gluten & casein free diets for autism

With so many people telling their success stories with GCF diets, some new parents who are flustered by the massive amounts of information and new responsibilities that accompany this diagnosis may experience the placebo effect. They so desperately cling to the hope that it is working that they observe results that are not truly present.

In some cases, placebo effects can lead to real improvements themselves- kids with autism tend to show more behavioral problems when a parent is exhibiting signs of stress, as the parent experiences the belief that the child is being "cured" their stress level drops and the child's behavior begins to improve.

Timing can be a factor as well- most kids with autism experience long lasting developmental plateaus with occasional drastic spikes in development as opposed to the neurotypical upward slope- if the child had already been receiving some form of intense intervention when they begin the GCF diet it is conceivable that a certain percentage of those children would have naturally hit that spike in development without the diet.

But, there are just too many reports of success with the GCF diets for these explanations to completely debunk the idea that they might work- although I am just making a guess here, I would expect the number of cases of improvement that could be simply timing, the placebo effect and stress reduction to be between 10 and 15%.

So, what about the other 85-90% of the kids who did experience an improvement?

Parents of kids with Autism who do not have serious Gi symptoms like chronic constipation, diarrhea and regular vomiting often do not try the diet (some do, some really adhere to it- and some who do even see improvement). The parents of the kids with severe GI problems- they often do pursue this diet and they are most likely to adhere to it. Those are the kids who are most likely to benefit from the diet. Kids with virtually no GI problems are usually the ones who experience no change (again, some do- but the majority of those who experience the improvement are those with GI problems).

Improvement in symptoms overall is often noted in the children who do benefit from the diet. Some experts have come up with theories as to why that might be- some are pretty wild, some sound plausible, as a mother I would have to say that a large contributing factor is that when a child feels better they function better and behave better.

Let me also clarify...not every child with ASD who has serious GI problems will benefit- they MIGHT experience relief of their GI symptoms, they might not.

To date, this diet has NEVER been proven to "reverse autism" or "cure" it.

**** I would like to point out that if any medical professional touts this as a "Cure" rather than a treatment... they are not even using the language correctly. A CURE is something that is definitive- and requires NO additional maintenance, adjustments etc- this diet is a lifetime commitment. Get a new provider.

It is widely accepted that "autism" is not a single disorder but a broad term to describe multiple signs and symptoms of genetic problems that present the same way. Although no single gene has been found to be the causal link in autism, a number of genetic changes have been linked with with it- specifically copy number variants (CMVs) at different genes. Two children may share the same diagnosis yet have completely different underlying problems- therefore the treatment that helps a child with a CNV an one gene may not necessarily help a child with a CNV on a different gene. So far, little is known about what the CNV's mean and how they translate into symptoms, but scientist are working to figure it out.

Weird hypothetical, made up example: A child with a CNV on 7q11.2 will receive a diagnosis of autism and may be helped by some treatments while a child with a CNV at 16p11.2 who also has a diagnosis of autism may not experience ANY results from those same therapies. This is because the physical problem is not the same thing as the diagnosis. We do not yet know if these two specific variants would respond similarly or not, but in the future we will find that some of them do while others do not- this was simply a weird example.

Other disorders used to be classified as autism and have since been recognised as individual disorders and have been given names yet they are still a part of the spectrum. Hopefully someday scientists will be able to separate the different types of autism and identify effective therapies and treatments for them so that interventions can be targeted appropriately for the specific condition.

One gene that has been anecdotally linked with asd is the gene responsible for celiac disease. It would make sense then that any child on the spectrum with a family history of celiac disease would likely benefit from the GCF diet.

We tried it for a while but it was inadvisable to continue with it in my son's case as he received no benefit from it and because of his extreme oral aversion he was becoming more malnourished than before. While he was on it, we did NOT inform his teacher for the first 8 weeks (the lunch time escort was the only one who knew) I like to remain objective when determining the results! The teacher noted no improvements- she did however comment that he appeared lethargic on numerous occasions throughout the 8 week trial. His ST and OT were not informed either for 4 months- they also noted NO improvement. I personally did not witness any changes while he was on it. The only change we saw when we reintroduced regular foods was an improved appetite (I think it was because of his severe oral aversion and because his favorite foods were those that were off limits during the diet).

How do you decide? It is a tough diet- it is very limiting and can be challenging to adhere to especially when dining out. It is also usually more expensive. Since the GCF diet has been gaining popularity over the past few years more products are becoming available and some are fairly affordable.

If you have a family history of celiac or crohn's disease then your child stands a better statistical chance of benefitting from such a diet. Also if your child experiences chronic digestive problems it might be an avenue to consider.

There is a very good chance that your child will not benefit from the diet at all- try not to get your hopes up. If you do try it** see below** then give it a few months, if nothing happens you may consider doing some trials slowly introducing other foods back into the child's diet.

BEFORE YOU TRY A GLUTEN and CASEIN FREE DIET

It is a fairly safe thing to try HOWEVER -that is if you are doing it correctly.
Avoiding all foods containing gluten and casein is NOT the only thing you should be doing- it is best if you develop the diet plan with a dietician and doctor to be certain that you are doing it correctly.

What else do you need to do?
Understand the required daily intake for everything in your child's age group- figure out what nutrients they may be lacking and find a way to ensure that they continue to receive those nutrients!

You can't simply have them stop eating all breads... they will be missing fiber, vitamin B, carbohydrates etc. and those need to be compensated elsewhere- there are also trace elements and less obvious nutrients to be considered in foods that often contain gluten and casein.