Special Diets in Autism

In the latest installment of the IAN treatment series, we report on special diets. Many families are using these as part of their autism treatment regimen although little research has been conducted to study their effectiveness so far, and the results of these studies have been mixed. Have you tried any type of special diet? What has your experience been?

You can find our report here: http://www.iancommunity.org/cs/ian_research_reports/treatment_series_special_diets

I decided to try CF first and then GF and then combined GFCF.
This way if it worked there would be a possibility that desired results might possibly be obtained w/o having to eliminate both G and C.

Still working through it.

One suggestion for a double blind test may be this.

Take 100 subjects have parents put them all on GFCF diet.
Have a group of aides and researchers.
All subjects meet everyday for a group activity with the aides(no researchers or parents) 50 of them (the same 50 throughout the study) get GC foods and drinks, the other 50 get the diet food and drink.

Researchers don't know which subjects are 100% GFCF, Parents don't know which children are 100% GFCF.
This would probably best be accomplished in a school setting, maybe a charter school would be willing to help out.

Hi wjgi, and welcome to the IAN Discussion Forum.

Thank you for your post regarding how the GFCF diet might be tested, keeping the test "double blind." One thing I think we will all be curious to see, when the clinical trial is complete, is how the National Institute of Mental Health conducted its current study on the diet.

I was wondering what will be done or has been done to ensure that the research data will be accurate. I remember reading about Secretin and how half the children in a study were given Secretin injections improved greatly but also the other half who got salt water injections did too. What I am asking is what is being done to ensure that the progress is real and not an illusion of the parent or wishful thinking manifesting itself as a claim their child has gotten "better"

Hi Blackstarzero!

The way researchers try to correct for any effect that is NOT the result of the intervention being tested is to conduct what is called a "Randomized Controlled Trial." One way you can evaluate any study is to see how well it meets the criteria for an RCT.

See "Gold Standard of Evidence: The Randomized Controlled Trial": http://www.iancommunity.org/cs/understanding_research/randomized_controlled_trials

(By the way, the NIMH study on the gluten-free/casein-free diet is certainly a clinical trial, but I am curious to learn the details!)

We also have an interesting article that explains how people trying a new treatment at home can apply the same principles to evaluating that treatment. This article discusses all the different factors that can creep in and look like they are treatment effects when they are NOT treatment effects. The more a person is aware of these factors, the more they will be thinking critically about how any treatment is going. The article is called "Evaluating Treatments: How Do You Know When a Treatment Really Works?"

You can find it here: http://www.iancommunity.org/cs/therapies_treatments/evaluating_treatments

Connie (IAN Staff) wrote:

Hi Blackstarzero!

The way researchers try to correct for any effect that is NOT the result of the intervention being tested is to conduct what is called a "Randomized Controlled Trial." One way you can evaluate any study is to see how well it meets the criteria for an RCT.

See "Gold Standard of Evidence: The Randomized Controlled Trial": http://www.iancommunity.org/cs/understanding_research/randomized_controlled_trials

(By the way, the NIMH study on the gluten-free/casein-free diet is certainly a clinical trial, but I am curious to learn the details!)

We also have an interesting article that explains how people trying a new treatment at home can apply the same principles to evaluating that treatment. This article discusses all the different factors that can creep in and look like they are treatment effects when they are NOT treatment effects. The more a person is aware of these factors, the more they will be thinking critically about how any treatment is going. The article is called "Evaluating Treatments: How Do You Know When a Treatment Really Works?"

You can find it here: http://www.iancommunity.org/cs/therapies_treatments/evaluating_treatments

I was under the impression that the gluten/casein-free diets had been proven wrong a long time ago when they were looking at the leaky gut theory. From my understanding the researchers at the time found there were no proteins from the blood stream in the intestines, which could not have be if proteins from the intestines were slipping into the blood stream after all the holes would not be one way.

Also I am curious how does food affect the mini columns in the brain?? Because we know for a fact they are a different in the autistic brain.

Hi Blackstarzero.

I'm afraid I have no idea how the diets might effect the minicolumns in the brain. It will likely be some time before we are able to piece together all the diverse findings in autism research. There's a reason the symbol of autism is sometimes the puzzle piece.

