Article

Gluten-Free Diet and Children with Autism
Published Nov 6, 2009, last updated Dec 7, 2009

What is it?

A gluten-free diet is an eating plan in which gluten (a protein found in some grains) is eliminated from the diet. Foods and drinks containing wheat, barley, rye, oats, or anything made from these grains are avoided. A gluten-free diet is often used for children with autism in combination with a casein-free diet. The casein-free diet calls for the elimination of milk protein (casein). Both diets are called elimination diets because a particular type of food is eliminated from the child’s meals and snacks (1).

Proponents of the gluten-free diet say that many children with autism have gastrointestinal difficulties that make it hard for them to digest certain grains properly. There are different possibilities for ways in which this could affect children with autism. The most studied theory is that eating gluten leads to high levels of protein by-products, called gluteomorphines, in some children with autism. These by-products may then affect behavior like a drug would. Specifically, in these children, gluteomorphines could reduce their desire for social interaction, block pain messages, and increase confusion. If gluten is taken out of the diet, the idea is that this will reduce the level of gluteomorphines, and behavior will improve as a result (2-4).
What's it like?

Parents who choose a gluten-free diet for their child must become aware of the ingredients of everything in their grocery cart. Products containing wheat, barley, rye, or oats in any form should not be purchased. Foods containing modified food starch also contain gluten, but modified corn starch does not. Maintaining a gluten-free diet can be hard to do at first because gluten is present in many prepared foods. However, parents can take a gluten-free cooking class or read a gluten-free cookbook (see Resources) to learn how to cook without gluten and still provide enough nutrition for the child (see Is it harmful?).
What is the theory behind it?

Gluten is broken down in the intestines into several by-products, including one called gluteomorphine. These by-products are much more common in the urine of children with autism than in children without autism. Some scientists have concluded that they are leaking from the intestines into the blood of these children (2, 5). Many research studies report that children with autism often have gastrointestinal problems, including intestinal leakage (5). The argument is that, if gluteomorphine is being absorbed into the general circulation in children with autism, then it could affect behavior (2-5).

In support of this theory, there is evidence that blocking at least some of the action of gluteomorphine improves the behavior of children with autism (6). Moreover, recent evidence of a genetic mutation common among children with autism has been traced to a gene involved in gastrointestinal function (7).
Does it work?

The effectiveness of elimination diets in improving the behavior of children with autism has only recently been scientifically researched (8). This research has almost always examined diets that are both casein- and gluten-free.

One well-controlled study focused on children with autism who had abnormally high protein by-products in their urine, and therefore were more likely to be sensitive to casein and gluten (see What is the theory behind it?). One group of these children was fed a strict casein- and gluten-free diet for 12 months. This group had significantly fewer autistic symptoms than the remaining children, who were not fed this diet (9).

Another well-controlled study of casein- and gluten-free diets focused on children with autism regardless of the level of protein by-products in their urine (10). Overall, the study found no significant differences in behavior between children on the elimination diet and children on regular diets, although individual parents reported behavioral improvements (10). A third well-controlled study reported no significant improvements in speech for 13 children who followed a gluten-free casein-free diet for 6 weeks (11). There were limitations in these studies, including relatively short time periods on the diet and/or small samples sizes.

Regardless, in both cases, the tested diets were casein- and gluten-free, so it is not clear whether it was the elimination of casein, gluten, or both that resulted in any improvements. A third study that did examine the effect of a gluten-free diet on the behavior of children with autism did not compare children on the elimination diet with children not on the diet (12). Therefore, even though there were improvements seen in the behavior of children on the diet, these may also have occurred over the 5 months of the study without the elimination diet

The current thinking is that there is at least some evidence showing that a gluten-free diet, when combined with a casein-free diet, can help improve the behavior of some children with autism. Although the casein-free diet combined with a gluten-free diet is popular, there is little evidence to support or refute this intervention and reviewers have determined that meaningful conclusions cannot be drawn from the existing literature (3, 4).
Is it harmful?

