GFCF Kids New Page 6

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.

Please send:
1. Child's name/and your name
2. Child's age now
3. How long has your child been on the diet?
4. Write what the gfcf diet has done for your child.
Send to: Judy@gfcfdiet.com

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

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.

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

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

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!

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.

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.

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!!

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

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!)

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!

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

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\

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

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

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

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.

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.

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 6^th 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.

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

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]

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.

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,
Jacquiejmhunn@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.

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 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.

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.**

"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.