As discussed in our Special Diet report, there actually is some research, in both autism and schizophrenia, that explores the "leaky gut" hypothesis. There is some limited evidence that the intestines of at least a subset of individuals with ASD do let through substances they should not into the body and perhaps the brain.

One thing to keep in mind whenever thinking about autism research: it is likely there is more than one kind of autism. As researchers unravel these subtypes, we may learn that a specific subtype with a specific profile responds to a specific treatment very well, while a different subtype doesn't respond to that treatment at all. Unfortunately, we haven't nailed down subtypes yet.

By the way, research into the diets is important no matter what. They are in widespread use. If they turn out to be helpful, especially to a subgroup with a specific profile, that would be very important for families to know. If they turn out to do very little or nothing, then it is also important for families and those supporting and advising them to know that. Either way, a definite answer is needed.

Who is doing this research into the leaky gut I would like to read their research data also what credential do they have? I ask because I am skeptical because the original research Dr. Wakefield who proposed this theory had first proposed that the leaky gut cause Crohn's disease which has been proven false. Further more the Lancet (a major medical Journal) has stated they should have never published his original study.

http://news.bbc.co.uk/2/hi/health/3512195.stm

Blackstarzero, the Special Diet report contains references to papers on the "leaky gut" hypothesis, and its proposed connection to a wheat or gluten sensitivity, in both autism and schizophrenia:

http://www.iancommunity.org/cs/ian_research_reports/treatment_series_special_diets

(At the end of the article you can find the footnotes that detail the articles referenced throughout.)

Keep in mind that these research papers represent hypotheses that are still being explored, not final conclusions. As far as I know, the authors of these papers are all legitimate researchers, although I'm not familiar with each and every one. You can take a look at the abstracts of the papers via the links provided in the footnotes.

(As for Dr. Wakefield, I believe 10 of the original 12 authors of the original paper published a retraction. The controversial aspect of the paper was not so much a "leaky gut" hypothesis as the fact that an association between the Measles Mumps Rubella vaccine and autism was rather haphazardly proposed in the article even though "MMR" didn't appear in the title, "Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.")

Connie (IAN Staff) wrote:

Blackstarzero, the Special Diet report contains references to papers on the "leaky gut" hypothesis, and its proposed connection to a wheat or gluten sensitivity, in both autism and schizophrenia:

http://www.iancommunity.org/cs/ian_research_reports/treatment_series_special_diets

(At the end of the article you can find the footnotes that detail the articles referenced throughout.)

Keep in mind that these research papers represent hypotheses that are still being explored, not final conclusions. As far as I know, the authors of these papers are all legitimate researchers, although I'm not familiar with each and every one. You can take a look at the abstracts of the papers via the links provided in the footnotes.

(As for Dr. Wakefield, I believe 10 of the 12 authors of the original paper published a retraction. The controversial aspect of the paper was not so much a "leaky gut" hypothesis as the fact that an association between the Measles Mumps Rubella vaccine and autism was rather haphazardly proposed in the article even though "MMR" didn't appear in the title, "Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.")

Thank you very much for the link.

My Autistic son, born in 1990 became a research model in Chapel Hill at UNC around mid year 1991. He too exhibited profound head banging, tantrums and other forms of SIB's.
After many an MRI and any other test that can be thought of, we ended up in Atlanta where he underwent a total biological breakdown of his entire system. We found that he was allergic to or was not able to process Gluten or Casien products, plus leaky gut.
He was prescribed a regiment of vitaimins that his body was missing or at least not able to process or create naturally and enzymes to help heal the leaky gut.
We also immediately put him on a gf/cf exclusive diet consisting mostly of free range baked chicken and a lemon-lime flavored drink named Recharge available at most local health food stores. Remmber this is now early 1992.
We were accused of being mean, unfit parents including visits from social services but, we stuck to our guns.
Within a short period of time, we began to notice this his Complextion began to improve, a redness to his skin disappear, sleeping through most of the night (can't have everything),more normal BM's and the head banging and tantrums subsided tremendously.

He was on this diet for many, many years. Overtime, he now seems to devour most foods in sight without any problems, only occasionaly we see a slight BM change or odor, when he has consumed to many Gluten items over a short period of time.

He is still non-verbal and profoundly Autistic but a much happier child within his routine.

