Autism Blogs

Asperger's Diary
Lynne Soraya
Positively Autism
Nicole Caldwell
The Autism Spectrum
Lindsay M. Oberman

Do Casein Free and Gluten Free Diets really work?

By Lindsay M. Oberman, Ph.D. on May 25, 2008 in The Autism Spectrum

Many parents of children with autism choose to restrict their child's diet to eliminate Gluten (wheat protein) and Casein (milk protein). Claims have also been made that once a child has been put on this restrictive diet, their autism has been "cured", so is there any truth to this?

Well, first, let me state that unlike other "alternative treatments" for autism, if the parent ensures that the child still gets adequate nutrition, restricting gluten or casein from the diet (as far as I know) does not cause any significant risk or harm to the child. But does it help?

The jury is still out. To my knowledge, there have only been two controlled studies investigating the effect of this type of diet on children with autism. The first was a small study that did find fewer "autistic behaviors" in children on the gluten and casein free diet, however, one major criticism of this study was that it was only a single blind study, meaning the parents knew whether their children were on the GFCF diet or not, and this information may have influenced their reports. Another more recent study that was double blind found no significant difference between the group with the GFCF diet and another group without this diet.

So, what should parents do? In my opinion, this diet could help with digestive problems that some children with ASD might have, and if the child is uncomfortable because of the digestive problems, this could be contributing to their behavioral symptoms. So, if you believe that your child (as some children with ASD) has trouble digesting certain foods, and there is a way to eliminate this food without any harm to the nutrition of your child, it may be worth a try. Also, parent should be smart, read up on the topic, and realize that this type of diet is extremely hard to diligently stick to and can get quite expensive.

In the end, do I believe this diet cures autism? No. But could it help? Maybe. And could it harm? Assuming your child gets enough calcium, vitamin D, and other nutrition from the rest of their diet, as far as I know, this diet does not have detrimental effects.

As usual, I am open to any comments you have regarding this or any other topic relating to autism spectrum disorders.

Share/Email

Comments

gluten/casien free diet

Submitted by Liz Lipski PhD CCN on May 29, 2008 - 9:15am.

Dear Dr. Oberman,
I agree with you, a gluten and casein free diet doesn't "cure" autism. Nonetheless, I've seen profound changes in the children I've worked with. Most, but not all, experience changes in GI issues plus behavioral and learning improvements. The Autism Research Center posts statistics that are sent in by parents for ALL types of therapies for ASD. According to their research nearly 2/3 of children benefit from this type of diet. Also 2/3 of children benefit from the specific carbohydrate diet, which in my opinion is a great diet but very difficult to maintain because of its severe restrictions on all grains and many vegetables.

The diet I use goes farther, removing sugar, food colorings, flavorings, and is based on a whole foods diet. This diet is available for free download at my website.

For children who aren't thriving or who are extremely picky eaters, nutrition boosters may be of benefit. These are medical foods that contain free amino acids, free fatty acids, vitamins and minerals. For the malnourished child, these can be a boon.

best,

Liz

reply

Dear Dr. Oberman Thank you

Submitted by Helena G. on June 30, 2008 - 8:40pm.

Dear Dr. Oberman
Thank you for writing about this in such a openminded manner.

It might just be as "easy" as inhibited CD26/DPP iv, the peptidase whitch is responsible for degrading both prolinrich peptides (as gluten and caseinproteins), and endogenious neuropeptides (!), and GLP-1, witch is essential in insulinregulation.

Nothing is really easy in human metabolism, there is a lot of other aspects here, but still, that will explain why some (many) autistic children get so much better on a gluten- and caseinfree diet after a while + even better going lowcarb (or scd), since the latter is a meny with few carbs (and carbs does involve GLP-1 and insuline).

A small lab study found an increase in DPP iv activity in rats on highfat-diet. That´s good news for those on gfcf-diet trying to reach another milestone. The study was not designed to look at the increase as something postive, but it is still an interesting observation. High fat-low carb entusiast does report less moodswings etc. (endogenious neuropeptides needs to be broken down by DPP iv). As does those on SCD (spesific carbohydrate diet). And those on gfcf.. So they all do diets involving dpp iv...

The question might just be: Does a lot of carbs inhibit DPP iv in some mysterious way or is fat the peptidase trigger?

Anyhow.. Double blind diet studies is near impossible to do over a 12 month periode, and small 3 week studies are to short in time to get inhibited peptidases back to work.
In some children the gfcf-diet makes a huge difference (parent reports). In some adults as well (!). Just make it a try :-)
Some get a reaction (positive) after only a few weeks, others after 6 month to a year, some never... some get the famous withdrawal syndrome... Still.. those who stay on the diet, and does follow up with less sugar/carbs, more fat, less (none) colorings and some vitamins and minerals often goes another mile. This applies to many whit both ADHD, autistic children.. and might as well do wonders on some autoimmunity disorders.

So.. a diet might not cure autism, but today we do know that your choice of food does alter your gene expression, so maybe the gfcf + SCD/HFLC isn´t such a bad alternative after all. Going lowcarb/highfat and gfcf in the same time is also easy. And you don´t have to bye expensive alternative food. Lowcarb is a practically wheat-free/bread-free diet.

I´m supporting those who try for a small, but essential reason. (and because it´s not harmfull to try in any way).
I spoke to the mother of an autistic boy who were on the gfcf-diet, and asked her if he did connect with her after the change in foodhabits (many autistic children does not "connect" with their parents as normal children will), and she told me (with tears in here eyes).. that "yes".. he did.. after some month on the strikt (!) gfcf-diet he did connect with her for the first time in his life (4 years when starting diet). And if he hurt himself, or was sad.. he´ll come to her for comfort. He didn´t do that before the diet. And if he got contaminated food, he would turn away from here again for some days...

reply

I'm a mom, with 2 sons on

Submitted by Miss Maggie on July 22, 2008 - 4:54pm.

I'm a mom, with 2 sons on the autism spectrum. We started a GFCF diet about 4 months ago. The differences in our house are amazing. Both boys have eye contact now, the oldest is much less sensitive to sounds, smells, lights and touch. He even lets me tickle him a little--and giggles. He's socializing with his peers on a level we didn't think possible.

The youngest one was on 30mg of Adderall every day for ADHD and we've been able to reduce it to 10mg. A few days he's forgotten his pill and his behavior was so normal we didn't even notice he missed it until late in the day. It used to be we'd notice almost immediately when he forgot. Now I'm envisioning a future where he doesn't need any meds, something I never thought would be possible.

Almost every one sees the improvements, even people we didn't mention the diet change to, like Sunday School teachers and friends we only visit with now and then. The boys are both becoming so "normal" that it's hard to remember how difficult everything used to be.

It is challenging to maintain a GFCF diet. The only way we've been able to do it is to put the entire family on the same diet. We eat lots of rice and cook nearly everything from scratch. Gluten-Free cookbooks are a must because you have to learn to cook all over again. Our grocery bill has increased too, but eliminating convenience foods has absorbed much of that increase.

I would recommend it for anyone with kids on the autism spectrum. My boys feel so much better that they willingly stay on the diet, even when faced with old favorites like conventional pizza, and they don't complain. I don't think I've heard a single complaint about from either son about going GFCF, which is weird because they are such a complainy bunch about most things.

The main thing is that it worked for us, far beyond our expectations. I think that in the future a GFCF diet will be standard treatement for ASD.