Autism: Gluten Free?
For a success story involving autism and the GFCF diet, read Jake’s Story.
By Dr. Selena Eon, ND
The prevalence of autistic spectrum disorders appears to be increasing, either through increased incidence or through better diagnosis.
Currently, there is no known cause, and no known cure.
Without a known cure, desperate families are turning to a variety of potential treatments discovered through the internet, television and other parents.
These new therapies may work, however, at this point in time there is no scientific evidence that ANY treatment works for autism.
Without known treatments, families are left with a choice: to either do nothing, or to try alternative treatments. Many families make the choice to try a variety of potential treatments rather than do nothing. These treatments can become expensive.
Frequently, parents need to do something to help even if there’s no scientific data to support the efficacy of the chosen treatment. If your child has autism now, waiting for scientific research validating any treatment could take years, or even decades—while your child goes untreated into adulthood. I certainly understand why a parent would choose to treat rather than to sit by and do nothing! Yet, it is extraordinarily important to ensure that all treatments are not harmful and in the long-term best interest of the affected child and their family.
The GFCF diet is the most popular treatment for autism. The GFCF diet is completely gluten-free and casein-free. Therefore, no wheat, spelt, kamut, triticale, rye, barley, semolina or dairy! As gluten and dairy are frequently found in prepared foods, this diet requires careful attention to detail and should only be implemented when appropriate and with adequate foresight.
Interest towards a GFCF diet as a treatment for autism grew after a study by Cade. 87% of the children in the study had high levels of IgG to gliadin, and that 30% of the children had high levels of antibodies to casein or gluten. An astonishing 81% of the children were considered improved by parent and teacher reports after 3 months on the diet. Unfortunately, this diet study lacked a control group of children who were not following the GFCF diet.
Therefore, the results have been widely discounted by scientists and physicians. I was particularly interested in how the number of children with antibodies to gluten was very similar to those who were considered improved at the end of the trial, leading me to believe that the children who demonstrated improvement on the GFCF diet were likely gluten intolerant or had celiac disease. More on this subject later!
It is incredibly important for scientists to continue investigating the effects of this diet systematically, in well-controlled trials. At the present time, there is no strong research that supports the use of a GFCF diet as a treatment for autism, despite the diet’s position as one of the most popular treatments for autism.
It is hypothesized that some autistic symptoms may be the result of opoid peptides formed in the intestine from incomplete digestion of foods containing gluten and casein. In a person with “leaky gut”—increased gut digestion and gut permeability, the gluten and casein that should be completely digested are not, and these larger molecules are able to pass directly into the bloodstream. In a healthy gut, proteins are digested fully and absorbed as individual peptides (the building blocks of proteins) rather than as complete proteins.
After the gluten/casein enter the bloodstream, they may be capable of crossing the blood-brain barrier—a protective group of cells that selectively allow molecules to enter the central nervous system. The gluten/casein proteins have a similar appearance and chemical makeup to opoids, and may be capable of affecting the internal opiate system and transmission between nerve cells.
Much of this process is not fully understood, but it is possible that opoidlike peptides affect the central nervous system in such a way that increases stereotypical behaviors, ritualistic behaviors, perseveration, hyperactivity, speech/language delays and other oddities frequently seen in autism.
The leaky-gut opoid theory above depends upon the presence of a leaky gut, and there is evidence that points towards this being the case in many causes of autism. It is common for autistic children to experience GI symptoms that could be a result of leaky gut, including diarrhea, constipation, abdominal pain and reflux. A number of studies have reported significant dysfunction of the gastrointestinal system in autistic children.
As a naturopathic physician, I firmly believe in treating the whole person rather than a “condition” or symptoms. I often spend time thinking about a patient and trying to elicit what is the root cause of their health concerns. The success of the GFCF diet in many cases of autism leads me to wonder if gluten and dairy intolerance are more common in autistic populations.
I don’t believe removing foods from a person’s diet forever is appropriate without good reason to back up the suspicion that the food is problematic. But, I am aware of the tremendous impact that removing problem foods can have on health! It is important to carefully consider each case as an individual before making the decision to remove foods from an autistic child’s diet, and also, to not neglect removing additional foods, as appropriate.
Overt celiac disease presents in at least 1:133 people and may be found in higher rates within the autistic population. It is advisable to test for celiac disease through bloodwork before beginning a gluten-free diet for any reason, including autism treatment. This is because once the person eliminates gluten from their diet, future blood tests are likely to be negative, even if the person does have celiac disease.
Recommended tests to include are: Anti-gliadin antibodies (AGA) both IgA and IgG, Anti-endomysial antibodies (EMA) – IgA, Anti-tissue transglutaminase antibodies (tTG) – IgA andTotal IgA levels.
Patients who test positive in a full celiac panel can then be monitored for compliance with the diet. If they follow the diet, subsequent results (titers) should be lower after a period of time; if they fall off the diet secretly or accidentally, the celiac panel can provide evidence of the lapse. This is particularly helpful if dealing with a child who may sneak unacceptable foods without the family being aware or in situations in which the family may not be following the diet accurately.
