Here is the issue. I am a mom with two boys on the spectrum. They are both different and have different issues. Just like the rest of the population.
I personaly do not think that something like leaky gut has CAUSED their autism. I will say though that my youngest had some horrible stomach issues. Fortuantely his pediatrian witnessed an episode and it was obvious he was in pain, but he is non-verbal can’t express the nature of his pain. Numerous tests were done and evertyhing came back normal. We KNEW something wasn’t right witth him.
We tried diet..in our case just gluten. Within 12 hours his BM’s were normal (after a year with serious problems) and within 3 days— no more episodes. It has been a year and he is doing great. I
s he cured? No. He just feels better and is able to concentrate on therapy, so he is progressing faster.
We tried this diet with our olderr son..no differences..and he never suffered from episodes like his younger brother.
I think the research is looking for the wrong thing. They are trying to say that it is the reason, why I think it is just a part of the bigger picture.
I have scleroderma..an autoimmune diesease. With it comes a variety of problems. The disease is different for many people. I have had a lot of gut problems and experimentEd with diet. Come to find out, when I took gluten away, my gut problems disappeared. Both me and my son have tested negative for Celiac.
Also, from my understanding there is not good solid testing for food inolerances. The only way is to experiement by taking certain foods away and seeing if you get better.
When you have children who are non-verbal or who can’t adequately express physical issues, you can only really test this by behavior. Parents and doctors need to work together. Sadly, I thinik a lot of doctors just roll their eyes with parents and many parents dont’ trust their doctor.
Our pediatrician explained it to us this way. He has a few freinds who were suffereing from some physical problems and medical tests always came back negative. Throuugh some investigation they decided to take MSG and several other preservatives out of their diet. Within a couple of weeks they are better. Their is no scientific research to back their claim. But the antedotal information is obvious. You wouldn’t say that these people are crazy. When you experience your child waking up every night screaming, unable to sit still, grabbing you and crying in pain and then you take something out of his diet and your happy child is back… the antedotal information is glaring.

Trace – Your comment is a non sequitur. Whether your kid has gluten intolerance is not related to his autism. It just means he had gluten intolerance. You even said that you saw no differences when you put your older son on a gluten-free diet.

The point that you bring up doesn’t relate to this study at all. You’re talking about the difficulties that parents and doctors face when trying to treat GI problems in non-verbal children. Of course, it’s hard to diagnose and treat health problems in someone who can’t tell you what’s wrong. This is a legitimate concern for parents with ASD kids, but it’s completely unrelated to the scope of this study, which only looked at diet as a treatment for Autism itself, not as a treatment for actual GI disorders.

This research shows that the hypothesis that gluten- and casein-free diets are not an effective treatment for ASD symptoms. Since putting a child on a gluten- and/or casein-free diet would leave the child with nutritional deficiencies, it’s best to only use this type of diet if it’s indicated for medical reasons.

Lexi,
Your comments are typical of a person who has his opinion and can’t be bothered with contrary facts. The point Trace is making is that all possibilities must be considered with a non-verbal patient. The elimination of pain is a great step forward in the ability to use therapy. I assume you are making the point that you eliminated all patients who had ANY other symptoms or conditions. If you did not, your conclusions may be invalid. For patients with glutin intolerance the source of pain must be removed before conclusions can be drawn. Incidentally, what percentage of your non-verbal patients improved if it was determined they had pain symptoms from unrelated problems?

I’d listen to a million mothers over a bogus study anyday.

This study doesn’t appear to claim there’s no relationship between diet and autistic behaviors. This study appears to claim others’ research doesn’t support the relationship.

My research does. My son’s autistic behaviors were strongly correlated–changed dramatically–with a g/c free diet. Post hoc, ergo propter hoc?

Trace
Thanks for your input, as a concerned mother and a scoleraderma ‘Survivor”. I wish that there were more “Bogus” studies being completed that isolate on the many contributory and/or causal factors in both of these diseases.

For your database :
My wife recently passed away as a result of the severe CREST Syndrome Scoleraderma… she had a multitude of factors (including leaky Gut), also was sensitive to both lactose and gluten. Unfortunatley the removal of those had no affect upon the Syndrome.( Her “gut” ultimatley shut down and had to be feed intraveneously for her last 18 months.)

Please keep up your searching for your breakthrough.

