Does the Gluten-Free, Casein-Free Diet Actually Work for Kids on the Spectrum?

"What are your thoughts on the GFCF diet for children with AS?"

It has been suggested that peptides from gluten and casein may have a role in the origins of Autism Spectrum Disorders (ASD), including Asperger’s (AS) and High-Functioning Autism (HFA), and that the physiology and psychology of these disorders might be explained by excessive opioid activity linked to these peptides.

Gluten and casein are getting a lot of attention in the ASD community and from physicians in the biomedical movement. Some moms and dads, physicians and researchers say that kids with AS and HFA have shown mild to dramatic improvements in speech and/or behavior after these substances were removed from their diet. Some also report that their kids have experienced fewer bouts of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF) diet.

Gluten and gluten-like proteins are found in wheat and other grains (e.g., oats, rye, barley, bulgar, durum, kamut, spelt) and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.

Casein is a protein found in milk and foods containing milk (e.g., cheese, butter, yogurt, ice cream, whey, some brands of margarine). It also may be added to non-milk products like soy cheese and hot dogs in the form of caseinate.

There is growing interest in the link between AS/HFA and gastrointestinal (GI) ailments. One study found that kids with AS born in the 1990s were more likely to have gastrointestinal problems (e.g., constipation, diarrhea, vomiting) than AS kids who were born in the early 1980s. Some young people use the GFCF diet mainly to ease gastrointestinal problems and food allergies or sensitivities.

According to one theory, some young people with AS and HFA can’t properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the child’s behavior, perceptions, and responses to his or her environment. Some researchers now believe that peptides trigger an unusual immune system response in certain youngsters. Research has found peptides in the urine of a significant number of kids with AS and HFA. A physician can order a urinary peptide test that can tell if proteins are not being digested properly.

Do you need the advice of a professional who specializes in parenting children and teens with Autism Spectrum Disorders?  Sign-up for Online Parent Coaching today.

Researchers continue to examine the effectiveness of the GFCF diet, which has not gained widespread acceptance in the U.S. medical community. One recent study found behavioral improvements in kids on a GFCF diet, while another study found no significant effects from the diet.

Medical tests can determine if an AS or HFA youngster has an allergy to gluten, casein and other foods (e.g., eggs, nuts, soybeans). Before changing the youngster's diet, parents should consult with a physician to make sure they are providing a healthy diet and, if necessary, nutritional supplements.

Some advocates of dietary intervention suggest removing one food from the diet at a time, so parents will know which food was causing a problem. It also is helpful to ask young people who don’t know about the dietary change if they see any improvement after a few weeks. It's often suggested to remove milk first, because the body will clear itself of milk/casein the quickest. Gluten may be removed a month after the elimination of milk. It may take up to six months on a gluten-free diet for the body to rid itself of all gluten. That is why most advocates suggest giving the diet a trial of six months.

The diet can seem like a lot of work, at first. Parents must carefully read the ingredients on food packages. Beware of "hidden" casein and gluten in ingredient lists (e.g., curds, caseinate, lactose, bran, spices, certain types of vinegar, etc.). It may be hard to locate an acceptable substitute for milk, although many AS and HFA kids do adapt to the GFCF soy, potato, almond and rice milk substitutes available. Look for varieties that are enriched with calcium and Vitamin D. In addition, many moms and dads provide vitamin and calcium supplements to their kids on the diet.

Many communities have health food stores or regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles, cereal, and pasta made of rice, potato or other gluten-free flours. There also are online retailers that sell GFCF foods and vitamins. Also, some web sites list commercially-available GFCF foods (e.g., Heinz ketchup, Bush's Baked Beans, Ore-Ida Golden Fries). Some prepared foods originally developed for young people with Celiac Disease (a form of gluten intolerance) now come in casein-free varieties, too. To save money, some families choose to make their own GFCF foods.

Some of the foods that can be eaten on a GFCF diet include:
  • amaranth
  • beans
  • buckwheat flour
  • corn
  • eggs
  • fish
  • fruits
  • meat
  • nuts
  • oil
  • potatoes
  • poultry
  • quinoa
  • rice
  • shellfish
  • sorghum
  • soy
  • tapioca
  • teff
  • vegetables

Besides gluten and casein, some moms and dads report that removing corn and soy led to equal or greater improvements in their AS and HFA kids. Because soy protein is similar to gluten and casein, some diet proponents recommend removing it if the youngster seems very sensitive.

Although the theory behind the GFCF diet may appear rather peculiar in some respects, there are a number of pieces of evidence which seem to support its use on at least an experimental basis. The ideas are compatible with virtually all the accepted biological data on AS and HFA and are thus worthy of consideration.

