fungus, it lives in him still.  We'll post back in another three months to let you know how he's doing.

In the meantime, PLEASE try the diet.  You have ABSOLUTELY NOTHING TO LOSE.  Not all children respond to it but most do.  Yours could be one of them

 

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Age: 4 years
Name: Leo Newman
On diet: 18 months
By Paul & Judi Newman


It's been a year since we have had the time to write about Leo's progress on the GF/CF/SF diet.  So many things have happened, all of them good, that we haven't had the time to write.  Eighteen months ago Leo was diagnosed as being "severely autistic."  He had virtually no speech, no social interaction, constant stimming, and daily diarrhea, diaper rash, and eczema.  The diet immediately began to alleviate those symptoms and saved Leo from further neurological damage.  Because of the diet, we today have a meaningful, reciprocal relationship with our beautiful son.  Thank you gfcfdiet.com.

During the last year, Leo has slowly built on his vocabulary, which now consists of thousands of words.  He is verbal 90% of the time.  His articulation leaves a lot to be desired, but every single time we ask him to repeat himself, he does so until he pronounces his words correctly (or at least better).  Leo is as determined to speak as we are to help him.  His speech was evaluated at 28 months in April, a gain of 20 months in development in a 12 month period.  He's truly inspiring.  In the the last year Leo has caught up and is age appropriate in his fine motor and gross motor skills, and we said goodbye to his occupational therapist last month.  Leo still stims, but it is verbal stimming half the time, and the other half involve stomping his feet and "dancing."  You can still pick him out in a crowd of other four year olds pretty quickly, but when not around his peers his behavior is not as obviously autistic as it was a year ago.  Leo is a very smart little boy, and his intellectual development is now age appropriate.  His social skills still lack, but he is now interacting with children his own age in appropriate ways, and just last month the most incredible thing happened...he lied.  That's right, he lied!  We never thought we would rejoice when our own child fibbed right to our faces, but we did.  He wanted to play with a toy that his brother had, so Leo came to us and said "Forrest hit me, Forrest go time-out!"  Leo didn't know that we saw the whole thing and that Forrest never touched him.  Not bad for a kid labeled "severely autistic" eighteen months ago. 

Leo went to a special education pre-school 2 days a week last year, and had special ed, speech, and occupational therapies in the home, in addition to sensory integration therapy at our medical center.  This year he'll go to school 4 days a week, half-days, and still receive special ed and speech in the home.  He has a Therapeutic Support Specialist assigned to him 40 hours per week.  Without the diet, we doubt that any of these therapists would be able to reach Leo.  The therapists all agree, especially those who knew Leo before he started the diet.

As a family, the diet is part of us now.  We know exactly what to eat, where to find the right foods, and how to prepare them.  Everyone in the family is GF/CF/SF and we haven't had a violation in more than a year.  It took a good six months to fall into a rhythm, it's expensive, and it is definitely NOT convenient...but, it has saved our son, and for that we'd put up with just about anything.  It is worth it.  We'll write back with another progress report next year, until then, good luck to you all on the GF/CF diet.

Paul and Judi Newman\

 

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Name: Dyson
Age: 3 years (on diet close to 1 year)
By: Randee mother

We really never did think anything was wrong with Dyson.  For a while... we just thought he had a harder time managing his temper and was just a difficult child.  With the birth of my 3rd child I started wondering,  about possible vaccine side effects.  Before I vaccinated my baby I decided to read up on it and learn for myself.  I began with reading two books, "Vaccines:  Are They Really Safe and Effective?" and another written by a mother, "I Don't Want To Be Like Tye",  a book about vaccine injury. While reading the vaccine injury book I began to cry and said aloud,  "I hurt my Dyson". Well,  I decided NOT to vaccinate from then on, and kind of  forgot about my experience. 

When Dyson started biting himself and inflicting pain as well as some other odd behaviors...  I started to do some research on the internet and found the GFCF Kids website which led me to a few other links.  I read about the Urine Peptide Test,  I KNEW I had to have that test done... so after a big deal with my pediatrician we finally got the test done and his levels where HIGH.  We are Vegans, so we were already dairy free. His high peptides were from gluten alone. (His levels would have skyrocketed if we were consuming the Casein as well). 

Our pediatrician warned us NOT to change his diet, but I removed gluten and saw immediate changes!   He had cradle cap from birth and it disappeared within weeks.  He finally began to speak some words.  He was 2 years old when we started and he didn't say a single word at that time.  He began to manage his temper, stopped biting himself,  started to participate more with reading books and playing with someone else.  He CHANGED and is still changing for the better. 

After doing more research I found some info on the mercury in vaccines, damage to the gut and brain-blood barrier.  All of this new information rang all sorts of bells and butterfly's with me and I felt the same as when I read the first book about vaccines.

We are are just now beginning to do some experimenting with cleansing the heavy metals out of his system and rebuilding his gut & brain-barrier with herbs and natural foods.  Its been very fascinating and a BIG growing experience!

This experience was so meant to be... I was guided by my Heavenly Father to find this info and it has changed all of our lives.  I'm so thankful for the knowledge. 

~Randee
 

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Name: Taylor Owen
Age: 3 1/2 yrs old (on gfcf diet for 1 year)
By: Kris Owen mother


Taylor was diagnosed with Autism on Dec. 20, 00.  Of course that was a very devastating day, but it also seemed to open many doors that I did not know existed. Immediately, I started reading and researching  to educate myself.  I have learned a lot in that time, but I am most grateful for this website and for learning about the gluten/casein free diet.

I began Taylor on the diet on Dec. 28, 00.  Just 8 days after learning she was diagnosed with Autism.  I learned about it on the Internet, and thought it seemed like something fairly simple that I could do at home, and it was safe.  I took my list of Do's and Don'ts and went to the local health food store searching for foods I thought she might like.  I was lucky because she switched from milk to soy without even batting an eye.  She did the same with many other foods. Once she was switched she actually began eating a variety of new foods, which was very exciting. 

When we started her on the diet we saw significant changes almost immediately, mostly in her sleep habits.  Prior to the diet she had rarely slept through the night, she would awake crying and fussy, for 2-3 hours, and always seemed to fight her sleep, having difficulties winding  down.  She was distant and seemed to be in her own world, not interested in her surroundings at all. After a year on the diet she has regular sleep patterns, even taking naps on a regular basis, which she had never done.  She also recognizes the family getting excited to see us, showing interest in her surroundings and is much more alert.

But, after having her on the diet for a year, we felt it was time to challenge it and make sure the efforts are worth it.  Believe me IT IS!!!  I decided to give her just 8 cheerios with dinner one night and we quickly suspected we shouldn't have.  She immediately fell into her old sleep pattern, she fought going to sleep as if she was hyped up, and then would sleep for only an hour and wake crying and fussy for hours.  We took her to the doctor just sure something terrible must be wrong, but everything (urine, ears, throat, temperature) appeared fine.  He explained how the stomach processes certain foods such as wheat and dairy, and if you happen to be allergic or unable to process these foods it can cause severe cramping and pains in the abdomen.  Which I believe is why she would awaken crying and fussy at night and unable to sleep.  It took 2 weeks before she began sleeping through the night again.

Thank you for such an informative and helpful website.  For others out there not sure if they want to give it try, just have an open mind, you never know until you try it.  I can't even imagine how Taylor would be without it!