“Talent hits a target no one else can hit; Genius hits a target no one else can see.”
- Arthur Schopenhauer

Lexi, withdrawing gluten or casein from someone’s diet does NOT necessarily create nutritional deficiencies. There are plenty of other foods to supplement B vitamins, calcium, etc. And if there is an extreme food sensitivity or allergy, that food would like likely have limited absorption and negative consequences.

I agree with those who tried something, notice if it worked and then took action. There are many instances where something works inexplicably when science doesn’t seem to agree.

Sarah and Trace,
Taking anecdotal evidence and “listening to a million mothers over a bogus study” over science is why there is so much misinformation, bad advice and a growing epidemic of diseases in certain parts of the world revolving around autism. This “I know what I know i don’t care what science says” attitude that has been promoted by people lie Jenny McCarthy and you in forums like this is truly hurting people – diseases like measles are making a comeback because of it. Just stop with the emotion and listen to the scientists and their peer-reviewed work before you do any more damage.

Allow me to mention several key issues here involving this study:

1. This isn’t an actual research study. It’s a review of 15 studies done by other researchers. So, there was no new testing done to determine the effectiveness of the GFCF diet is this study.

2. The results of THIS study don’t actually find that the diet is ineffective, as the news story generated by this study has implied. Notice the title of the news story: “Gluten and casein free diet not effective for autism treatment.” BUT, Here is the abstract:

Gluten and Casein free diets in the treatment of autism spectrum disorders: a systematic review

Abstract
This paper systematically reviews research on the effects of gluten-free and/or casein-free (GFCF) diets in the treatment of ASD. Database, hand, and ancestry searches identified 15 articles for review. Each study was analyzed and summarized in terms of (a) participants, (b) specifics of the intervention, (c) dependent variables, (d) results, and (e) certainty of evidence. Critical analysis of each study’s methodological rigor and results reveal that the current corpus of research does not support the use of GFCF diets in the treatment of ASD. Given the lack of empirical support, and the adverse consequences often associated with GFCF diets (e.g., stigmatization, diversion of treatment resources, reduced bone cortical thickness), such diets should only be implemented in the event a child with ASD experiences acute behavioral changes, seemingly associated with changes in diet, and/or medical professionals confirm through testing the child has allergies or food intolerances to gluten and/or casein.

Notice that the title of the actual study says nothing about the diet being ineffective. And the abstract does not say that they found the diet ineffective. Here is what the abstract does say:

the current corpus of research does not support the use of GFCF diets in the treatment of ASD.

Basically, their research showed that when they studied the 15 studies, their own interpretation was that when you group all the results, there isn’t enough evidence to show the diet works in enough children to warrant everyone trying the diet. BUT, they didn’t find that the diet does NOT work.

3. The supposed harm that the abstract refers to (reduced bone thickness) can easily be prevented with calcium and vitamin D supplementation.

4. Interestingly, the abstract actually DOES recommend the diet in two groups of children: 1 – those who have shown behavioral or developmental improvements from the diet, and 2 – those who are tested and found to either be allergic OR intolerant. This is a direct conflict with the message that the news stories are giving. THE AUTHORS OF THIS STUDY ACTUALLY RECOMMEND THE DIET!

Here is a list of studies that I have been using to justify the recommendation to test kids for gluten and casein problems, to continue the diet if improvements are seen, and even to try the diet if a parent does not have access to testing (especially if symptoms of food allergy are present):

Gluten and casein effects specifically in autism

Jyonouchi H. Food allergy and autism spectrum disorders: Is there a link? Current Allergy and Asthma Reports 2009;9:194-201.

Jyonouchi H, et al. Dysregulated innate immune responses in young children with autism spectrum disorders: their relationship to gastrointestinal symptoms and dietary intervention. Neuropsychobiology. 2005;51(2):77-85.

Jyonouchi H, et al. Evaluation of an association between gastrointestinal symptoms and cytokine production against common dietary proteins in children with autism spectrum disorders. Journal of Pediatrics 2005 May;146(5):605-610.

Aytac U, et al. CD26/dipeptidyl peptidase IV: a regulator of immune function and a potential molecular target for therapy. Curr Drug Targets Immune Endocr Metabol Disord. 2004 Mar;4(1):11-18.

Vojdani A, et al. Heat shock protein and gliadin peptide promote development of peptidase antibodies in children with autism and patients with autoimmune disease. Clin Diagn Lab Immunol. 2004 May;11(3):515-524.

