Children With Autism Homepage

Question: Medical workers and parents--does a diet free of gluten and casein really help children with autism?

(Posted by: Missy K on 2009-03-19 22:12:05)

I would like to know personal experiences especially. I am very interested in this because my son who is suspected of being autistic has a diet VERY HIGH in both of these proteins.

Posted by: peacelily on 2009-03-24, 13:21:12

I can tell you my personal experience with my son on the GFCF diet. He has only been on the diet for 4 weeks now, and we've noticed remarkable improvements in several of his symptoms. When we started the diet, we didn't ease into it at all...we plunged in, completely gluten and casein free within two days of leaving the doctor's office. The areas where we've now noticed improvements are his vocabulary, focus, repetitive movement, tantrums and his bowel movements. A little over three weeks after we began the diet, his dad slipped and bought him some fried chicken (forgetting what it's coated with). They were visting grandparents that day, and our son's whole disposition changed within two hours. It was so obvious that the grandparents are now completely on board with us, and we won't ever have to worry about them feeling sorry for their poor deprived grandchild and offering him a cookie or waffle (BTW, we do have GFCF alternatives of these items for him, which he enjoys)! The only thing is, we are not doing the GFCF diet alone. We are following DAN protocol and working on healing our son's gastrointestinal issues at the same time. He had severe yeast overgrowth problems, as evidenced by a rash he would break out with several times a year since he was somewhere between 12 - 18 mos. old. Yeast overgrowth is common in autistic children, but we only recently found the connection, as our pediatrician was very vague and just had us applying anti-fungal cream. So, I really can't testify that the changes in symptoms are solely from the GFCF diet; they are likely a combination of the two efforts. Following the healing of his intestinal tract, we will work on boosting his immune system and then on removing heavy metals from his system. The main advice I can give you if you want to try GFCF is to make sure you research hidden sources of gluten and casein. I have my suspicions that when autistic people see absolutely no change on the diet, it is possible they may not have identified all sources, and could unintentionally still be ingesting G &C. We even went so far as to replace our son's toothpaste, soap and shampoo! Most doctors recommend a self-test period of at least three to six months. Then you can begin to try gradually adding them back. If there is an intolerance or allergy, that's when it will really become noticeable. Good luck!

Posted by: andieee@rocketmail.com on 2009-03-19, 22:26:06

According to one theory, some people with autism and PDD cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people. Research in the U.S. and Europe has found peptides in the urine of a significant number of children with autism. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly. I on the other hand, do not beleive so, but thats just MY theory

Posted by: lisa450 on 2009-03-20, 08:19:04

I am autistic, and my mother put me on a GF/ CF diet for seven years. I never noticed any difference, except that I am unusually short, probably thanks to the lack of calcium preventing proper bone development. I'm now off the diet and have absolutely no digestive problems, and have not had any more trouble with autism than I ever had on the diet. On the other hand, my non-autistic sister benefited greatly from eliminating milk, because she is lactose-intolerant.

Posted by: tiggsy on 2009-03-20, 11:29:17

It works for some, not others. Medical practice has been slow to catch on, as usual, but some doctors are now backing the diet. Food intolerances (which is what we are talking about here) often present as semi-addiction. In almost all cases, symptoms get worse at the start due to withdrawal of the opioid peptides produced in the gut by improper digestion of gluten and casein. This article may be useful - Gluten, Casein and how they cause problems: knol.google.com/ k/ frann-leach/ gluten-casein-and-how-they-cause/ 3a8zy8xf22236/ 4

Posted by: Heidi N on 2009-03-20, 23:46:50

My children are still on the casein-free and gluten-free diet. I feel nearly everyone will get results if they also avoid toxins in the food. You are likely not going to see results if you also give the MSG, dioxin, aspartame, corn syrup, GMO's, etc. Thus, it is part of the plan to reduce symptoms, but if you also do not do other things, it may not be enough to notice results. My children no longer have autism, but must stay on the diet and supplements to keep symptoms away, at present. When my children return to eating milk and wheat, it's quite noticeable and symptoms return. Sometimes, the amount of symptoms that return is enough to get them rediagnosed with autism.

Posted by: MishMash on 2009-03-21, 00:37:17

True autism is a genetic condition. Some of the chromosomes that carry autism genes also carry a gene for intolerance to wheat [not the same as allergy to gluten -Celiac ] and the casein protein in dairy products. There are also chromosomes that carry genes for intolerance to dairy and wheat that do not have the autism gene. The moment a baby that is intolerant to dairy first has some cow product the symptoms are there - white, pale bowel movements, a sore bottom and an upset baby that was previously calm and peaceful.

Posted by: ryansmom94 on 2009-03-21, 06:52:35

We started our 14 yr old son on the diet in Aug 08 and it does help him with his behavior. I can tell when he has something he shouldn't have because his behavior is uncontrolable. The medical profession doesn't acknowledge anything if it doesn't have to do with drugs. I found a good DAN Dr. (defeat autism now) and she is giving me alternative options which I love. He is now off all meds except Singular for seasonal allergies...

Posted by: helpnout on 2009-03-23, 08:39:11

The gfcf diet (gluten free-casein free) which is used mainly in helping with behavior is like any other treatment, therapy, medicine, etc. used for people with autism, it has to be done on a trial basis. Since autism is a spectrum disorder and it effects each person differently on an individual basis, some methods may work with some and may not work with others. I've known some who have used the diet and seen great improvements, some have seen little improvement, and some have seen no improvement at all. The only way to truly know if it helps your child is to try it, and like as someone else mentioned their behavior will worsen first because of withdrawal before it improves. Do your research on it, you should remove casein before gluten, and remove gluten over a period of time, casein can take up to 3 weeks and gluten up to 6 months to be completely removed from their systems, and you have to learn about ingredients/ hidden ingredients and reading labels, many household products such as shampoo can contain gluten and be asborbed into their system. Here's some links that will be helpful to you about the diet. Autism Network for Dietary Intervention: autismndi.com/ Since 1995, Autism Network for Dietary Intervention (ANDI) has been helping and supporting parents using dietary and biomedical interventions for autism spectrum disorders. They provide help and support for families using a gluten & casein free diet (gfcf diet) in the treatment of autism and related developmental disabilities. The ANDI mission is simple: "To help parents understand, implement and maintain dietary intervention for their autistic children. " The Official GFCF Diet Support Group Website gfcfdiet.com Diet Intervention for Autism Spectrum Disorders, PDD-NOS, Celiac Disease, and Gluten & Dairy Allergies/ Intoleran. Website includes lists of food: acceptable & unacceptable foods; list of unacceptable ingredients; extensive list of GFCF products; explanation of the GFCF diet & getting started including the stages of the GFCF diet; understanding how to read labels; hidden ingredients; information about nitrates, phenols & salicylates; gluten intolerance/ celiac disease information; GFCF recipes; parent support groups including local dietary intervention support groups; GFCFKids forum; community bullentin board; GFCF diet survey; GFCF diet support; diet counselors; and much more. New Diets newdiets.com Features gluten free/ casein free (GFCF) recipes: basic ingredients; condiments; breads; soups & stews; vegetarian & side dishes; meat entrees; seafoods; & desserts. Information provided on: getting started; product vendors; school lunch menus; problems baking with substitutes.