John Libonati

Is the Media Fueling the Gluten free, Casein Free Autism Controversy?

by John Libonati on January 6th, 2010


The debate about autism and the effectiveness of the gluten-free, casein-free diet continues – this time due to irresponsible reporting of the mainstream news media who seem to have chosen sensationalism over objective journalism when covering an important medical paper on gastrointestinal disorders in autism.

This week, a panel of medical experts led by Timothy Buie, MD at Harvard Medical School published a consensus statement on the Evaluation, Diagnosis and Treatment of Gastrointestinal Disorders in Individuals with ASDs (Autism Spectrum Disorders) in the medical journal Pediatrics. You can find the full paper here.

The panel covered 23 topics in a document that is 20 pages in length, dealing with the diagnosis and care of individuals with autism spectrum disorders and gastrointestinal issues. The panel based its conclusions on available information which they agreed was limited and incomplete.

The Key Topic

“Individuals with autism spectrum disorders who present with gastrointestinal symptoms warrant a thorough evaluation, as would be undertaken for individuals without autism spectrum disorders who have the same symptoms or signs. Evidence based algorithms for the assessment of abdominal pain, constipation, chronic diarrhea, and gastroesophageal reflux disease (GERD) should be developed.”

Some of the other topics include recommendations for the banking of DNA samples, the complexity of diagnostic evaluation when ASD and gastrointestinal disorders present, the need for studies to determine the prevalence of intestinal permeability in neuropsychiatric manifestions of ASD, and the need for large studies to determine the effectiveness of the gluten-free, casein-free diet.

The panel did not recommend using the gluten-free, casein-free diet due to lack of sufficient double-blind studies on the subject. Only one study of 15 children who were placed on a gluten-free, casein-free diet for a period of 12 weeks was mentioned.

That study reported that although the diet did not seem to result in differences of “measures of severity of ASD symptoms, communication, social responsiveness and urinary peptide levels, the sample size was too small, there were concerns about compliance and possible dietary infractions by the study subjects (i.e. the children may have been ingesting gluten and/or casein) and lack of a direct observational outcome measure.

The panel therefore concluded there was not enough research to recommend the diet as a primary treatment. However, they went on to say “additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets.”

This would lead one to an altogether different conclusion than the blanket statement made by ABC news in their website piece below, which says the panel found “no evidence that special diets work.”

“New research was released today about children with autism, and it’s sparking a fresh round of intense debate. The report from a panel of experts finds no scientific proof that digestive problems are more common in children with autism and no evidence that special diets work. The research, published in the journal Pediatrics, has been met with controversy — many parents say that restrictive diets have helped their children by combating symptoms and behavior problems of autistic children.

Actress and activist Jenny McCarthy’s son was diagnosed with autism, and tonight she tells ABC News that she and many others have seen positive effects from wheat and dairy-free diets.

“We’re the ones seeing the real result,” she said. “And until doctors start listening to our anecdotal evidence, which is this is working, it’s going to take so many more years for these kids to get better. Every parent will tell you something different that helped their child, but all we know is that from this community we do see positive changes from this diet.”

News reports such as the ABC piece, incorrectly portray the conclusions of the panel concerning the gluten-free casein-free diet. They do not treat the panel’s statement fairly when they describe the findings, seeking to sensationalize and stir controversy rather than reporting the full context.

Another important panel statement about that small gluten-free casein-free study the ABC article (and other media outlets) failed to mention was the following, “Nevertheless, after being informed of the results, 9 parents wanted to continue the diet and reported positive subjective clinical changes while their child was on the GFCF diet. This echoes Ms. McCarthy’s statement that she and other parents are reporting positive results from dietary intervention.

As the panelists properly concluded, a sample size of 15 is indeed too small. Studies this small are referred to as pilot studies. They are useful in pointing toward areas that require further research. Also, compliance must be 100% during the study or the study findings are untrue. A 90% gluten-free/casein-free diet is NOT a gluten-free/casein-free diet. And anyone on the gluten-free diet, casein-free diet can tell you it takes at least 12 weeks to learn the diet to the point where you are 100% strict and receiving NO gluten or casein.

