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Separate Study Shows Gluten/Casein Free Diet Can Help in Autism

Inkwell The media has been so busy covering the study of 14 children that did not show help from the GF/CF diet that it seems to have run out of ink and pixels for this one:

(From FoodConsumer.org.)

One in 100 children in the United States suffer autism.  A new study in the April 2010 issue of Nutritional Neuroscience suggests that a strict gluten-free and casein free diet may help autistic children.

The trial led by Whiteley P and colleagues from the University of Sunderland in the United Kingdom showed children with autism assigned a gluten- and casein-free diet improved their behaviors among other things.

The trial consisted of two stages. The researchers tested the diet in two groups of children with  autism spectrum disorders or ASDS. 

In the stage one, 72 Danish children aged 4 to 12 years were given the strict diet (group A) or a control diet (group B) and evaluated at baseline, 8, and 12 months for their behaviors and developmental level, inattention and hyperactivity. 

The children's behaviors were assessed using Autism Diagnostic Observation Schedule (ADOS) and the Gilliam Autism Rating Scale (GARS).  Their developmental level, inattention and hyperactivity were measured using Vineland Adaptive Behaviour Scales (VABS) and Attention-Deficit Hyperactivity Disorder - IV scale (ADHD-IV).

Data from 26 children in the dietary intervention group and 29 controls showed a significant improvement in the diet group on subdomains of ADOS, GARS and ADHD-IV measures.

Because of the observation, in the second stage, group B children were also assigned the gluten-free and casein-free diet and 18 children in Group A and 17 in Group B completed the intervention dietary program in another 12 months.

The trial results indicated that clinical improvements were sustainable although a plateau effect of the intervention was observed.

Whiteley et al. concluded that the gluten- and casein- free diet may have a positive impact on developmental outcome in children with autism.  But more studies are needed to confirm the findings.

Gluten and gluten-like proteins are found high in wheat and other grains such as oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains.

Casein is a protein found in milk and dairy products containing milk such as cheese, butter, yogurt, ice cream, whey and some margarines. It can be present as an ingredient called caseinate in non-dairy products.

The gluten-free and casein-free diet is believed to help children with autism because many of them also suffer gastrointestinal (GI) ailments including constipation, diarrhea and vomiting.

One theory speculates that people with autism cannot digest gluten and casein properly. And these proteins can be digested to form peptides that act like opiates leading to abnormal behaviors in autistic children.

However, Susan Hyman, MD from Golisano Children's Hospital at the University of Rochester Medical Center in Rochester, N.Y. and colleagues conducted a smaller study and found that the gluten-free, casein-free diet does not seem to help children with autism.

In the study of 22 children aged 2 to 5.5 years, the researchers conducted a different type of test. What they did is put all the participants on the strict gluten-free, casein-free diet for at least four weeks, and then gave them 20 grams of wheat flour, 20 grams of milk powder, either or both.

The researchers compared the children's behaviours before and 24 hours after the "challenge" and they found no difference in their behaviors.

A health observer criticized the study design saying that there was no reason in real life that children with autism on a strict diet should be "challenged". The results he said could simply hint that children on the diet had improved their behaviors in a way that a small amount of milk and wheat products did not affect them anymore.

In any way, wheat and milk are not essential vitamins so parents of the children with autism may let their children try a non-gluten and non-dairy diet to see if the diet actually helps them. They don't have to wait for others to tell them whether the diet works or not.

Autismweb.com says "foods that CAN be eaten on a gluten-free, casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn, fruits, oil, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others."

Recent studies have suggested vitamin D deficiency may play a role in autism. For more information on the association between this vitamin and autism, read here.

David Liu

Comments

Alan Roberts

"Children being children, there will invariably be slip-ups when kids get a bit of casein or gluten exposure. If they react or regress, it is absolutely solid, scientific evidence that for a particular individual the diet makes the difference."

There's a bunch of terms you're using in unclear ways and I'm not sure if you're just trying to be hyperbolic or emphatic by all those positive adjectives. :-)

Sure one self-selected sample, in one identified case, in one uncontrolled experiment, with no objective metric, over an self-selected and arbitrary period, and no blinding for any participants or experimenter *is* evidence but by the standards of evidence it isn't very good.

"Individual data cannot be extrapolated to the group, but that doesn't mean it isn't accurate or useful in the case of the individual."

It would seem that individual data is at times accurate or useful in a population and
by the same token at times not accurate or useful in the case of the individual.