Sincerely,
Kris Owen   

 

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Name: Sandy 
Age:  48 months
By Reb 

At 2 and 1/2 years our son did not speak. He had 3 or four sounds. He had learned to walk early, and yet it was like walking around with a knife in my stomach. Until one day I gave him milk and a bagel and witnessed within fifteen minutes smelly frothy stools running into his diaper. The penny dropped. He was milk intolerant and so we provided lactose reduced milk. At age 3, we removed gluten. He improved even more,. Sandy learned to speak. but his difficult moods persisted. A well-meaning gastrolenterologist said his milk intolerance would pass and that we should continue to provide milk. A second gastroenterologist was not all concerned about his gluten allergy and milk intolerance. My son laughed frequently and "self stimulated" everywhere-- in church,  in front of his grandmother and at any time.

At age 3 and 9 months Sandy began Jr. Kindergarten, but he was difficult to handle and did not join in with other children; he cried frequently, and was upset when another little boy, Brenton, called him "bad". I moved Sandy to another Montessori Preschool, where the teacher commented upon Sandy's reaction to a  buttered gluten-free snack. Sandy would not enter strange rooms and had upwards of three tantrums a day. I thought he was testing parental authority.

Finally Sandy said he did not want to go to school anymore, and asked me to go with him, where I witnessed him running around the classroom, unable to focus or concentrate. He was unable to unscrew nuts from bolts and his hands shook. He could not follow directions or stop running. At the teacher's recommendation, I unrolled him from the school.

I began to search the internet and found  the gfcfdiet and this web site. I began to see my son was or would be autistic, so I removed casein. And he improved every day with a new milestone. He stopped crying, and hiding under tables. He stopped his "self stimulation". He began to welcome limited new challenges.

He was there 75-80 % normal, but he was still hyperactive, and couldn't follow instructions well.  I recorded his diet, every thing he ate and his reaction. My husband and I noted spaciness and hyperactivity following rice some of the times, and to specific foods, like apples and peanuts. We began to consider digestive enzymes and the organ that produces them- the pancreas, which also produces insulin. It seemed to make sense that if we had been asking this organ to produce a huge number of enzymes for essentially indigestible food, the pancreas too might be out of whack. Three days ago we began to space our son's carbohydrates, fats and proteins, placing him on essentially a diabetic food plan which does not allow  unlimited access to fruit, nuts or beans. Using a diabetic food plan we have seen our son become reflective and calm. He is thinking. He is there. He has reached or is reaching the 100 percent mark.

God Bless,
Reb

 

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Name:
Brandon 
Age: 4.0 years
Mother: Betty

To any of the parents who are skeptical about this diet:
It's worth your time and effort to try this diet  for your child.  I might even say that not trying this for your child may possibly prolong your search for some progress in your child's development  

I was a skeptical parent. No doctors that I went to supported the diet, not even the doctor who diagnosed my son's PDD/NOS, supports the diet.  From the time I seriously even considered trying the GFCF Diet, it took me a month before I made a commitment to my little guy.

Within a week, I started noticing the positive changes.
Within a week, I was getting positive notes home from school.
Within a week my little guy was on his way.
 
The diet is hard. It is a commitment and it is harder than any "diet" I ever tried for myself. No one will do this for your child.  People will ask, "Well, what does it do?" My answer is, "You as the parent know what goes on with your child.  The little things that seem odd, or don't seem right.  The things you wished were different........Those are the things that change.

God Bless the person who discovered this diet.  God Bless the parents who persist with the diet. God Bless the skeptical parents and give them the strength to try something that will help their little ones. 

 

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Name:  Kieran
Age:  4 yrs.
Mother:   Jill
On diet:   10 days-- yes, days!

I just wanted to write and thank you for providing such a valuable resource on the gfcf diet and tell you about what it's done for my son in a remarkably short time.  

Kieran was diagnosed with autism just a week after he turned 4.  He'd had a noticeable speech delay and was a picky eater, but the Pediatricians I took him to (we've moved several times) just told us to "wait and see."  We finally started the process to get his speech evaluated when he was 3.5.  The speech therapist suggested additional assessment.  

After several delays for bad colds, cavities, and Acts of War, we finally had the assessment done.  Kieran is one of the lucky ones.  He's high-functioning, although he displays limitations in each other the 3 diagnostic areas:  speech development, socialization, stereotypical behavior.  He is currently enrolled in regular preschool 3 mornings a week and a special language-intensive program 2 mornings a week, plus an hour of private 1-on-1 speech therapy.

I'd heard about the gfcf diet and it floated by me several times in the next few days.  I have a lot of food allergies myself and thought it might be worth trying.  My husband was deeply skeptical.  While he was out of town on business, I started cutting out Kieran's milk.  The second day Kieran was "casein-lite"  (I was trying to wean him off real milk over a couple of weeks) his language teacher told me he'd had a breakthrough--he spent 15 minutes playing with one of the other boys in his class.  She'd been trying to engage Kieran in play with the others for 3 months, but he would refuse.  That night I started reading Karyn Serrousi's book "Unraveling the Mysteries of Austism and PDD."  

Two days later I took Kieran off milk entirely.  That day he spontaneously began imaginative play.  And he hasn't stopped--he latched onto a bunny toy, gave it a name(!) and pretends his baby bunny has a boo-boo and needs to go to the doctor; he tells me his Blue doll is hungry and he feeds the doll cereal; and he animates toys and makes them talk!  My husband came home at the end of the week, and although encouraged by the dramatic changes, still wasn't convinced it was the milk.  He took Kieran out to lunch and they had milkshakes. That night while we were trying to eat dinner (out for Chinese food) Kieran couldn't sit in his seat and spent most of the time running in circles, definitely stimming.

I was convinced with the zeal of the newly converted that the milk was playing a much bigger role in his symptoms than we'd expected.  My husband was still skeptical, but agreed to a 2-month milk-free trial.  I also started to lessen the amount of wheat in Kieran's diet with the goal of being gluten-free within a couple of weeks.

All I can say is we are blown away by what we've seen.  My husband, who started out against removing milk and requiring copies of medical research to substantiate these claims, is now 100% behind the gfcf program.  Kieran actively seeks us out to play with him, he's talking all the time, he doesn't want to watch TV as much, and he started putting together small jigsaw puzzles.  We've seen an explosion in his reading and writing, his imaginative play continues to amaze us, and Kieran's less rigid.  He tried 4 new foods this week--that's more than the past year.  Until this week he needed every button done up on his favorite jacket or he wouldn't move out the door.  Now, the last 2 out of 3 times, he can go out without ANY of the buttons fastened.  

To some parents these would be little things, but to us they're enormous, and they add up to a real, measurable improvement in our boy.  And it's not 5-6% better, it's 100%.    He had almost no imaginative play before, now, that's just how he plays.  He never played with the other boys in his class, now he can't wait to get to school to see them.  Kieran still has a lot of issues that need to be addressed and a long way to go.  We're actively pursuing the appropriate therapy and support, but I feel the gfcf diet has made him more receptive to therapy and has improved his overall level of functioning.  The road ahead is suddenly smoother.

When I started this diet program for Kieran I was afraid to have hope.  I steeled myself for the possibility that nothing might come of it and decided to be grateful for ANY glimmer of improvement.  I decided it was worth it to fight for every 1% of improvement.  After 10 days--not months, DAYS--we've seen more improvement that we've seen in months.  

My next step is to find him a new doctor (one who won't blow off my concerns and woo-woo alternative leanings) who would be willing to test Kieran for fungal infections/candida overgrowth.