The FACT remains that gluten and casein CAN affect the mind in susceptible persons.

Documented and peer-reviewed medical studies and case reports have proven this.

I had the opportunity to review many studies linking neurological conditions to gluten while editing “Recognizing Celiac Disease,” a medical reference that has been endorsed by physicians and professors at Harvard, Columbia, U. Chicago, U. Pennsylvania, Jefferson and Temple medical schools.

Gluten and casein affect the mind either indirectly through malabsorption of nutrients, as seen in celiac disease or bovine beta casein enteropathy, or by direct effect, akin to a drug, allergy or other immune reaction.

It is common knowledge that chronic malabsorption leads to malnutrition, the lack of essential nutrients required for normal body functions. Malnutrition affects people depending on which nutrient is missing. Basically, if your brain does not obtain enough of the nutrients it needs, it malfunctions.

Sensitivities to substances vary among people based on genetic predisposition. This explains why one person can moderate his drinking and another becomes an alcoholic, why one person can eat peanuts and another is highly allergic, and why one person can eat gluten with no ill effect and another experiences an autoimmune reaction, intestinal inflammation and damage to their intestinal lining.

Autism and Treatments Incorporating Dietary Intervention Must Be Investigated

The panel recognizes the possibility of a link between gastrointestinal health, sensitivities co-morbid conditions and autism when they wrote,

“Additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets. Standardized definitions of adverse reactions to foods would be helpful in discussions with patients/providers. These definitions also should be used in studies of adverse food reactions in individuals with ASDs.”

The panel statement specifically mentions allergic reactions, celiac disease, and other immune reactions.

In their conclusion, they stated,

“Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a subgroup of individuals who may respond to such diets. Further research is expected to clarify the role of metabolic disorders, allergic/toxic reactions, immune dysregulation, and inflammatory changes in the etiology of gastrointestinal disturbances in individuals with ADSs. Whether unique genetic, metabolic or physiologic conditions exist and are specific to ASDs remains to be determined.”

One of the most important sentences was the following,

“Education of caregivers and health care providers is necessary to impart knowledge of how to recognize typical and atypical signs and symptoms of gastrointestinal disorders in individuals with ASDs.”

This is vitally important for the following reason…

Patients have been misdiagnosed with autism, when they were actually suffering from celiac disease. This has been documented in medical literature. The question is…how many have been misdiagnosed?

The panel touches on this question when they state, “for patients with ASDs, a detailed history should be obtained to identify potential associations between allergen exposure and gastrointestinal and/or behavioral symptoms.” They specifically list celiac disease as a potential co-morbid condition.

Celiac disease, an immune mediated reaction to wheat, barley, rye and oats, is diagnosed less than 5% of the time because doctors do not know what to look for, or what they are seeing when it presents itself atypically in patients. Better education of physicians has been called for by the NIH since 2004.

For those who would like to see actual cases linking autism, gluten and celiac disease, here is an article and two videos that show the effects and recoveries that are possible.

The article describes a five year old boy misdiagnosed with autism by an autism specialty clinic, when he actually had celiac disease. He recovered when the correct celiac disease diagnosis was made, gluten was removed from his diet and his nutrient deficiencies were corrected.

The videos document another boy who was regressing and diagnosed with a seizure disorder. This boy recovered when he was correctly diagnosed with celiac disease and gluten was removed from his diet.

The Media Should Report the Truth, Not Controversy Based on Half-Truths

The “news” media, by choosing to publish only the most sensational items rather than objectively covering the news in its entirety, spread ignorance, create controversy and sow discontent.

Taking words out of context and focusing on the most sensational hurts the public, especially those whose lives and health are impacted by the “conventional un-wisdom” this misinformation creates.

The United States is experiencing epidemic numbers of children who are being lost to ASD and resigned to medications with horrible and sometimes lifelong side effects. We do not need controversy in the guise of news coverage. We need the truth.

The panel statement was one step toward the truth. The media’s coverage was two steps back.

——————–
“Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached at john.libonati@glutenfreeworks.com.”


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