The major health concern for a child on a gluten-free diet is whether the child receives adequate nutrition. A recent report showed that the protein and nutrient intakes of children with autism on casein- and gluten-free diets were not different from those of children with autism on standard diets, but there was a trend towards lower calcium and copper intake in children on elimination diets (13). As a result, some researchers suggest that all children on elimination diets should be under the care of a nutritionist or physician (1).
Cost

A gluten-free diet can be expensive and difficult to follow, but as these diets become more common, the transition to the new diet becomes easier. Gluten-free versions of many favorite foods such as pasta, bread, and cookies are becoming more readily available in mainstream stores. Moreover, changes in the diet to replace breads, pastas, and other processed foods with vegetables, protein, and other whole foods are big steps toward a healthy, gluten-free diet.

Restaurants offering exclusively gluten-free meals are likely to be on the pricey side and are not common. Most restaurants will have gluten-free options on their menu (i.e. salads without croutons, fish or meat with vegetables served without bread or breading, etc.), although these choices may be limited. You may need to notify your server that you need gluten-free food choices, and they can help you choose between the available options or suggest changes to menu items.

Online sources for gluten-free cooking ingredients are also available, and some of these may be priced more affordably (see Resources ). Also, bulk or co-op buying may ease the cost of gluten-free items.
Resources

Healing Thresholds has partnered with The Gluten-Free Mall. They sell gluten-free prepackaged foods that may be convenient for some families.

The Food Allergy and Anaphylaxis Network provides many resources to help children live with a gluten-free diet: http://www.foodallergy.org/.

Several books that might be helpful in understanding the gluten-free diet approach are:

Diet Intervention and Autism: Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults : A Practical Guide for Parents by Marilyn Le Breton and Rosemary Kessick. 2001. Jessica Kingsley Publishers.

How to Eat Well Again on a Wheat, Gluten and Dairy Free Diet by F. Crosthwaite. 2006. Merton Books.

Special Diets for Special People: Understanding and Implementing a Gluten-Free and Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders by Lisa S Lewis 2005. Future Horizons.

The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet by P. Compart and D. Laake. 2006. Fair Winds Press.

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References

1. Murch, S. 2005. "Diet, Immunity, and Autistic Spectrum Disorders." J Pediatr. 146(5):582-584.
2. Reichelt, K.L., and A.M. Knivsberg. 2003. "Can the Pathophysiology of Autism be Explained by the Nature of the Discovered Urine Peptides?" Nutr.Neurosci. 6(1):19-28.
3. Christison, G.W., and K. Ivany. 2006. "Elimination Diets in Autism Spectrum Disorders: Any Wheat Amidst the Chaff?" J Dev Behav Pediatr. 27(2 Suppl):S162-S171.
4. Millward, C., et al. 2004. "Gluten- and Casein-Free Diets for Autistic Spectrum Disorder." Cochrane.Database.Syst.Rev. (2):CD003498.
5. Horvath K, P.J. 2002. "Autism and Gastrointestinal Symptoms." Curr Gastroenterol Rep. 4(3):251-258.
6. Elchaar, G.M., et al. 2006. "Efficacy and Safety of Naltrexone Use in Pediatric Patients with Autistic Disorder." Ann.Pharmacother. 40(6):1086-1095.
7. Campbell, D.B., et al. 2006. "A Genetic Variant that Disrupts MET Transcription is Associated with Autism." Proc Natl Acad Sci USA 103(45):16834-16839.
8. Millward, C., et al. 2008. "Gluten- and casein-free diets for autistic spectrum disorder. Cochrane Database Syst Rev 2008 April 16;(2):CD003498.
9. Knivsberg, A.M., et al. 2002. "A Randomised, Controlled Study of Dietary Intervention in Autistic Syndromes." Nutr.Neurosci. 5(4):251-261.
10. Elder, J., et al. 2006. "The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial." Journal of Autism and Developmental Disorders 36:413-420.
11. Seung H, Rogalski Y, Shankar M, Elder J. The gluten- and casein-free diet and autism: communication outcomes from a preliminary double-blind clinical trial. J Med Spch Lang Path 2007;15(4):337-5.
12. Whiteley P., et al. 1999. "A Gluten-Free Diet as an Intervention for Autism and Associated Spectrum Disorders: Preliminary Findings." Autism 3:45-65.
13. Cornish, E. 2002. "Gluten and Casein Free Diets in Autism: A Study of the Effects on Food Choice and Nutrition." J Hum.Nutr.Diet. 15(4):261-269.

