The  GFCF Diet Support Group

Information on this website is not to be used as medical advice  Permission has been given to print the following success stores.  These stories have been written by many parents who wish to share their story about the gluten and casein free diet and how it has improved the life of their child. Our gratitude is extended to everyone involved with The GFCF Diet Support Group.  They have taken the time and made the effort which has provided a dedicated and caring support system for every parent who wishes to use Dietary Intervention. 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 top 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. top 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 top 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 top 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! top 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. top 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. top 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!! top Name: Kenneth Age: 5-1/2 years by Sheila Rae On the Diet for 3 weeks Wow!! Where to begin!!  My son was diagnosed with Autism/Aspergers Syndrome just last year.  He has been in a Pre-Primary Impaired classroom for most of his life.  They did wonderful things for Kenneth but still something was missing.  When I first heard of the GFCF diet I was quite skeptical-to say the least.  Finally at my wits end (and when his teacher mentioned ritalin) I decided to give it a try. After all I had nothing to lose except a few bucks and everything to gain.  Well let me tell you what an incredible difference this diet has made in our lives and especially in Kenneth's life.  We have only been on the diet for 3 weeks and already we have seen much improvement.  We have not had a major meltdown the entire three weeks-we have had a couple of small ones-nothing compared to before GFCF. Kenneth was able to calm himself out of what would have been a MAJOR LEAGUE meltdown in less than 3 minutes. Before GFCF these lasted 15-20 minutes or more. Ken has calmed down immeasurably-no more jumping off the couch, no more toe walking.  Best of all, my son who in five years had said "I love you mom" once has now said it almost everyday  since he began this diet. He is now also able to give and receive kisses! The diet hasn't been near as much work as I thought it would be.  Kenneth and I are having loads of fun shopping for his GFCF foods.  He tells everyone in the grocery store that gluten and casein "give me a heart attack". We have put a pantry in our kitchen and appropriately it is called "Kens Kupboard". Everyone in the family is welcome to eat from this cupboard but Ken knows that he may eat anything in there without compromising his diet. I was concerned that it would be hard for Ken to deal with eating differently than he was used to but he has been a little trooper.  He has asked me many times during the last 3 weeks "Please don't feed me any gluten or casein mom. It will make me sick. Thank you so much for all of the info and all of the success stories at this site for that is what helped me decide to give a GFCF diet a go. It is truly a blessing to have this site to go to. Name: Baxter Berle Age: 3 yrs 1 week On the diet: 6 weeks By: Julia Berle What the GFCF diet has done for my child is nothing short of miraculous.  his speech therapist is telling all her other moms about it.  His compliance, eye contact, speech, imaginative play...you name it it has improved.  His preschool was balking at accepting him for summer school for 3 days.  Last Friday they said he could come 5 days if we wished!  They called the turn around "night and day!"  We had an infraction a few days ago and we are still paying the price.  He is also on Nystatin for serious Yeast issues...this may be helping as well.  I'll keep you posted.  Thank you for your site it has been MOST helpful. Julia Berle top 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 4000 members!) top 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! top 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 top 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."