Vojdani A, et al. Immune response to dietary proteins, gliadin and cerebellar peptides in

children with autism. Nutri Neurosci. 2004 Jun;7(3):151-161.

Fan H, et al. Dipeptidyl-peptidase IV/CD26 in T cell activation, cytokine secretion and immunoglobulin production. Adv Exp Med Biol. 2003;524:165-174.

Reichelt KL, et al. Can the pathophysiology of autism be explained by the nature of the discovered urine peptides? Nutr Neurosci. 2003 Feb;6(1):19-28.

Okada Y, et al. Endomorphins and related opioid peptides. Vitam Horm. 2002;65:257-279.

Schade RP, et al. Cell surface expression of CD25, CD26, and CD30 by allergen-specific T cells is intrinsically different in cow’s milk allergy. Allergy Clin Immunology. 2002 109(2):357-362.

Jyonouchi H, et al. Innate immunity associated with inflammatory responses and cytokine production against common dietary proteins in patient with autism spectrum disorder. Neuropsychobiology. 2002 46(2):76-84.

Mentlein R. Dipeptidyl-peptidase IV (CD26) – role in the inactivation of regulatory peptides. Regul Pept. 1999 Nov 30;85(1):9-24.

Fleischer B, et al. Molecular associations required for signaling via dipeptidyl peptidase IV (CD26). Adv Exp Med Biol. 1997;421:117-125.

Tuckova L, et al. Molecular mimicry as a possible cause of autoimmune reactions in celiac disease? Antibodies to gliadin cross-react with epitopes on enterocytes. Clin Immunol Immunopathol. 1995 Feb;74(2):170-176.

Reichelt KL, et al. Nature and consequences of Hyperpeptiduria and bovine casomorphins found in autistic syndromes. Dev Brain Dysfunct. 1994 7:71-85.

Shattock P, et al. Role of neuropeptides in autism and their relationships with classical nerotransmitters. Brain Dysfunct. 1990 3:328-345.

Iyngkaran N, et al. Causative effect of cow’s milk protein and soy protein on progressive small bowel mucosal damage. J Gastroenterol Hepatol. 1989 Mar-Apr;4(2):127-136.

Reichelt KL, et al. Biologically active peptide-containing fractions in schizophrenia and childhood autism. Adv Biochem Psychopharmacol. 1981;28:627-643.

Gluten-free/Casein-free diet

Hsu CL, et al. The effects of a gluten and casein-free diet in children with autism: a case report. Chang Gung Med J. 2009 Jul-Aug; 32(4):459-465.

Knivsberg AM, et al. A randomized, controlled study of dietary intervention in autistic syndromes. Nutr Neurosci. 2002 Sep;5(4):251-261.

Knivsberg AM, et al. Reports on dietary intervention in autistic disorders. Nutr Neurosci. 2001;4(1):25-37.

Pellecchia MT, et al. Cerebellar ataxia associated with subclinical celiac disease responding to gluten-free diet. Neurology. 1999 Oct 22;53(7):1606-1608.

Reichelt KL, et al. Gluten, milk proteins and autism: dietary intervention effects on behavior and peptide secretion. J Appl Nutrition. 1990 42(1):1-11.

Joseph,
I am sorry to hear about your loss. Sclero is one mother of a disease and I spend a lot of time telling the docs..I HAVE to be ok, because of my boys. As weird as this sounds, I often times feel fortunate that I have to focus my thoughts and energy on someone else. I have been very fortunate that medications are working and keeping the really horrible issues at bay.

In regards to my comment about the study–I do not think that my boys have autism because of any vaccination. The more I learn…especially considering the status of my autoimmune disease and the medical history of both sides of my boys families…I strongly believe that their autism is associated with genes. Maybe there was some enviormental trigger, but in our case, I just don’t believe it to be the case.

What I am trying to convey…in probably a poor way… is that diseases, conditions, disablities..however you want to class either of these… travel down more than one path. With my disease, I have an excessive laundry list of problems. Not every individual is going to have the exact same list or the exact same outcome from various treatments. But if you get a group of us with scleroderma in a room and we start chatting, we often have similar experiences and helpful advice. Hey, at this point if it doesn’t kill me or cost an outrageous amount of money I will give it a try.