If you're a parent and still in doubt, just try it.  It's something you can do today. You have nothing to lose and quite possibly the world to gain.  Good luck and God bless.

 

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Name: Matthew
Age: 6 years 6 months
From: Peggy (mother)
How long on the diet: 1 year 6 months


My son, Matthew, now age 6 1/2, was diagnosed with PDD-NOS at age 3.  I wish I had believed the information on the internet when I first read about dietary intervention for Autism.  He could have made so much more progress by now.  We began the gluten-free/casein-free diet a year ago last May. Initially there were fewer screaming episodes---that was the biggest change.  Over time, he began to understand what we were saying to him.  And his speech slowly "blossomed".  We didn’t notice the changes everyday so much.  It was the people who saw him every few months that really noticed.  This spring, after a Urinary Peptide Test revealed that Matt was still being affected by peptides, I took him off soy.  He has shown further improvement.

Matthew still craves routine, and mainstream public school has been a positive experience for him.  He attends first grade, where he still needs a 1:1 aide, but in his class the aide is more of a teacher’s helper.  I wish to help foster his independence, and his aide is there if she is needed.

Diet infringements are extremely noticeable, but, luckily have been rare.  Sometimes I cannot figure out the source.  During these times Matthew will become more "Autistic".  He moves his hands and toys around his eyes, looking at them out of the corners of his eyes.  Eye contact and behavior worsens.  Deviations in routines result in tantrums.  He chooses to be alone, rather than associate with other children.  His obsessive compulsiveness increases, and his eating becomes even more picky.

We have been seeing a DAN Dr to help with Matthew’s Autism.  I felt overwhelmed and I needed guidance with supplements.  I needed to know that everything humanly possible was being done to help Matthew.  She has authorized testing be done, to see where metabolically Matthew can be helped.  Matthew routinely complained of stomach aches before visiting our DAN Dr, and those stopped within two weeks of our first visit.

Matthew takes a plethora of supplements daily---more than the usual because of his picky eating habits.  We have cut down on sugar greatly, and have tried to maintain a 1:1 ratio of protein to carbohydrate. Matthew has shown a Krebs Cycle irregularity, and we are working to rectify this problem.

Matthew is taking Chemet on a schedule, to help remove Lead.  Matthew tested to the limit on Lead, so we are working to bring that down.

Our visits to a very famous Children’s Hospital have ruled out any physical reason for Matthew’s Autism.  And they have been helpful in that they have proven that Matthew needs assistance in the public school system, but they routinely downplay the effectiveness of the diet.

I belong to a group of moms of Autistic children in the our state who are using similar methods to cure their children.  We meet and discuss therapies, strategies, recipes, and vent.

I look at the three years he just got progressively worse (from age 2 to 5), when he could have developed more normally.  Matthew had "early intervention", and he enjoyed that immensely.  But nothing has made as marked an improvement in him, as removal of gluten, casein and soy.  We are now working to catch up, and try not to look back.

"Thank you" Karyn Seroussi for your article in Parent’s Magazine, Spring 2000.  You are an angel from heaven.
---Peg Tipton

Update emailed from Peg Tipton. . .

Name:  Matthew
Age:  12 years 2 months
From:  Peggy (mother)
How long on the diet:  7 years

 

Matthew is now 12 years and two months old.  He is still on “the diet” for his autism.  He has made huge gains over the years.  He will be entering 6th grade this fall at the public middle school. 

 

We had Matthew repeat grade one so he could catch up academically.  Over the years we have weaned him from a 1:1 aide.  He now only receives help in class for writing and math.  He is on grade level for math, which is wonderful.  He is still two years behind for reading level, but we are always working on that piece.  Socially, we have seen the most progress.  He has gone from being the outcast, to having true friendships, experiencing birthday parties and sleepovers---and that has been a dream come true.

 

Over the years I have had to remove many more things from Matthew’s diet.  After removing gluten, casein, and soy, I realized that he reacted to eggs, yeast, nuts, corn, beans (even green beans), strawberries, raspberries, chocolate, xanthan gum, and yeast.  I have never eliminated sugar from his diet, but it is limited.  Matthew is at his best when on a “white diet”---eating foods (fruits & vegetables) that have less color.  He now eats a lot of cauliflower and cucumber for his veggies.  But this is hard to maintain over the long run.  Staying “low oxalate” as much as possible has been very helpful.  He still takes supplements and cod liver oil.

 

After all this time, Matt is still a picky eater when it comes to new items.  I still have to keep introducing the new items, on a separate plate and insist that it be tried.  Thankfully, he has always been compliant, but not without complaining first.

 

On special occasions, and when we travel, we do allow him to have corn, chocolate, and yeast.  But we have never challenged the basic gluten, casein or soy back into his diet.  I see what happens after these special occasions when he gets corn, chocolate, increased sugar, and that’s more than I need to see to keep me convinced of the need of this special diet. Yes, it has been an effort to maintain, but it is worth every bit of effort many times over.
 
Peg Tipton

 

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Child:    Mathew
From:    Teri  (mother)
Age:      5 yrs  11 months
How long on diet?  1 year and looking forward to many more


(Matthew's over all ATEC scores: he was at an over all of 78 when we started the diet and as of today his over all is 9!) 
Editor's note: Please take the time to enter your child's personal data on our GFCF Diet Survey
http://www.advimoss.no/gfcf_survey/ All information is kept confidential.

This past year (October 2000 to October 2001) has gone by so fast its hard to believe that our one year anniversary on Gluten free, Casein free, Dye free diet has come and gone already! Last month marked our one-year point when I first started gathering the information on our family's newest challenge. I spent two months solid studying, reading, looking up, and a lot of praying that I could some how pull this off for Matthew. Everyone that knows me knows how much I hate cooking. Every time I try I manage to mess the instructions up! "So why should this new GFCFDiet be any different I thought?" I was scared out of my wits that I would have nothing for Matthew to eat, but there was one driving force that kept me going. It was the soul instinct that I knew this would work, it had to work, and I just couldn't stay locked up with all Matthew's head banging, screaming, and crying, forever!

After getting the approval from a special doctor that I felt comfortable with she handed me a paper with
www.gfcfdiet.com and a list of vitamins that I could start. I first went to the local health food store. They were very helpful but I would later find out that the Internet has the best places to shop for great products. We have a Wild Oats where we live that also has most everything. When I can't make it to Wild Oats, Kroger's does have lots to choose from since they expanded and added more health food aisle in the past few months.

Matthew's communication skills have soared in the past 6 months. I feel ( This is just my personal feeling, I know there is much more that helped along the way) a lot of it has to do with adding the Cod Liver Oil to his list of vitamins. He clearly understands when you tell him what is going to be done. When Matthew starts complaining and screaming I can tell him firmly what needs to be done and discipline him according. He still doesn't come home and tell me whole stories about his day or what the teachers have told him to do but he has gotten better about answering questions like what or where did you go today i.e.; gym, music, library or other activities.

Matthew can make complete sentences and some times they are so cute because he really tries to get the words all in there. He has some years to catch up with but I believe he will fully catch up. With the GFCFDiet, vitamins, speech therapy, and a great classroom of Teacher's he has a chance that most kids with autism don't. I believe every child with autism is different but if this diet only helped a little its worth every effort. I am so blessed to be able to provide all this for him. My hope is that more people will see the small miracles as I have and find the right pieces of the puzzle that fits there child for recovery. I know Matthew is not cured of Autism that will always be with him. I can say he is recovering, because we are treating the Autism not fixing it. If we take away any of the pieces or parts then his Autism characteristics come back to remind us that they are still there!