Highly Acclaimed Parenting Programs Offered by Online Parent Support, LLC:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism


Here's what other parents have had to say:

*   Anonymous said... We saw big improvement. I don't see the diet as expensive. I see the diet as more expensive than wheat...but not expensive. You are raising the price you pay for bread. Not your mortgage. After a few months the modifications weren't that hard. We make bread from a mix. We use corn tortillas. We eat rice, not a lot of pasta. If you still have eczema maybe check into corn intolerance, egg, dairy (if not already removed) or soy. If no improvement suspect whatever food he really loves. Hope this helps! To me the improvement was SOOOOO worth the "learning new way to cook/eat". Yes he was PICKY! :-) 

•    Anonymous said... Big improvement on it. 1 of the books I read when looking at it talked about leaky gut, and it was best to have your child to get tested for the proteins that get leaked from the gut into the blood stream, if this wasn't happening it wouldn't work. In NZ we can't test for, but we get kick back in behaviour if having too much dairy. We found it was more dairy that affected his behaviour than the gluten. Mind you we have also removed artificial products, but I am 1 of the lucky 1's that has a child that will eat most things and enjoys fruit and veges especially green veges.

•    Anonymous said... My son(6) has been on the GFCF diet for 8 months now. We worked with a biomedical doctor named Dr. Woeller. He recommended quite a few all natural supplements to make up for the loss in vitamins. I don't think the diet alone helped much with behavior, but I do believe it has helped with his stomach problems. The vitamins have been the main source of behavior improvement.

•    Anonymous said... Personal experience: it didn't help us. Doctor: my son's doc says that he has seen very few children on whom it has "worked", so he suspects (without having studied it) that those children were gluten intolerant or sensitive, while most children wtih AS are not. It think it's worth a try to see if it works -- though it can be an expensive and time-consuming (for the parent) diet. We have actually found that eliminating food dyes helped with my son's hyperactivity (not his AS). Good luck!

•    Anonymous said... We went with a "clean" diet. Not alot of processed foods. Within 2 days of taking away milk, my son at 13 had a clearer mind. We have also gone gluten free. Yes, a very time consuming diet.

•    Anonymous said... We've done the gluten free with our kiddo when his eczema was so extreme, long before we even considered there was something else going on. We also didn't see a change in either behavior or eczema. However, lately we have been wondering about a nutritional deficiency of some sort. He probably is my most healthy eating child by nature but there are things such has his complexion, ability to heal after bites and scratches, etc that make us wonder about some sort of deficiency. Any suggestions for what to look into there?

•    Anonymous said… We've made changes in my sons diet and have seen a huge difference in him. This year at school has been a turn around from previous years. I believe that some changes in the diet can help. They put a lot of bad stuff in foods. Make the switch to organic if you can and stop buying processed foods.

•    Anonymous said… Tried gluten free diet tried preservative free and organic best results so far.... he is taking NAC and Abilify which is working wonders

•    Anonymous said… The whole reversing cureing i dont agree with but i do think in some kids change in diet can help with some issues and to a degree but it does not work in all.. pretty much same with many methods to help they do to a degree and each child reacts to each method differently but its not a cure or a reverese as the autisms is still there wither it looks less obvious or changes have happened .....

•    Anonymous said… The best cure for autism is really curing societies conformity. I believe it both genetic and environmental. We all are made from both. Problem is when we start labeling what is normal and what isn't. I'm all for better health but that includes accepting people as they are and not fixing them to suit our needs as parents or a society

•    Anonymous said… Perhaps the world shouldn't be so concerned about "curing autism" as they should be curing ignorance to difference. I would rather be surround by a world full of autism than a world full of ignorant people who don't see acceptance as a "cure" to most "problems".

•    Anonymous said… Note to skeptics: If you believe that reversing the symptoms of autism is an impossibility, do a Google or YouTube search for "reversing autism" and witness for yourself accounts from other parents who have had such good fortune!

•    Anonymous said… I'd like to know how I could have changed my daughter's diet when she first exhibited signs of ASD - as a breastfed newborn with sensory overload issues, who needed to be tightly swaddled, providing deep pressure massage? I call b*llocks on diet as a *cause*, though I accept that changes to diet might improve some issues, I do not believe for one minute autism can be reversed. I very much believe in the genetic link - my husband though undiagnosed, is pretty clearly on the spectrum, and both of my children with him are as well (they got the best of us both?). My daughter by my former husband is not, though she does have increased traits.

Please post your comment below…

Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...