"And group data frequently doesn't apply to a particular individual, which doesn't meant that it isn't accurate or useful across a population of individuals."

...and frequently group data is applicable to a selected individual and at other times not representative of the population.

So considering that both positive and negative assertions on both terms of your argument are at least arguable you are convincing me that, in the chosen respects individual and group distinctions aren't that meaningful.

Perhaps you could try rephrasing.

Alan Roberts

"Among other things, she explains why you can't do a double-blind study with a diet (duh)."

Well, her grasp of statistics is a little weak. While I agree that twelve isn't what would make me call the Nobel committee it doesn't invalidate it. I don't know the details of the proposal/grant it's conceivable the the purpose behind this study is to determine the presence of a strong positive effect - which would show up in a low n study.

She's also incorrect on some aspects of experimental procedure. You're not looking for "placebo food" which would imply something that is not food but looks and tastes like it. Just food that is devoid (to some tolerance) of agent you are researching but the participants are unable to distinguish.

Granted it isn't always easy to do this and there and working with ASD presents special challenges that are not present in regular diet studies. However that's not the same as saying "you can't". Which, for the record she didn't "explain" - she "asserted".

MinorityView

Analysis of the little study by someone who really knows her stuff:

http://nutritioncare.net/blog/?p=73

Among other things, she explains why you can't do a double-blind study with a diet (duh).

Alan Roberts--the important thing with individuals is to observe challenge situations after a few months on such a diet. Children being children, there will invariably be slip-ups when kids get a bit of casein or gluten exposure. If they react or regress, it is absolutely solid, scientific evidence that for a particular individual the diet makes the difference.

People keep confusing individual data with group data when it comes to science. Individual data cannot be extrapolated to the group, but that doesn't mean it isn't accurate or useful in the case of the individual. And group data frequently doesn't apply to a particular individual, which doesn't meant that it isn't accurate or useful across a population of individuals.

Alan Roberts

"I don't need a double-blind controlled study to know that it hurts to hit my thumb with a hammer. After a few times, I'll be more careful or maybe hire someone better at it that me to do the work. Yet, when thousands of parents put kids on GFCF and report behavior improvements, it's dismissed as some sort of mass delusion."

I'd think anyone can see that hitting your thumb with a hammer has a completely different dose/response profile and is open to far less variables than going on a diet.

For example what if you took a swing with your hammer at your hand and only received feedback (pain, etc..) at the end of the day? How long would it take for you to make the association? What you only got the feedback once a week? How many other things would you correlate to that pain before you got it right? Now you are far closer to the dose/response profile of a diet. Clearly it would be possible for you to make an error...and given a large enough group of people all trying the same thing there's a statistical certainty that you will see a group of thousands all report the same correlation - even though it is entirely by chance that they do so.

"Ignorant or Evil" is a false dichotomy. It can be the simple fact that biological systems and specifically people are actually very complicated. Double-blind placebo controlled studies are our current best defense against making these kinds of mistakes.

By the by: If you actually read that study you'll see it's not saying "can help" but rather "may help". It also seems to imply that the improvement was recorded somewhere between eight and twelve months.

Stephanie

My daughter has been on a gfcf diet for almost three years. Changes were noticed shortly after we started. She no longer had constipation, eczema, or headaches and had improved eye contact, socialization, & sleeping. We have also done digestive enzymes along with omega-3 and probiotics with the diet.

Jeff C.

"I can understand why a lot of people want to deny vaccine injury and the vaccine-autism link -- vested interests, etc. But why do so many people want to deny that the GFCFSF diet immensely helps some people with autism?"

They think we are ignorant or possibly even evil. If we say that vaccines are related to autism, then everything we say must discredited.

Suppose the AAP came out and recommended a GFCF diet. Then people might start thinking, "wasn't that promoted by those anti-vaccine nuts? They were right about GFCF, maybe there is something to this vaccine stuff".

I don't need a double-blind controlled study to know that it hurts to hit my thumb with a hammer. After a few times, I'll be more careful or maybe hire someone better at it that me to do the work. Yet, when thousands of parents put kids on GFCF and report behavior improvements, it's dismissed as some sort of mass delusion. Despite the fact GFCF can be a royal pain in the ass; we poor desperate parents keep plodding along imagining results. We have to do special shopping, buy more expensive food, engage in special meal preparation, make special plans for eating out, warn friends/family, and even sometimes threaten our schools with legal action if they can't refrain from giving our kids food.

If I were going to imagine improvements, wouldn’t it be much easier just to pretend giving them a pill helps?