As of today Matthew is reading words at the same pace his kindergarten classmates are. He is able to follow directions for the task at hand. There was talk that because he is fully included in his kindergarten class with little to no help with his aide that he may not need the aide any more and he could be released fully main stream. As with all kids we have ups and downs. When Matthew has a down, he really has them bad, usually that means there has been an infraction in the diet or something is amiss. Last week was a reminder of why he has the aide. We have not figured out why but Matthew was just out of sync all week at school and at home. One of the days last week his aide had to take him back to the transition class but before they got there Matthew had a meltdown so bad that he banged his head hard and left a mark on his hard head. I knew why he was mad that day but he can usually readjust for these changes. I later realized I had changed his Jelly and backed off his vitamins. After adding the vitamins back and going back to his regular jelly we had a great weekend and so far a happy week at school. 

Its little things like that, that can really puzzle you why and then you have to find the pieces for that puzzle and fit them back into place. It can be so frustrating at times but no one ever said this was going to be easy, did they?

Hope you enjoyed the story about Matthew. I am sure it leaves you with lots of questions. I would be happy to answer them at any time just send me an email:
terri@timhinds.com
This is a follow up story.  


Terri



Child: Brennan  
Age 3 years 7 months old  
Diet since 11/00
By Lori Vilcheck


I have to say that probably like many of you parents I knew something was wrong when my son turned two and he still was not talking. When I would ask the pediatrician he would say,  "Well, he was 5 weeks premature and it takes them a little longer to do certain things". Well I'm sorry,  I knew that something was not right.  So I found another doctor who lead us in the right direction. 

On the day my son turned three he was diagnosed with PDD.  I ran to the library to research it as much as I could.  Just like many others, I  read Karyn Seroussi's book.  Thanks to Karyn's book,  I questioned my son's doctor.  With her approval we started the GFCF diet.  What  a difference the diet made!

My son Brennan  has been on this diet since November of 2000. It has been a complete turn around.  He now will interact with other kids,  is beginning to label things,  repeat new words, make eye contact and listen to me when I ask him to follow directions.  This diet is unbelievable.  It is much easier to keep up with than I ever imagined.  And to my surprise if you go to your supermarkets' store manager, sometimes they will special order these items. (It may help an enormous amount at some stores if you have a group of parents with same dietary needs.)

I have complete faith that this diet can help even the slightest case of any form of autism, even if it just helps your child in one area, It can be a god sent.

Good luck to all who try it and for all who have done the change.

 


Name Franky  
5 years 3 months old
GF/CF for almost a year
By Joan


I can't believe its been almost a year GF/CF!  About a year ago, Franky was an emotional age from 1 year 10 months-2 years 11 months.  He had no imaginative play.  He was diagnosed with ASD, severe ADHD, severe Sensory Integration Dysfunction, Speech and Language Disorder.  I had never had a conversation with him.  After about a month on the diet, words just started to pour out of him.  

Now, he plays appropriately, is well liked by other children, shows empathy, played a team sport, writes his name, is joyful and confident.  He is significantly less hyper. Anytime he gets contaminated, he's hyper, loud, hurts himself, etc for at  least 3 days.

OK, so he still has challenges, he still has ASD, but I feel so blessed with the results of the diet.  We're looking for additive therapies but less urgently as this simply works.   He's a great child and beloved, now he can tell us he loves us, too.  I pray that other mothers have the same success we have had.

 

Blake and Craig 
7 year old twins
By Kelly Johnson

My boys have been on a GF\CF diet for 18months.  They both have Aspergers Syndrome PDD. Both the boys had a difficult time adjusting to the diet.  Many of the foods have a challenging texture which they found had to swallow but after much trial and error we have finally made GF|CF a way of life.

The boys have always suffered with constant explosive bowel motions and stomach pain.  Sleeping was never an easy thing for them to do and concentrating on any given task, forget it.   Craig had tendency to be very self critical and injure himself when he couldn't meet his own expectations.  His hair was frequently falling out due to stress and both the boys were very skinny and sickly. They are now contributing more to our family and have next to no reflux or stomach pain.  Their teacher is delighted with their improved concentration spans and their anxiety levels have diminished, particularly Craig's.

Life is finally good and a lot more rewarding if not a lot of work in the kitchen.  Worth it though I must say. Good luck everyone.

 

Zachary 
age 3.11 years
by Angela Gebin

My son's name is Zachary and he has been on the GF/CF Diet for about 1 1/2 years.  He will be 4 years old in August.  When Zach first went on the diet he was receiving services thru Easter Seals and I had mentioned the diet to only one therapist there.  At an earlier point I had mentioned the diet to another therapist there and she was very skeptical about the diet.  So I decided not to tell her when I had started the diet.  However, about 2 weeks after starting Zach on the diet, while we were at one of his weekly sessions with her, she was very amazed at his progress.  He seemed to be paying attention to her and it seemed like he was starting to understand what she wanted from him.  She looked at me and said "whatever it is that your feeding him, keep it up".  After getting the same reaction from other therapists there, I finally mentioned that he had been on the diet for a few weeks.  They were very pleased by the results.  Since then he has started pre-school in a public education preschool and we have seen some major improvements in him, with the help of his teacher, the educational assistants and also his therapeutic aide.  In January of this year they also started some Discrete Trail Testing with zach and have seen some significant progress.  I don't think that any of these accomplishments would have been possible without the help of the diet.  It seemed to have cleared his mind somewhat and he seems interested in other people. Whenever Zach has been contaminated his teachers have noticed that he will not cooperate, he is very fussy, and can also get very aggressive, biting and pushing other children. His teachers were very worried the first time they saw him contaminated because he was so different then he normally is.  They thought he was sick or in some type of pain.  After that incident his teachers have also become more aware of the diet and are also pleased by the results.  Although Zach has made some significant gains largely due to the diet, we still have some ways to go, but I'm glad that I heard of this diet! It has made a huge impact on our lives!! Thank You very much.
Angela Gebin

 

kmstevens, mom
J, son, age 2 1/2 years
months on diet: 2 months


(Note: Not all children who benefit from the GFCF Diet have a diagnosis of loose stools.  Many children do not show these symptoms at all and still greatly improve after implementing the GFCF Diet.)

Today is one of the happiest days of my life. Today ,my son pointed to an airplane in the sky, fully
pointing with his index finger, not just his arm. My
son is almost 30 months old, and he's finally pointing.
I have much to be grateful for. I have been waiting for what seems like an eternity to make a contribution to this website. I've lost count of the number of times I read the success stories, fighting my grief and tears, seeking inspiration and hope for my son that he might one day recover from autism. I have spent hours on my knees, storming Heaven with prayers, asking the Lord and his Blessed Mother to return my son to his family. In the words of Catherine Maurice, I prayed that my son would "come home." With every passing day, he takes a few more steps on this journey.

J was a very pleasant baby. My sister saw him at three months of age during the Christmas holidays and consistently remarked at his wonderful disposition. She later found it hard to believe the things I would tell her about how he had changed. J has yet to be officially diagnosed with autism. I had my suspicions about his lack of normal development from the time he was 15 months old. He had eye contact with me at 6 weeks of age, cooed and laughed, sat independently at 8 months, walked all day long on his 1st birthday and babbled like a normal baby.

