Autism and the Gluten-Free,Casein-Free Diet

By Nick Malcuit


            Rates of autism have increased to an alarming 1 in 88 children representing a 78% increase over the past decade. However, research has not even closely paralleled that growth. In fact funding for autism represents .55% of the total research budget of the National Institute for Health Funds Allocation (AutismSpeaks, 2012). While there is no medical detection or cure for autism, there is encouragement. Families, scientists and physicians alike have looked at the relationship between diet and autism. While the science has been limited, the family experience has been extraordinary. Increased numbers of children are ameliorating behaviors and communication skills as the result of implementing a gluten-free, casein-free diet. While much more research is needed, benefits have been documented. Families now have additional resources and support to improve the quality and condition of life for children with autism.


Overview of Autism – Definition and Prevalence

According to the Individuals with Disabilities Educational Act, autism is defined as a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3 that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.

Further explained by Hardman, Drew & Egan (2010), definitional statements only provide a partial picture of autism. Although autism implies a seriously reduced level of functioning, a broad range of capacity, from severe to mild impairments occurs. This has led to Autism Spectrum Disorders which includes a range of functioning in the multiple skill areas of communication and language, intellectual and social interaction (p, 284).  The DSM-V officially revised the diagnosis in May of 2013.

Personally speaking, my two sons have shown me the many characteristics and inconsistencies of spectrum disorders over my ten years living and interacting with them. They were both diagnosed with PDD-NOS at different ages. Lisa Lewis, in her book “Special Diets for Special Kids” (1998), states the term PDD-NOS has come to be the most commonly used by  doctors who cannot bring themselves to use the word autism when speaking to vulnerable parents (p, 1). Nevertheless, over the past several years I have observed virtually no communication lead to nonverbal pointing; one word commands lead to a full range of emotions and verbal communication of those emotions with multiple word sentences. Furthermore, the one constant I have seen is the complexity of spectrum disorders. It is remarkable how ten different children with the same diagnosis are all different, all with various characteristics under the autistic umbrella. What it really points to, in my opinion, is how much we don’t know about autism and its causes. In looking at the definitions and characteristics of autism it is also important to look at the prevalence of autism and the increase in diagnosed cases.

AutismSpeaks, on its website, posts the latest research findings from the CDC. The Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome combined. They go on to say, the new numbers, based on a 2008 snapshot of 14 monitoring sites, represent a 78 percent increase in autism over the previous five years. They represent a ten-fold (1,000 percent) increase in reported prevalence over the last four decades (AutismSpeaks, 2012). The alarming increase in autism should be paralleled by an equally urgent increase in research. While that hasn’t been the case, autism has gotten more media exposure and more information has become available. This is illustrated for example in the journal, “Archives of General Psychology”. While it is pointed out that there are three articles on autism in the December issue, it further states that ten years ago there were three articles on autism for the entire year. And as further pointed out by Professor Roy Richard Grinker, who is a recognized authority on autism and whose own daughter was diagnosed with the disorder in 1994, “ Back then, there was little awareness or understanding of autism in the United States. That has changed, he says. "I don't know that the treatments for autism today are that much different than the treatments for autism back in 1994 or 1995, except for this: Society understands autism. Society gets it. Autism is no longer invisible," said Grinker (Smith, .2012). While a discussion of the causes of autism could explain why certain treatments seem to help, the fact is the exact cause is unknown. AutismSpeaks asserts, first and foremost, we now know that there is no one cause of autism just as there is no one type of autism. Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism themselves. However, most cases of autism appear to be caused by a combination of autism risk genes and environmental factors seen to influence early brain development (2012).

Gluten-Free, Casein-Free Diet

Dr. Jennifer Elder explains the origin of the gluten-free, casein-free diet as she discusses the work of Dr. J.R. Cade and his studies on schizophrenia and autistic children. The studies and research derive from theories about autism and associated GI tract problems such as celiac disease and chronic diarrhea and constipation. Observations from parents over time showed that children with autism spectrum disorders had problems and issues with their eating, digestion and elimination habits. They observed how gluten-containing grains and milk negatively affected their digestive systems (Elder, 2008). One theory (opioid excess theory) is that peptides derived from foods containing gluten or casein, mimics opioid chemicals, slowing down digestion even more, and cause a lack of alertness and an increase in physical sluggishness. In addition, they produce a variety of changes in brain chemistry. Some people seem to have a literal addiction to these opioids as illustrated by many autistic children who refuse all foods but dairy and gluten-containing starches (Waltz, 1999, pp. 224-25). This was conveyed to our family personally by Dr. Kenneth Bock of the Rhinebeck Health Center. We sought help from Dr. Bock in 2003 for our two boys. Dr. Bock is known to be integrative and progressive in his treatment of autism spectrum disorders. He stated that in the case of our boys, especially our youngest Louis, who only wanted to eat French fries and breaded chicken nuggets, the food served as a drug so to speak. He explained how the feelings Louis’ brain experiences when eating gluten was similar to what a substance abuser achieved when getting “high”. This led to his cravings and the behavior changes we would get from Louis after eating these foods. Dr. Bock is of the belief that a genetic component coupled with environmental factors has led to an autism epidemic. He further explains “GI abnormalities in autistic children are often the result of an atypical autoimmune condition (sometimes brought on by the live measles component of the MMR vaccine) affecting the gut-brain connection, in which the immune system attacks the body as if it was a foreign invader”… “Eliminating gluten and casein, and in some situations yeast, sugar and food allergens can help tremendously” (2005).