But if the patient goes gluten-free without the testing, there will be no pre-diet baseline test results, and no way to objectively assess compliance. Also, as celiac disease is hereditary, a positive test indicates a higher level of suspicion in other family members. Celiac can present with a wide variety of symptoms, some of which are not gastrointestinal, therefore being aware that celiac disease runs in a particular family can be very helpful.
It is important to know that even if a full celiac panel comes back negative, this does not mean the child is not gluten intolerant. Additional research is sorely needed in the topic of gluten intolerance, but gluten intolerance appears to present on a spectrum, much like autism. At one end are individuals who test positive for celiac—the most severe of gluten intolerance. The rest of the spectrum is made up of the many individuals who should not consume gluten who do not have celiac disease.
This condition is frequently termed “non-celiac gluten intolerance”. Gluten intolerance is linked to a variety of conditions including infertility, poor quality dental enamel, neurological disorders, skin conditions, diabetes and a variety of autoimmune disorders. A person need not have gastrointestinal symptoms to be gluten intolerant.
At present, testing for gluten intolerance is not scientifically validated, although Enterolab has a stool test that appears to be fairly accurate in detecting cases of non-celiac gluten intolerance. Other labs also offer similar tests that can be helpful. Genetic testing for celiac disease is also available. A positive genetic test only shows if a person has the most common genetic markers found in celiac disease/gluten intolerance.
It appears possible to test positive on a genetic test for celiac disease and never develop celiac or overt gluten intolerance. Many labs offer blood and stool testing for dairy intolerance as well, I recommend including this testing along with testing for gluten intolerance. The testing topic is very complex and much is still unknown about the gluten intolerance- celiac disease spectrum. Most families will be best served working with a knowledgeable physician like myself throughout the testing process to avoid harm from misinterpreted test results.
I suspect that the children who are helped the most by a GFCF diet are those children who have celiac disease or gluten intolerance and reactivity to dairy products. A GFCF diet may yet be proven to help a wider group the autistic population and I strongly support further research. For now, it seems reasonable to begin with a test for celiac disease.
If this test is negative, expand testing to either stool antigens to gluten and dairy, and consider genetic testing. Individuals who test positive on any of these lab tests are probably more likely to be helped by a GFCF diet and should consider it more strongly than those who do not test positive.
Before implementing the diet, it is incredibly important to consider several important factors. Adequate preparation before starting a gluten-free, casein-free diet can make the difference between success and failure!
1. Does the family have the resources to purchase foods in a gluten-free casein-free diet that are often more expensive, and are these foods readily available? If not, is a family member willing and ready to produce home-made GFCF foods and are adequate supplies available?
2. Is there a commitment by at least one family member to keep accurate daily records of food intake and behavioral change to assess the outcome of this treatment?
3. Are there clinicians such as naturopathic physicians, pediatricians and nutritionists in the family’s geographical area who might assist in systematically assessing the gluten-free casein-free diet to ensure nutritional adequacy?
4. Does the child have a limited food repertoire that, if further limited by the gluten-free casein-free diet, might result in a dangerously compromised nutrition status?
Many children with autism have restricted food repertoires and may not consume a nutritionally adequate when food choices are restricted further. I strongly recommend working with a physician like me– someone who has a strong background in nutrition, or with a nutritionist who understand the GFCF diet.
There are many support groups available for families in need. Gradual transition to the GFCF diet, and “revising” old favorites to follow the diet may helpful. It can be hard to implement the diet when there are family members who are not following the GFCF diet. Parents may need special locks for cabinets and refrigerators, carefully watch their autistic child to ensure that they are not sneaking unacceptable foods and working closely with school personnel to ensure compliance at school.
The preparation aspect is easier if the whole family is eating GFCF otherwise, the family may need to prepare two individual meals at each mealtime! Shopping takes a considerable extra effort at first, but as the main food shopper becomes adept at reading labels, will become less of an issue.
Overall, I am encouraged by the reports of autistic children who have reported improvement on the GFCF diet. It seems reasonable to continue researching this area to determine if those children who respond favorably indeed test positive for celiac, gluten intolerance and dairy intolerance. At the same time, we may find that the children who do not respond favorably are indeed not intolerant to gluten and dairy!
To avoid potential harm from unnecessary dietary restrictions, I strongly urge all parents considering the GFCF diet for their child to have laboratory testing for celiac disease and meet with a qualified health care professional before adopting the GFCF diet long-term.
Families need support to successfully implement the diet and I believe planning and education are key to long term success. This allows families to being the diet with the best possible circumstances, and will likely lead to best possible outcomes for their child.
Eating Gluten-Free On A Budget, Parts 1, 2 and 3
Autism: 10 Strategies for Implementing Diet Changes
If you have any questions about celiac disease, you are welcome to ask them in the comments section and they will be addressed in future articles.
Dr. Selena Eon practices in Bellevue, WA and you may contact her at
(206) 228-9537 or visit www.drselenaeon.com