Somewhere between 12-15 months he changed from a charming, although active boy into a hyper-active, implacable toddler who had no functional vocabulary, and resorted to taking me by the hand when he needed something. (Studies that track "developmental regression" after MMR and DPT vaccines are numerous. J had his MMR plus 5 other vaccines on the same day at 12 months). I put those concerns aside because I have 2 normally developed daughters, and I didn't know anything about raising a son. Around 18-22 months, while watching one of the only 10 videos he would watch, I noticed there was no purpose to his play and that he had no idea what to do with his toys. He also refused to respond to his name. This was all very puzzling to me. 

Thinking he simply needed to be around other kids, we attempted to put him in preschool two mornings a week. He was one month shy of 2. This was a complete disaster. He cried inconsolably for two hours, threw tantrums when he had to come in from the playground and spent the last 45 minutes in a corner, hugging his blanket, sucking his pacifier and sniffling. After 5 weeks of torture, we removed him. I later learned I was lucky he even noticed my presence or absence. His behavior became more wild and erratic, so much so, that we cancelled more than one family vacation. The more we tried to physically constrain him, the worse he became. We couldn't walk with him anywhere because he never walked. He simply sprinted as fast as he could in any direction to get away, not stopping until he fell or we caught him. 

Then the tantrums would begin. Eventually, either I or my husband would take him out of the restaurant or out of church, or out of hearing range as a mercy to those we were disturbing. We haven't been out to lunch or dinner as a family since November 2003. At his 18 month check up, I told the physician that he never pointed, he wasn't using 1-2 word sentences, wasn't following one-step commands. These should all have been red flags, but since I'm a physical therapist and didn't seem worried, I suppose the doctor wasn't either. 

As far back as I can remember, J had never had a normal bowel movement. He suffered chronic diarrhea with repeated diaper rashes. His stools were also the most foul smelling dung heaps known to man. They were and remain a bizarre yellow color. He began having sleep disturbances. Some nights were "night terrors". Although these outbursts were short-lived, I could not comfort him. Other times, he just lay wide awake from 2-4 in the morning, laughing and babbling to himself. When we put him to bed, he'd reach his foot through the crib and kick the wall so hard that he'd scoot his crib out 18" away. Eventually, he'd be so far out into the room, his leg couldn't reach the wall to kick it anymore. 

He loved spaghetti, cheesy bread, applesauce, oatmeal and his milk. He loved his dairy (casein) and bagels (gluten). I couldn't understand why a child 2 years of age refused to self-feed. Later I realized he had an aversion to certain textures and easily gags. We've had him on a pureed diet so he would eat something, but this requires that we spoon-feed him. We still spoon feed him, 3x/day every day. His eye-contact was almost non-existent, but he would often look at us sideways, using peripheral vision. He loved to fixate ( I later learned this was called eye-stimming) on shiny objects, or the TV or any toy that would light up and play music. 

I've taken toys away from him because he would sit and press the same button, playing the same tune with his nose pressed up against his toy for 20 minutes if allowed. He hated to be held and would turn his back to whoever tried to hug him. Here was my two year old boy, who had never called me mommy and refused to be held. In fact, forcing him to sit on my lap instigated his worst tantrums. My son had no functional vocabulary and understood almost nothing that was said to him. As recently as January 2nd, he had a tantrum lasting 40 minutes. I was helpless to console him, so I cried along with him. I knew in my heart of hearts my son was not normal. 

Oddly enough, one of my patients, a speech therapist, pushed me to get a speech evaluation for Jack. Her words "does he ever call you Mommy?" tormented me. The results of his speech eval were severe delays in receptive and expressive communication. Her plan was to refer him to the county Developmental Evaluation Center at the university in town. J was apparently in need of much more than she could give him. The only problem is, they have so many kids on the list, we were told it could be 3-6 months before they could see him. This was unacceptable. I would not give up so many of my son's precious days. Each day that passed without intervention was a day he would never get back. 

After crying for the next three days myself, I found Karyn Serroussi's book "Unraveling the Mysteries of Autism and PDD". I convinced my husband to try the gfcf diet, because we had no where else to go and nothing to lose. We also started him on SuperNu Thera liquid, calcium powder, epsom salt baths to help with phenol-sulphur transferase insufficiency, cod liver oil for retinal health and to reduce eye stimming habits. All of these supplements are over the counter, by the way. I arranged, with a Developmental Psychologist who attended our church, to set up an in-home ABA therapy for my son. (ABA = Applied Behavioral Analysis, created by Ivar Lovaas). I'm one of J's therapists now. 

(Read "Let Me Hear Your Voice" by Catherine Maurice who recovered two of her three children from autism using ABA). I love the interaction and watching him learn "how to learn." The in-home therapy will take about 20-30 hours/week. We hired a speech therapist privately to work with him 3x/wk. The final piece of the puzzle needed to help him recover was a DAN! physician. This stands for Defeat Autism Now! and is made up of parents like you and me, physicians who themselves have autistic children and other health professionals who are intent on halting the epidemic of autism spectrum disorders in this county. This week we took J to a DAN! developmental pediatrician. We drove three hours to her office, after waiting 6 weeks to get an appointment. I didn't bother to seek help from the physicians in my area. I had heard too many stories from mothers with autistic children who had met with nothing but resistance to biomedical and dietary intervention. 


(Editor's Note: Other food intolerances MAY also emerge after the gluten and casein free diet has been established.  Keep a watchful eye, taking one step at a time.  Do not become overwhelmed when you begin the GFCF Diet by thinking about further food restrictions which may not even be a problem for your child. Start dietary intervention slowly, first mastering GFCF.  There have been reports from parents that other food intolerances do emerge,  but this is not always the case. Consult with www.feingold.org if you should become aware of other food intolerances. Always make sure your child is maintaining a healthy diet providing foods of equal nutritional value for those foods which you restrict from his/her diet.)  



Continue reading the following letter:)

I also need to point out that other bothersome foods became known to us once we removed casein and gluten. Foods high in phenols, basically all brightly colored fruits or vegetables, especially apples & applesauce have phenols. His diet consisted of sweet potatoes regular potatoes, rice, chicken, ham (try as I might I couldn't find a ham made without nitrates), pork tenderloin, French fries (homemade), cream of rice w/pureed macadamia nuts and brown sugar, almond cookies, pureed pears and water. We buy organic chicken broth or save the chicken broth after cooking to add to his meals so they aren't so dry. I must add it is critical to read labels. Although Ore Ida products are listed as acceptable, I think J reacted to the phosphates used as a preservative in the Snackin' Fries. His behavior and stools changed within three days of adding them.

 I relied heavily on this website, www.gfcfdiet.com , for information.  A great Internet GFCF and beyond food store is  www.missroben.com, and also the gluten free pantry (also online) for recipes. We added canola oil to his lunch and dinner to add fat, and also got fat into his diet with nuts and the marzipan -like almond cookies for snacks. I mention his supplements, especially calcium powder and cod liver oil. Carlson's is good fish oil because it is checked into parts per billion for mercury. Our new pediatrician added probiotics to repopulate the good flora in the gut, often destroyed by antibiotics. L-glutamine also to heal the gut, L-carnosine to improve frontal lobe brain functions, reduced L-glutathione cream and No Fenols. 