Showing 1 results
Food Allergy and Autism Spectrum Disorders: Is There a Link?

Current Allergy and Asthma Reports, by Jyonouchi, H., published in 2009, summarized Sep 15, 2009

Probiotics may help to relieve gut problems in children with autism.

This review article describes proposed causes of gut problems in children with autism and describes the risks and benefits of treatments. There are a lot of data to support that children with autism have a chronic immune response in their gut. Many parents treat the gut problems with the gluten-free, casein-free (GFCF) diet even though there is not a lot of data to support the use of the diet. While there is some concern that the GFCF diet may not provide all needed vitamins to children, this concern is not backed by data. Treatment with probiotics makes sense, but it has not been proven to work in scientific studies of children with autism.

Syndrome of Allergy, Apraxia, and Malabsorption: Characterization of a Neurodevelopmental Phenotype that Responds to Omega 3 and Vitamin E Supplementation

Alternative Therapies in Health and Medicine, by Morris, CR, and Agin MC, published in 2009, summarized Sep 4, 2009

Combined vitamin E and omega 3 therapy may help a type of verbal apraxia (speech problems) that may be caused by food allergies and nutritional problems, and could affect children with autism.

Children with verbal apraxia have trouble saying words and may have severe speech problems. Many scientists have thought that verbal apraxia is a brain disorder. This study suggests that verbal apraxia may be a result of nutritional problems. This study tested 187 children with verbal apraxia. Many of the children also had autism. All children took 400-3,000 International Units (IU) of vitamin E daily. They also took 1-3 grams of polyunsaturated fats (including omega 3 fatty acids) per day. Almost all of the families reported that the children who received vitamin E and omega 3 therapy had better speech, imitation, coordination, and eye contact. The authors also described blood test results for 26 of the children. They reported low carnitine levels, high anti-gluten antibodies, low vitamin D levels, fat absorption problems, and other results. The authors described how nutrition and metabolism might be different in some children with autism. The authors said that two major problems with this study were that they asked parents to give their own opinion of whether or not the children were getting better, and they did not use placebo controls. Even so, they said the results are very promising.

Whey Watchers and Wheat Watchers: The Case against Gluten and Casein in Autism

Nutrition in Clinical Practice, by Goday, P., published in 2008, summarized Jun 12, 2009

The potential benefits of a gluten-free casein-free (GFCF) diet for children with autism may not be worth the risk of poor nutrition from the restricted diet.

This author states that current studies have not shown consistent benefits of a GFCF diet for many children with autism. However, many parents currently are enthusiastic about the GFCF diet. Nutritionists think that parents should be educated about following the diet. Parents need to make sure they provide children with good overall nutrition, whether on the GFCF diet or not.

Autistic Enterocolitis: Fact or Fiction?

Can J Gastroenterol, by Galiatsatos, P., Gologan A., and Lamoureux E., published in 2009, summarized May 14, 2009

Early studies suggest that there is a connection between gut problems and brain problems in people with autism.

Patients with autism may complain of pain, bloating, and/or diarrhea. These gut problems cannot be described simply as Crohn's disease. This case study describes two patients with autism and problems in the gut. Some people think that the gut problems are caused by an immune response to proteins in the diet. Autism patients and their families often report that special diets such as gluten-free and casein-free diets help with gut problems and symptoms of autism. The authors suggest that doctors refer patients with autism for a work-up and treatment of gut symptoms.