Welcome to the IAN Discussion Forum, StevenS, and thank you for your post.

It is so interesting to hear your son's story, especially that he did indeed have GI issues in addition to his autism. Also interesting is that he got to a point where he didn't need to be on the GFCF diet anymore.

That brings up a point not discussed in our report: how long does a person need to be on the diet? If it is helpful for a certain subset of individuals on the autism spectrum, how does it help, and how long is it needed?

My daughter never had a leaky gut. She did have reflux as a baby but got past that after a few months and was always a good eater. I was not interested in bio med as her developmental ped who diagnosed her said it was all "unproven and not worth the huge expense and bother." But when I talked to other parents who simply said it worked, we decided to give it a try, kind of hoping in a way, that it wouldn't I suppose. It did. We have had her on the GFCF diet since she was 3 and she is now almost 6. We noticed an improvement with her after only 3 days.

When she was 4 we took her off the diet because it is such a pain in the butt to do and we wanted to see if she would be OK. I had taken her off it previously for a week here and there, only to put her right back on because it seemed like she regressed when I took her off. This time I promised myself to stick to 6 weeks off the diet to give her a chance to come back from a regression. After 6 weeks my husband and I, and my parents were horrified at her terrible regression. We put her back on the diet and she improved right away, but not up to how she was before my experiment. It took about 3 months to get her back to being where she was before...verbal and interested in her surroundings. My most recent trial was to take away soy very strictly. I did this 2 weeks ago and we have had 2 solid weeks of clarity. I am interested to see if this sticks. Two weeks of no "fog" is the longest she has ever gone since before her autism started at age 2.
Anyway, I think that if there is going to be a study of the GFCF diet, it needs to also include removing soy or it won't really be a valid study, since the proteins in soy mimic casein.
I don't really care what a study says or what a doctor says, I would not take her off this diet not matter how much it was "disproved" because I simply know that they are wrong and perhaps they will get it right in a few years, if not now. The sad part is how many children will not be helped if we can't get a study that is accurate. I would love to know why it works so well for my daughter. I have never had her tested or done any "work-ups" I just do what is recommended and watch the wonderful progress. No thanks to any of her pediatricians...only to other parents and researching on the internet.
Finally I am often congratulated by teachers and therapists at all that I have done to help her. We have done lots of therapy and spend tons of time on keeping the diet strict while being sure she has lots of health, tasty and interesting food to eat. The diet is possible, helpful, and I believe so important for our kids. It is just really, really hard to do all the way, especially with soy. I am going to write down everything in my fridge and post it on my blog I think. I hope this gets figured out one of these days, it all seems to take so long when we have so little time to make a difference.

I must raise this question are the diets address the autism or other conditions which cause stress?

If they are addressing the autism then it is logical they should affect the brain and how it is growing. We know for a fact the autistic brain is wired for more local connection compared to the NT brain which is wired for more long distance connections.

So how is the diet changing the connections from more local to more long distant connections?

We also know that autistic people have a higher rate of seizures and Synesthesia so any diet that supposedly helps the autism should in theory help those autistic people who have seizures and/or Synesthesia as well have less seizures and a reduction in their symptoms of synesthesia. Yet I have not heard anything about these diets affecting seizures or Synesthesia.

Also I have not heard any creditable researcher explain what causes this so called leaky gut.

Hi Ohjustme.

It is parent reports of success on the GFCF diet, like yours, that are so intriguing. I share your frustration with how slowly the research seems to move - I think all parents do. I am encouraged, however, that there is a clinical trial in progress. That demonstrates that researchers are taking a serious look at the GFCF diet. I'm afraid I don't know if they are eliminating soy in this trial, but they are taking a step in the right direction in any case.

Blackstarzero, to address your comments - not every treatment will address every aspect of autism. There is a reason these conditions fall under the title "pervasive developmental disorders." They truly impact multiple systems; it's part of what makes them so tough to understand, and to treat. It leaves observers asking: is depression or anxiety or meltdowns PART of autism, or just something that comes along with it sometimes? Are allergies or autoimmune issues or gastrointestinal problems PART of autism, or just something that accompany it sometimes? It gets very complicated, very fast. It also means that, whenever there's a treatment under discussion, we have to ask: treatment for what aspect of autism?