We gave J spaghetti with meat sauce, full of garlic and onions plus rice pasta for the first time in 2 months. He must have thought he was a very good boy that day because he was thrilled to eat it. We've also added an egg to breakfast. Using No-Fenols is allowing us to broaden his diet and so far we have not noticed any behavioral changes 

Thus far the state system has done nothing for us. I may go broke financing his recovery, but it's a debt I gladly accept. These children can be healed, and the earlier you intervene, the better your child's chance for full recovery. As heartbreaking as it is to realize you have a disabled child, it is empowering to know that YOU ARE IN CHARGE OF HIS CARE AND YOU ARE HIS BEST ADVOCATE!!!!! My mantra is and will remain "IF YOU ARE NOT HELPING ME, YOU'RE WASTING MY TIME." 

I now have a different child. Or should I say, I'm learning daily the sweet nature of my only son as I watch him break free from the isolation and fear of autism. His recovery so far has involved no prescription medications. After three days on the diet he had his first solid bowel movement. Since then, they've been soft, but nothing like the soup he used to produce.

 He's started watching other kids and how they play at the playground instead of roaming around the perimeter, lost in his own, isolated, little world. He responds to his name 90% of the time now. He has learned how to build with blocks, put together Mr. Potato Head with help, he can match up shapes so they fit through the properly shaped holes, he laughs with us when we tickle him and seeks us out to play tickle games and ring-around-the-rosy. He even instigates tickle games! 

He can follow and understand one-step commands like, "let's go get a clean diaper, sit down, let's go outside/inside, time to read books/go to sleep, let's go take a bath, let's get the mail..." etc. The most startling changes are his eye contact and his talking. His eye contact is non-stop. I actually think he's seeing for the first time in his life. He still stims on certain objects, but it's nothing like it used to be. And then there's the talking. He says "bye-bye, cookie, he counts to three, says uh-oh, Maisy (his favorite book), I see you, he makes animal sounds, says thank-you, come on, says the ah-hoo-wah-he-ah-ho-ho-ho chant from the movie Nemo, and the list goes on. 

The best part is how he let's me hold him. He will even crawl up into my lap when I put out my arms and say, "come here, Jackie." I read him stories every night while he sits on my lap, and afterwards I sing hymns/songs, rocking him before bedtime. He's completely relaxed, and even smiles when I sing "Inchworm", one of his favorites. While I hold his little hand in mine, I tremble with gratitude that he's achieved so much so soon, and believe it's possible to die from loving someone too much. He has said, "mama" a couple of times, but nothing consistently. When he calls me from across the room and looks at me, I'll know it's the real thing. That day I just may die of love. 

This is your child. You have nothing to lose but precious days he will never get back. He has everything to gain by trying dietary intervention with supplementation. Take away his drugs of choice, like pizza and chicken fingers. Buy Lisa Lewis' book, "Special Diets for Special Kids" and make gluten-free chicken fingers instead. Find a DAN! doctor or a physician to help you using the DAN! protocol. Get your child into therapy to make up for lost time. Your child won't ask you for help. That's your job, so do it.

I'd love to hear from you. Just label the subject in your e-mail, because I get a lot of junk.
Karen Stevens
[kmstevens63@yahoo.com]

 

Mathew's Story 
(age 2 years old)
by Samantha Glaysher

Our son Mathew was diagnosed autistic PDD last July.  He has made a complete recovery through the GFCF Diet alone. All testing was done through Paul Shattock at Sunderland University. (He is truly an inspiration.)  I only wish, for the sake of parents new to all this, that information  was more readily available when visiting physicians, etc.
How many children go undiagnosed and not helped -  without any dietary intervention........?
 
Kindest regards,
Samantha Glaysher
 



Nicholas' Story
(age 2 years old)

by Cindi K. Johnson, MD, FACS

Our son, Nicholas is now 2 years old. By 12 months, we knew something was wrong. He would not respond to verbal stimuli, had no speech at all, and when a balloon popped in his face on two separate occasions, he did not notice at all. We thought perhaps he was deaf, but he would run in from another room when he heard his favorite video music come on. 

As my husband and I are both physicians, we suspected a problem and autism crept into our thoughts though we wanted to ignore it. By 18 months, when we looked at videos of our other son singing the ABC song and following complex commands, and doing all the animal noises, we knew we could not attribute the difference to sibling differences as we had been recommended to do. We took him back to his pediatrician who at that time confirmed our fears. I got on the internet that night looking for immediate information and ran across a mention of a special diet. Our doctor's nurse coincidentally mentioned a family in our area trying this special diet. Within three days I decided to start Nicholas on the gfcf diet. I could see no down side: he could get enough calories, nutrients and fat through the diet, it was free, and there were no unusual things to add or eat. My husband went on a trip for days starting the day of the new diet. On his return, he noticed that Nicholas was brighter and seemed more "with it."

Within weeks, he made 11 new sounds of speech, ie. b, d, k, g, h ,m ,n, p, r, t, y! !   It was like watching a fog lift off someone as he became more and more aware of his environment and interacting within it. It was as though he was slowly awakening. He is now just over 2. His eye contact has improved tremendously, he now has around 22 words and his expressive language is improving. His receptive language is still lagging severely. His dangerous climbing habits have significantly decreased. He is very happy and smiles easily which we feel very thankful for. He does not have a lot of sensory issues. We know of 4 other families in our area who have children on this diet and have noticed positive results.

As a physician, I know that this is the only change we made to his diet/environment at that time and we witnessed a marvelous change. As a parent, I am thankful to have this diet as a basis on which the therapy he is receiving can build new skills. With this many positive anecdotal reports of improvement, there has got to be a true scientific basis for this improvement. I am hopeful that, with time, the medical community can come to see this diet in much the same way that we now recognize that diabetic individuals must alter their eating behaviors to maintain their optimal health.

Best of luck to each of you, 
Cindi K. Johnson, MD, FACS

PS Please see the Parents magazine Feb. 2000 issue for a great article on this diet.




Perry's Story
(age 12 years old)
by Robin

My name is Robin, I have a 12 year old son named Perry who is autistic. I start a Ph.D. program in nutrition next month and I was very surprised to find that through all my studies they never mentioned anything about possible food allergies being linked to autism and other learning disabilities. So, when I came across the GFCF website this summer I was really excited and wanted to try it.

This fall I decided to homeschool my son, who was about to enter middle school- a place I was very reluctant to send him. With him being home I knew that I would be able to monitor what he ate, etc.

Here's what happened:

The first few days of the diet, I took him off dairy (mainly milk), I was able to see changes in him almost immediately. He stopped running and skipping around and laughing at imaginary things. Over the next few weeks, I experimented with the milk and came to the conclusion he could no longer have dairy. He now drinks soymilk. I just bought a soymilk machine because it was getting expensive to buy soymilk at the store. This is our 4th month being dairy free and third week being wheat free. By observing my son carefully I have been able to single out other food sensitivities. I know this is long but I wanted to tell other parents who are starting out, to hang in there. Some think the program is expensive to maintain, and my advice to you would be to go back to the basics when it comes to preparing meals for your child. 

The GFCF diet has worked for my son, but don't stop there, if you know you have been sticking to the diet and all of a sudden you see a behavior return, it could be an allergy to another food or substance he/she recently ate that isn't on the forbidden food list.  

I asked my son to write a paragraph about places in the world he'd like to visit. 

Here's what he wrote:
"If I could travel all over the world I would go to Honduras, Venezuela, Mauritania, and Morocco. Those four places will be great and beautiful. Morocco is my favorite place because it is in Africa and Africa is my favorite continent". He even drew a map from our city to each country.