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Regional Autism Recovery Center Opens in West Virginia
Nov 20, 2009

Dr. Janet Lintala, a DAN! doctor, has seen results in children with autism who utilize her Autism Recovery Resource Center in West Virginia. Dr. Lintala opened the biomedically focused clinic in 2008, and is now receiving children from all over the region. Therapies included at the clinic are: gluten-free and casein-free diets, mild hyperbaric oxygen therapy, antifungal therapy, detoxification therapies, and other therapies to strengthen the immune system. In addition, there are lab facilities to test stool, urine, hair and blood. Dr. Lintala suggests that no one therapy is the answer for a child with autism, and says, "We encourage parents to explore options that will help their child, such as speech, occupational therapy, physical therapy, applied behavioral analysis, behavioral therapy and others." Dr. Lintala's goal is a "multi-specialty, state-of-the art regional center where families can find everything from a diagnosis to educational materials; . . . where a cure is offered."

Read original article.

Community Resources Help Teenager Who is "Differently-Abled"
Apr 6, 2009

A Florida teenager, diagnosed with pervasive developmental disorder-not otherwise specified (PDDNOS), has benefited from community resources developed by his parents and other parents of children with autism. These parents had fewer resources 12-18 years ago than parents do now, so they learned and taught each other about early intervention, speech therapy, occupational therapy, mainstreaming, and RDI. Currently, the number of resources in this Florida community is flourishing: Child Find , Exceptional Education and Student Services, and the Central Florida Autism Institute (CFAII), among others.

Read original article.

Grandparents Learn to Support Their Grandchildren with Autism
Nov 5, 2008

The Autism Society of Oregon (ASO) has formed the group - Grandparents of Autistic Individuals Need Support (GAINS). Many grandparents provide respite care for children with autism and want to learn more about the spectrum and therapies. Grandparents have expressed interest in learning more about individualized education plans (IEPs) and casein-free and gluten-free diets. Genevieve Athen, the executive director of the ASO, who founded GAINS hopes that "grandparents will continue to explore aspects of current research, sensory and therapy issues, potential careers, and problems relating to the transition to adulthood."

Read original article.

Gluten- and Casein-Free Diet Helped Child's Autism Symptoms
Oct 16, 2008

When the Kilpatricks of Texas learned their son had autism, they were determined that "The outcome is going to be the very best that we can make happen for this child." Along with behavioral therapy like ABA and physical therapy, they put their son on a gluten-free and casein-free diet supplemented with vitamins. Their son's speech improved quickly and his motor skills soon followed. The Kilpatricks and their doctor are convinced that early intervention played a large role in the success of the dietary intervention.

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Please comment on this autism topic.
Nutrition and Essential Fatty Acids May Help Verbal Apraxia and Autism
Dec 2, 2009 by Anonymous



Can nutrition help verbal skills in children with autism? A study reported the August 2009 issue of Alternative Therapies says yes, for some children. Combined vitamin E and omega 3 therapy may help a type of verbal apraxia (a type of speech problem) that may be linked to food allergies and nutritional problems.

Children with verbal apraxia have trouble pronouncing words and may have severe speech problems. Many scientists have thought that verbal apraxia is a brain disorder. This study suggests that verbal apraxia may also be related to metabolism differences and nutritional problems.

Metabolism is the process of making energy from food. Metabolism is a complex system of enzymes, proteins, fats, and carbohydrates that work together to digest food and turn it into energy that the body can use. People likely have a wide range of metabolic differences. Some of those differences can be quite large for some individuals. In this study, they suggest that some children with autism may have metabolism differences that affect how they process foods, and how their brain works.