I believe that this is similar to what is happening with iinviduals with ASD. Not that it is difficult to help kids who are non-verbal, but Maybe for some genetic reason these people are more inclined to food allergies or intolerances, but no one really knows because so many are unable to verbalize what they feel.
Again, it is not that food/leaky gut is causing the autism, but for some reason people with ASD are more prone to the problem and that in turn affects their ASD symptoms. My disease causes an immense amount of physcial pain. I spoke to some people who went gluten-free and they feel better. I gave it a try and it worked. I still feel pain. I still have a disease. But I feel better and am able to have a better quality of life. There are verbal adults out there with ASD who state that they have foods they have to stay away from. Maybe gluten, caisen, both or just things like preservatives. Is this more prevalent in the ASD community then in the neuro-typical community? No one really knows, but wouldn’t that be interesting to find out. And from my limited experience science can only say for sure that people have food allergies. The only way to see if someone has an intolerance is through an elimination diet.. Take a certain food out and see what happens. There are no solid scientific ways to check for food intolerances, but through observation.

I understand that their is a great deal of mis-information. But I worry that these studies just give doctors more of a reason to roll their eyes at parents. I know if my pediatrian didn’t view first hand what occured with my son, he would have done the same thing.
I realize the study is about the “cause”. What I am saying is that seems to be the only type of studies out there, instead of how diet can affect symptoms and why it does. I would LOVE to know from solid scientific research WHY the body is reacting the way itt does, but it is mostly conjecture. So, I have to do a lot of feeling around in the dark. As a parent, I would really love not to have to do that when it comes to my kids..

And in regards to the post that my comment causes damage….I don’t intend any of tthis to be a personal attack and I would appreciate all people to do the same. I am sure that many researchers sit and debate about different theories, none of it is a personal attack. Observation is a part of science. The arguement may be that parents are not objective..ok..then come join my family and observe.

You can offer other ways for poeple to receive vitamins, etc…,but once again, parents are forced to figure it out on their own. Wouldn’t it be great to be able to go to your doc, and have an informative conversation..like I would like to try xyz diet, how do I make sure he is getting what he needs elsewhere…believe me, I have had my share of snake oil salesmen and I tell parents I meet to be cautious.
And as much as one wants to take emotion out of the equation, that is impossible. I believe that many medical breakthroughs happen because those discoveries came from individuals emotionaly invested. Why is anyone searching for a cure for ALS? Because they want to get some prize…no…because they want to prevent the physical and emotional hardship that accompanies the condition. Childhood cancerr has taken incredible strides in the last 30 years…due to no one wanting to see children and families in pain. Emotions, I am sure played an important part in the research done.

If scientists, researchers and doctors has spent the year of 2008 with me. Spent the year without sleep and a child screaming in pain.. they would become emotionally invested.
Sadly, comments telling parents to shut-up and listen are the very things that have caused such a riff between parents and doctors. There is so little trust and that is sad for both parties.
I appreciate the other parents that have shared their stories here and hope that further research will come out about the things I expressed above and that soon scientists researching ASD will stop lookihng at the creation of studies through the eyes of a petri dish and begin looking through the eyes of parents that are searching for a little hope and a little help.

Bob Sears,
THANK YOU…I was writing while you were and just read this….The media drives me crazy…I have seen several references to this study and they all refer to it by titles…”don’t try this”..etc… And I am sure that most people will take that away instead of the truth about the study. Thank you. Nice to know that I am wrong about what research is out there…Looks like I have some reading to do.
Thank you once again,
Tracey

Trace- Our 3 yr-old daughter was recently diagnosed as having mild to moderate autism. We started her on the GF/CF diet, and in just a month have witnessed positive changes. That’s not what prompted me to post here, though; this is usually not my thing. I was taken aback when I read that you have Scleroderma because so do I. Mine is the “morphea” type, so I don’t have the same abdominal symptoms as you, but it’s still challenging. Although our youngest was the one diagnosed, I suspect possible Asperger’s in our son, our oldest. So, it’s possible that both of my kids are on the spectrum, such as yours. I’m now even more convinced that genetics plays a huge role, not to say that other enviromental factors may not influence the disorder. I’ve not done any research on this, but I wonder if there is a link between autoimmune disease and autism. Did I make my daughter, my kids, this way?

Trace:
Thank you so much for sharing your experience! I really appreciate it. Do you have Facebook? Please add me.