This may not be an achievement for some reading his paragraph, but for us, his paragraph is "great and it is beautiful". A few months ago he couldn't even write a sentence that made sense, now he is doing fifth grade math, and showing real feelings like, anger, genuine happiness, laughing at crazy cartoons, being able to read a book and being able to tell you what's happening in the story.

Just remember you are your child's advocate, if it comes down to an extreme like temporarily giving him/her beans, rice, green beans, and soymilk every night to get your child's meals to a basic level so you can weed out the allergy culprits and to give him/her a chance at a "normal" life, go for it.

Lots of success
Robin 
(email:
rwilliams64@netscape.net)




Sam's Story 
(age 4 years old)
by Renee

My son Sam, age 4 years old, has been on the diet for 2 1/2 weeks. His diapers are no longer a nightmare, he goes to sleep and sleeps better at night, his vocabulary has broadened like crazy, he's more cooperative, no longer walks on his toes, and seems happier and calmer. He's Here now, instead of on Planet Sammy. The diet has made a world of difference.


Eric's Story 
(age 3 1/2 years old)
by Jacquie vonHunnius 

At Christmas, a member of another list I'm on steered me to the new "Autism Treatment Evaluation Checklist" at the ARI  (Autism Research Institute) website.  You fill in the survey, and are given a "score" that is your child's baseline, which you can use to evaluate interventions and therapies upon subsequent evaluations.  My son's score in December 
was 105.  (the higher the score, the more severe the autism, but there's no way to know what 105 means in the grand scheme of things......) A week later, my husband and I were playing with Eric one night, and he was *talking to us*!  We just sat there staring at each other, jaws wide open - we sat on the floor of the hallway with Eric for 2 hours, terrified to move for fear we'd break the spell.  After much debate over what had been different enough to make this change, it dawned on us he'd not had any milk ( a drink he was *addicted* to) for 2 days.  I remembered the GFCF website, having found it on my many searched for information on autism, and logged on that evening.  Started the diet the next day. Today, I went back to the ATEC, on a whim, to see if the  diet *had* made a difference on the ATEC, I mean I thought it had, but how can I really know for certain when I'm with him 24/7?  Change can be so gradual....HIS SCORE IS 76!!!!!!!!  A month and a half on the GFCF diet, and his score dropped 29 points!  I'd call that treatment effective.

Thanks for sharing my excitement,
Jacquie
jmhunn@hotmail.com



Paul's Story 
(age 6 1/4 years old)
by Jan 


Paul is now 6 1/4. He was 5 1/2 when we started him on the gluten free diet. I had heard about the diet two years before at my attendance at the first AiA conference in the UK but I had not committed to the diet then. We firstly took out fruits as per Dr. Rosemary Waring's investigations and he did improve very slightly but this may well have also been a result of change due to age. We put off the GF diet until I attended the second AiA conference and found a company that does fresh GF bread in the UK. Paul's main diet was and is bread so not being able to get a bread he would eat made it impossible to go on the diet. We started Paul in April and had a very negative response. He went dramatically backwards and the teachers in his special needs unit called me in to find out what was wrong with him as he deteriorated so badly. We persevered as we had read it could take 6 months to get the gluten out of his diet. At the beginning of August he appeared to be coming out of a fog. He slowly improved over the next couple of weeks and then by September we noticed a marked improvement. Paul has now started to write imaginative stories at school ; asking loads of why questions and understanding the answers and he has become just a very fun loving child. We have been very pleased with his response.

Austin's Story 
(age 3 1/2 years old)
by Christine 

Austin is 3 1/2, was diagnosed May 99, just before his 3rd birthday on June 18.  We have been gluten free since April 99. Just over 6 months ago, my son received a diagnosis of High Functioning Autism.  At the time of evaluation, he was about to turn 3.  He had the speech of a 2 year old (was given 24 months speech) did not know his name, was unable to identify himself in a mirror, and had poor eye contact.  He was excessively hyperactive, frequently injuring himself and did not feel pain.  He had signs from birth, but upon starting solid foods, he began to have sleeping problems, eczema on his face, wrists and stomach, chronic diarrhea and frequent bouts of spitting up food and formula.  He was also a victim of many ear infections and he became immune to the antibiotics they were giving him. 
 
I cannot remember if the MMR shot at 15 months had any further effects.  However, it was near this time that he began to have a series of "night terrors" and it was also this time that we began to feel that his behavior deteriorated.  Not responding to our words or his name, dangerous acts like scaling up a ladder to the roof in seconds or climbing bookshelves and jumping off.  As he neared his 3rd birthday and his speech was still not understandable and he had very few words, I became concerned.  

It was at that time I had access to the internet.  I read a paper by Ron Hogan regarding links between gluten and hyperactivity.  I decided to do an elimination diet to determine what foods were affecting my son.  The results made history in my family.  First allergenic food to be discovered was almond meal (almonds) in a rice bread.  Regular hive inducing allergy. Second food was gluten.  The day we reintroduced wheat to my son, my husband immediately said "take him back off that stuff now" because my son was glued to the ceiling.  The third allergenic food was apples and apple juice.  Finally, we had to really watch and record his food because the last food and the most aggression causing food was nitrates/nitrites found in most pork products. 

 After removing all these foods it was about 1 week later that my son said his first 2 word sentence.  He said "I sit" also the first use of pronouns.  He was given the diagnosis actually about two weeks after the diet.  His pediatrician even noticed the difference.  Things have gone so fast that it makes my head spin thinking about it.  He was in a TEACCH program for a few months, but then we moved.  He was placed in a Communication Delay class in our new town.  We made our own OT at home by the use of trampoline, climbing towers, mini-air jumper, fine motor skill work, computer games and so forth. 

I sit here now with a son who is being moved into a regular preschool room with so few behaviors that he fits in fine.  His social skills are weak, I'd place him close to 2 1/2 but it's a far cry from 6 months ago being given social skills of 18 months or less.  He was re-evaluated by the school system just a week ago and he had age appropriate or higher skills for all areas of testing.  He has full language use, age appropriate and fully understandable, and appropriate eye contact.
 
We had a gluten challenge, under the supervision of a doctor, back in September 99.  He underwent colonoscopy looking for celiac disease,  which he does not have.  While on this challenge, he regressed in receptive language severely, ended up in ER with 6 stitches in his forehead from diving off our couch into a tile step, vomited, had horrible diarrhea again and was back to not eating any foods except bread products.  It was a nightmare and I will not do that again. 
 
We have not taken casein out of his diet yet.  He was on a limited dairy intake up until a month ago.  We placed him back on regular milk and the challenge is still up in the air.  I am more open to being casein free now, I have seen some regression and so has his teacher.  I think before that he was not reacting to milk, but after being "clean" for 6 months, I suspect he is becoming sensitive to it.  What has helped to make this transition work for us, is that our entire family is Gluten free.  It's not at all a bad thing, and we all enjoy the foods we eat.  I've had to learn a new way of cooking, but nothing too difficult.  And I will say that my 17 month old son who has not had his MMR shot and is gluten free and also dairy limited (only yogurt) has not had a single ear infection, shows no signs of autism or delay, sleeps beautifully and is healthy as a horse.  I have seen first handedly the success of a diet.  The only signs we can find today are his lack of danger awareness (although he feels pain now), his inability to read facial and vocal cues, and he is socially awkward, but he likes to be around kids his age.