What did the study show? This study tested 187 children with verbal apraxia, and many of them also had autism. All of the children took 400-3,000 International Units of vitamin E daily. They also took 1-3 grams of polyunsaturated fats (including omega 3 fatty acids) per day.

Almost all of the families (97%) reported improvements in speech, imitation, coordination, eye contact, and other skills with vitamin E and omega-3 therapy. There were few side effects reported during the length of the study.

The authors also described blood test results for nutritional information about 26 of the children. They reported low carnitine levels, high anti-gluten antibodies (suggesting a gluten allergy), low vitamin D levels, and fat absorption problems in most of the children they tested. They described how nutrition and metabolism might be different in some children with autism.

What do these results mean for children with verbal apraxia and autism? The results are exciting because 97% of the children showed improvements, and there were few side effects. Sounds perfect, doesn’t it? But it’s not quite as perfect as it sounds.

There are some major limitations of this study. First of all, the researchers asked parents to give their subjective opinion of improvements. The parents knew they were in a study. Although they were given specific improvements to look for, there is a possibility of bias in favor of reporting a good result.

Secondly, they did not use placebo controls. All of the parents and children knew they were getting the supplements. There is the possibility of the “placebo effect” which is when people taking placebo (“sugar pills”) report feeling better or actually show improvements. Many think it is the power of the mind/body connection that somehow influences how they feel or even how their body physically responds. There is scientific evidence for brain connections to the immune and endocrine systems to support these observations. It is possible that, in this study, the children and/or parents were hopeful that the supplements would work, and that influenced the outcome. There was a placebo effect observed in a recent study of citalopram and autism in children.

Third, the supplements may be helpful for only a subset of children with verbal apraxia. The researchers chose children with verbal apraxia who also had metabolism differences….

What is the bottom line for omega-3 and vitamin E from this study? In spite of the shortcomings of this study, the results are very promising. Children with verbal apraxia may benefit from vitamin E and omega-3 supplements, which may get their metabolism on a better track. And researchers will continue to explore the nutrition/metabolism link with brain function. Good nutrition is likely to be important for many brain functions, not just verbal apraxia.

Responding to gluten-free diet
Dec 2, 2009 by Anonymous

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Starting a gluten free diet
Oct 7, 2009 by Anonymous

I think that it is good to purchase a book describing a GF diet before embarking on the diet. You may also want to consult with a nutritionist who can advise you on how to modify your family’s current eating to make it GFCF. You can also look to find another mom in your community who is doing it. Many of my mom friends are GFCF. I think if you hang out with another mom who is making those choices, you will realize that it is not so hard.

I (and others) can answer your questions online, but you may have to see it in practice in order for it to seem less intimidating.

In my experience, there are three approaches. My approach is to give up processed food and shop the periphery of the grocery and get food from farmer’s market/local farms. I serve protein, vegetables, and fruit. I cook every night and serve simple tasty food. This is relatively easy and works for me.

Other moms are very impressive and do what I do plus they bake fabulous things using nut flours, etc. I have tea once a week with a good friend who bakes the most extraordinary GFCF muffins. She does this every morning for her family!

The third category is represented by Jenny McCarthy. Sure, she serves her kid fruit and stuff, but mostly she seems to rely upon GFCF processed foods that are available in Whole Foods, Trader Joe’s and specialty grocery stores.

You probably need to figure out where you fit in these three categories and then just give it a try.

Casein free and gluten free diet
May 17, 2009 by Anonymous

I have an autistic son age 5. He is very special in his own way and he is very special in my heart. For the last one year the doctor advised me to have a CFGF diets which is very hard for me to enforce. He is very intelligent that he will try to grab and find the bread, yogurt or other foods that he is prevented without my knowledge even I have tried so hard to hide it somewhere else. I have tried my best to stop all the casein and gluten products from him but not 100%. I just want to discuss, is the diet is very important for him?? What should I do to control the diet?

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Synonyms for gluten-free diet include: gluten, gluten free, gluten free diet, gluten-free