I must say that the end of this article was quite refreshing:

“In any way, wheat and milk are not essential vitamins so parents of the children with autism may let their children try a non-gluten and non-dairy diet to see if the diet actually helps them. They don't have to wait for others to tell them whether the diet works or not.”

No hysteria about it being dangerous, just a suggestion that there is no harm in giving it a try.

Twyla

I can understand why a lot of people want to deny vaccine injury and the vaccine-autism link -- vested interests, etc.

But why do so many people want to deny that the GFCFSF diet immensely helps some people with autism? Just because this goes against the all-genetic-and-brain-structure theory of autism? Or because of narrow mindedness? Or maybe because some in our health establishment know that gluten/casein intolerance is a result of vaccines and therefore implicates vaccines? After all, casein hydrolysate is used as a substrate to grow some of the microbes in vaccines such as the DPT.

Jennifer

Whoooohoooo!!! Always glad to read about more studies cause one day, the western medical system has to agree that there is atleast no harm in trying! We as parents will try anything to help our children and if the pain and discomfort of gastrointestinal issues are so unbearable, there is no reason but to use diet to help! One day....one day at a time.

PhillyMom

Ethical powerhouse Dr. Thorsen was in on this study from Pediatrics 2009 stating:
"A significant association between maternal history of celiac disease and ASDs was observed for the first time".

http://www.ncbi.nlm.nih.gov/pubmed/19581261

If mom can't tolerate gluten, maybe her autistic kid can't either.

Benedetta

To put your family on a diet is a major undertaking in America.

You have to convince your spouse, and in my case grown children that are too sick to leave home.

I had to write a 15 page research paper on the whole deal. I had to beg, plead and bully to get them to do more than just glance at it.

It is time that the general practioners and nurses gets on board and help us out instead of gasping in shock when we tell them we have gone for the Atkins diet researched by the John Hopkins Univerisity.
Why you will fall dead with a heart attack they say - hump fall dead with a heart attach eating white flour, white sugar, and those white potatoes, fast releasing carbohydrates.

Gluten protein, they actually sell that stuff all by itself?! Who could eat it? Nobody.

Casein protein now that is something that unless you are allergic to it is very useful in the Atkins Diet and the Ketogenic diet (old diet for epileptics). In the Ketogenic diet the main food was cream. Milk on the other to my surprise does not have all that much protein or fat, it is mostly carbohydrates.

I finally have all three of my sick, vaccine injured family members under one doctor. I have taken my own doctor's appointment time - not for my health issues but to teach my family physcian about this whole vaccine, mitochondria, diet bussiness.

These doctors should be paying me for re--pointing out to them what they learned in nutrition class (undergraduate) not even advanced! I have to reteach them - that there are two pathways of energy; (carbohydrate to glucose) and (fat to ketones), and if there is any carbohydrates present the fat to ketones pathway will not work. Simple undergraduate class called nutrition.

Mitochondria - Krebs cycle retaught again and again in every undergraduate biology class - I memorized it my Freshman and Sophomore years in college close to 10 times. Many things can interfer in so many places, so it is obvious we need to encourage the other pathway to make energy.

This has been known for years. Taught separate and now it is time to put it all together and use it in a useful way to treat autism, epilepsy, alziheimers, bipolar (apparent to me in the last little bit), and a host of autoimmune diseases.

Jenny Allan

My grandson showed an immediate improvement when he was started on a gluten and casein free diet. We also discovered that he reacted badly to monosodium glutamate and artificial sweeteners, particularly aspartame. There was such a big difference in his behaviour afterwards that we felt guilty about not introducing this sooner.He was happier too.

kathleen

Wow, imagine this...the parents are a decade ahead of the medical establishment.
Why am I not surprised?

Gluten & Fibro Free

Interesting study, I'm beginning to wonder how many other illnesses may also be diet related

Stuart Duncan

These studies mean nothing to me. We put my son on the diet and saw a very real difference in him almost immediately.
If any of these studies were worth their salt, the tag line on ALL of them would be "as a parent, give it a try anyway".

A gluten free diet won't hurt anyone, in fact, it's better for you. And let's face it, we all know the only thing we can all do for all Autistic children is... try everything!

Wade Rankin

Well, these results are certainly consistent with the "study of one" that we did in our house. Even if it isn't a "cure" in and of itself, diet is a major component of biomedical intervention -- perhaps the foundation for everything else. Why does the media ignore the positive studies?

AnneS

More children in the study, longer duration, seems like a better study to me.

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