Kevin's Story 
(age 5 years old)
by Gerry Magee

I am writing to tell you about a success story I had with my son Kevin. Kevin was born in 1995 and was a normal developing child until after his first birthday. During his first year of life Kevin suffered numerous ear infection, more than I'd like to remember. Many ear infections meant many antibiotics. After Kevin's first birthday we began to notice he wasn't a normal developing child anymore. He became very irritable, had temper tantrums he was walking on his toes, the little language he had began to decrease he was in his own world and worst of all he was very unhappy. We had him evaluated when he was 15 months and that's when he began getting home based therapy. I fell into great hands when all this happened and I met an occupational therapist that would change our lives. She suggested to me that I take Kevin off wheat and dairy {at 21 months} and I did. From that point on Kevin has progressed to a normal functioning 4 1/2 year old HAPPY boy. Back then things looked really bad and I can't believe how far he's come, after hundreds of hours of therapy, auditory integration twice, and special ed school  and MOST OF ALL a Gluten Free Casein Free diet he can now attend school at a local pre K with 18 kids in the class and he hasn't missed a beat. If there is anyone out there that could be the poster boy for GFCF Diets it's Kevin. Please try it, it does work and the success of the child depends on how determined the parents are. **Kevin was originally wheat free and 1 year later I went a step further to remove Gluten and added nutritional supplements.  Kevin was diagnosed with PDD-NOS when he was 23 months. He is living proof that you can fully recover.**

Good Luck, it's never too late!!!!!


"Sister Fights For Autistic Brother" 
Tuesday, January 18, 2000
Written by James A. Merolla
Massachusetts Sun Chronicle
http://www.thesunchronicle.com/

Beverly Horne still keeps fistfuls of her ripped-out hair in plastic bags in her closet as a reminder. Her hair is cropped close to the skull now, just in case her brother Ed reverses his recuperating form and tries to attack her again. She doesn't want to leave him many long locks to tear off. Horne's younger brother, now 41, was diagnosed with autism in 1961, when very little was known about the condition, except that it was "psychiatric," "incurable," and "life-long," leaving parents with little or no hope for their child's future.

 " I remembered my mother, a registered nurse, crying when I arrived home from third grade one afternoon," Horne says. "A psychiatrist had told her it was probably her fault that my brother had autism, according to the `refrigerator parent' theory of Bruno Bettelheim, a lauded psychologist." That dispelled theory -- once popular and painfully wrong in the 1950s -- purported that autistic children withdrew from cold, aloof mothers into their own psychotic worlds. The theory held sway until the 1960s when autism became linked to medical causes. "My mother was as warm as you can possibly be," Horne says. "You couldn't be more nurturing."

Horne also still remembers the neighborhood children who made fun of her brother because he was so different. "I remembered my fear when he would scream or have tantrums for what seemed like no reason and my anger and embarrassment when he did this in public," she says. Ed Horne lived in group homes from the age of 12 when his mother was terminally ill until early 1996 when Horne moved him home to live with her. Staff at his group home threatened to refuse to work with him unless Horne agreed to increase dosages of psychiatric medication for his behavior that had become assaultive recently. "My brother is not prone to violence unless in pain, so I moved him home with me while I searched for medical answers," said Horne, who left a thriving career as a WPRO radio reporter in Providence to be come an expressive therapist, helping wounded souls. 

After weeks of "normal" test results, exploratory surgery on Ed found a non-functioning large intestine that had to be removed. Ed Horne almost died from internal bleeding and had a second major surgery a day later. "As I sat with him during the 30 days he stayed in the hospital, holding his hand and encouraging him, I made a promise to God that if my brother lived, I would do all I could to help him have a better life," Horne said. "Someone had once told me that Grace was God's way of giving people a second chance." When Ed Horne was discharged from the hospital, Beverly Horne moved him home to Colburn Street permanently, attempting to care for him, but he was still assaulting her, screaming and pulling out her hair in fistfuls several times a week.

He couldn't sleep through the night. Yet all tests by specialists came back "normal." Horne sought out every test imaginable. All normal. It was two years before she found a neurologist who had read research indicating most children with autism have bowel problems linked to food intolerance and/or Candida yeast overgrowth in the intestinal tract. The doctor tested Ed Horne for this, since he had a history of bowel problems most of his life. It was a simple blood test. "I leapt at the chance," said his sister. Ed's blood was loaded with yeast that had compromised his remaining intestine, causing all kinds of allergies and digestion/food absorption problems. 

He also had severe food intolerance to the protein in dairy (casein) and the protein in wheat (gluten) as well as to eggs, fish, soy, citrus and bananas. Within three days of removing dairy products from Ed's diet, he was able to sleep through the night. He has not assaulted his sister in nearly two years. He continues to make steady progress on a restricted diet with supplements of key vitamins and amino acids that he was lacking. "He is much calmer," said Girard Cusson, Ed's supervisor at the Halcyon Center in North Attleboro. "He is more comfortable because the pain and the discomfort is gone. It (the change in diet) has done wonders with him." 

Ed performs a variety of jobs procured through the Halcyon Center, including sorting, collating papers, shredding them, and placing manufactured items into their appropriate boxes. "His fine motor skills are phenomenal," his sister says. "He can shuffle cards faster than the eye can follow. And he makes the bed, helps with the laundry, and sets the table. He is Felix Unger, very neat. He does more than a lot of my girlfriends' husbands. They say `Hey, send Ed over.' 

" Ed still has autism, of course, but Horne says her brother's quality of life has improved "500 percent." His eye contact is normal now. He initiates conversations and is more able to make his needs known. He is less compulsive. Co-workers, staff and neighbors have all noticed the progress. He sings and laughs often, they say, because he is free of the daily pain that plagued him every time he ate. "It's like he's there now. I was seeing my brother. He was in there all the time," Horne adds. "My admiration of my brother goes beyond words," Horne says. "I saw the intense suffering he endured during the two years after his surgery, suffering that was often misunderstood as `behavioral' when his behavior was the only way he could express his pain. 

He is still a sweet, gentle person who sincerely likes people." Since the diet change, Ed now naturally waves good-bye, something he could never do before in his life. Horne has since attended several conferences on autism that focuses on biological treatment approaches. Her own research has been exhausting. She has discovered that more and more parents are pushing for medical answers to their children's behaviors. "These mothers and fathers are strong people. They have to be," Horne says. "They are true advocates for their children." Horne says children with autism have been misunderstood for years, as has the cause of the condition.

Stories of crying through the night, recurrent ear and sinus infections, repeated antibiotic treatments, bowel problems, screaming, tantrums, sleep disturbances and aggression are common among children with autism. In general, most doctors do not look at possible medical causes because most have been taught that autism is a "psychiatric" illness. The following viewpoint is typical of their skepticism. "At this point, there is no scientific study documenting the improving relationship in autistic behavior, due to dietary changes or restrictions. It is all anecdotal," said Dr. Helen Tager-Flusberg, professor of psychology at the University of Massachusetts in Boston who is an autistic researcher. "No scientific evidence. I keep it (any reports of progress) in the realm of clinical anecdote." Horne hopes to change this view.

 "There are many causes of autism. It is partially genetic, but there is usually a trigger that brings it on and retards normal development," Horne says. "No one is born autistic." New research is showing that autism is very much linked to medical conditions that cause the other abhorrent behaviors, and that non-invasive dietary and nutritional treatments can help conditions. "I think, God, it could be so much worse," Horne says. As her brother Ed waves good-bye and goes to work, she adds, "There's so much hope." 
e-mail her at
bhorne75@aol.com.

 

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