Juie,
I agree…I think that there is a huge connection with autoimmune disease and autism and sometimes I think that my family is ground zero for some sort of study. I have CREST (sclero–with recent progressive form) and I suspect Ceilac disease; my husband has ulcerative colitis. I have two aunts..one with RA and the other with lupus and both of my sons have autism one with a gluten sensitivity I feel pretty confident that we had an intensive look at our genes it would be eye opening. Of course, this is just suspiscion.
I have read a few random/small studies suspecting some sort of link, but I don’t think that anyone has uncovered any hard data. I asked a genetist at a conference one time but he just nodded his head and brushed me off. Hopefully, someone is doing some good research out there.
Hopefully, one day, autoimmune disease will be a risk factor for preganant women having children with autism and they will keep a closer eye earlier on these children at higher at risk.

Don’t kick yourself in the head over it. It is what it is and right now it is about looking at today and what you can do now. I am like you and am amazed at how much more there is still to learn about our genes.

I realize that diet won’t work for everyone. But it is always worth a try. It seems that as with most of the posts here..you pretty rapidly know if it is advantegous for your child or not. It seems to be noticable in your situation.

Good luck.

. производим, производим и продаем в интернет магазине, Пушкино. Наша продукция осуществляется на современном оборудовании, высоким качеством.

They aren’t taking into account all grains here. Corn, rice, millet etc….all have gluten in them. Low amounts yes but enough to keep the GFCF diet from working in some people. Absolutely. At least that is my theory. If GFCF isn’t working, try going Paleo.

Thank you, Bob, for giving more info on the actual studies!

For those frustrated with testing, consider the DNA testing (currently available through Entrolab in TX – you can send this yourself), & if you’re still ingesting Gluten, there are secondary tests. http://glutenfreern.com/genetic-testing/ gives information. A geneticist at our local college is making gluten sensitivity/celiac ‘family trees’ & predicting what combo of genes others in the same family might have.

Our family learning disability is Dyslexia, rather than Autism, & a GF diet for my 6 & 11 year old grandchildren (& the rest of the family :) is helping all of us. The older girl’s reading level rose 10 points last fall. After genetic testing revealed my daughter & her girls each had two genes for the sensitivity, we all went gluten free (as I knew I’d passed one on!) My biologist former husband has two sisters with celiac, & is himself ‘lactose intollerant,’ yet hasn’t been tested for the gluten issues.

Gluten Free RN, in Corvallis Oregon, has observed that any of the children’s ‘Alphabet soup of learning problems’ can often be lessened or reversed by following a gluten (& often casein free) diet. Here are some of her thoughts on the link between the two.
http://glutenfreern.com/celiac-disease-autism-link/

I was disturbed by the comment in this article: “Given that a variety of adverse consequences are known to be associated with a gluten- and casein-free diet,” Mulloy says … as we’ve found the opposite to be true – given that a variety of adverse consequences are known to be associated with eating gluten – since it cause inflammation, leaky gut, malabsorption & resultant vitamin & mineral deficiencies! We can eat some cheese, but also avoid most dairy.
My daughter’s Vitamin D levels were extremely low before going Gluten Free, & she had frequent migraines, which have reversed. Her 11 year old was on seizure meds for several years, & after testing last summer, when she’d been gluten free for a year, and normal EEGs, she was able to gradually go off them!

Many skin problems are related to gluten sensitivity or celiac disease, my daughter has DH, which rarely flares up since going gluten free. My ‘itchy scalp’ (since childhood) has also cleared up – we need to avoid lotions & hair products that contain gluten to have clear skin!

Dangerous Grains, Healthier Without Wheat, & Cereal Killers are some of the books that detail the dangers in eating a diet heavy in grains. Wheat alone has more than double the amount of gluten it contained in the 50s & 60s, & perhaps 1/3 of the US population are gluten sensitive, while about 1% have celiac) And some folks do react to the similar giladins (proteins) in other grains. My favorite seeds (beet family) have become quinoa & amaranth, which cook in 20 minutes, & are easy to find OG.
The biggest challange in going gluten free is to truly avoid it, as it makes its way into so many products, & I realize that many Autistic children are fussy eaters, another challange! It is also harder to find OG gluten free flours, etc.

Coconut oil & milk are very healing for the brain & whole system – while at the other end of the spectrum, Dr Mary Newport has reversed her husband’s Altzheimer’s by including coconut oil in his daily diet! http://www.coconutketones.com/ – my granddaughters LOVE my coconut milk kefir, & this is a lovely dairy free way to include more probiotics!

Good luck to all with children or other family members with these issues!