Limited research on the effects of the gluten-free, casein-free diet has been done in several countries over the past years. However, as pointed out by Dr.  Elder, there is a lack of scientific rigor and paucity of published reports citing only 6 studies, as of 2006 (Elder, 2008).  This lack of data and research is rather hard to fathom considering the astonishing growth in the rates of autism and the lack of medical treatments for this disorder. As one emotional parent argued, “I understand the importance of research. However, if I wait for science to provide the data it will be too late. My child will be grown” (Elder, 2008). And this is the problem. Families are getting information from our global community and are so desperate that they will try anything. If they believe it will help their child, they will try it even though it is not a “proven” scientific fact.

There are a few core studies that offer encouragement for families based on the conclusions reached during the research. The work of Paul Whiteley and Paul Shattock of the UK is noted here as they organized a study considered as a pilot program in 1999. Also proponents of the opioid-excess theory, the aim of this pilot study was to provide a more substantial investigation into the short term effects of a gluten-free diet with children with autism and associated spectrum disorders. There were 31 children chosen to take part in the study, however 22 finished the regimen. Results were reported using a battery of parental and teacher interview/questionnaire sessions, observation reports, and psychometric tests. Results suggested that participants on a gluten-free diet showed an improvement on a number of behavioral measures. The researchers point out that in reviewing results, it’s important to keep methodological and ethical issues with this type of research in mind. While parents were not blind to the intervention, there may have been a bias in interpretation. Regardless, this study was an important project in showing the positive effects of the diet (Whiteley, et al, 1999).

Shattock and Whiteley followed up their study with additional research to uncover a universal explanation for the biological basis of dietary effectiveness despite individual associations with various cases of autism. Impaired intestinal barrier function is a common denominator and represents a promising area for investigation (Whiteley et al, 1999). They looked at three modes of action used alone and in combination to explain the effects of a gluten- and casein-free diet on autism spectrum conditions and focused on direct or co-morbid consequence of: 1) gluten sensitivity or celiac disease, 2) food allergy and/or atopic disease, and 3) underlying hyper-permeability of the gastrointestinal tract (leaky gut) and subsequent passage of biologically-active peptide and related species into the central nervous system. (Whiteley, Shattock, et al, 2010). Looking at the underlying pathology, the question therefore is whether removal of dietary gluten and casein may be indicative of a more complex problem in carbohydrate and protein digestion and metabolism. In summary, autism spectrum conditions form a heterogeneous group and are known to place affected persons at increased risk of various co-morbidities alongside core symptoms (Whitely, Shattock, et al, 2010).  Research is showing a relationship between GI tract disorders and ASD that warrants further study.

Another important, comprehensive research project was a Norwegian study done by Knivsberg and colleagues in 2002. This was a randomized, single-blind design with 20 children. In their own words, the goal of the present study was to evaluate the effects of a gluten-free and casein-free diet for children with autism and urinary peptide abnormalities. Twenty children were matched pair-wise according to age, cognitive level, and severity of autistic behavior. One child in each of the 10 pairs was then randomly assigned to the diet group. The other 10 children formed the control group, a non-diet group. The participants’ behavior was registered before and after the experimental period of 1 year. The registrations covered communicative aspects, reciprocal social interactions, emotions, learning, play behavior, and movements (Knivsberg, et al, 2002). This study increased the timeframe used in the Whiteley/Shattock study to one year and the results documented were significant reduction of autistic behavior for participants in the diet group, but not for those in the control group. Furthermore, a demonstrated increase of communicative skills in the children within the diet group was recorded.

These studies are limited and provide preliminary evidence. However, there is much to learn and many questions to answer. These were the conclusions of Dr. J. Elder after her comprehensive evaluation of research on the gluten-free, casein-free diets. She further asserts, larger sample populations, longer testing periods and improving parental reporting methods will add to the validity of the data as research moves forward (Elder, 2008).

These studies and research projects represent the quantitative data that has been accumulated over the years and some of the associated physical co-morbidities with ASD such as GI problems, celiac disease and/or food allergies. Further research will address many of these issues and discover new information and resources for families in dealing with diet and autism disorders. However, there is numerous qualitative data based on personal experiences that families have had and successes with the GFCF diet.

Many individuals have used their own experience to support and offer information to others by way of journal articles, books, blogs and social media. Perhaps one of the most encouraging stories led to the book by Karyn Seroussi, “Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery”. Ms. Seroussi is from a large group of parents and others who believe her son Miles’ autism resulted from the MMR vaccines and immune system deficiencies. Ms. Seroussi did her own initial research and after reading a book where a mother stated her son’s autism behaviors were due to a severe milk allergy, she began to take away certain foods and see what resulted from those efforts. What she found was that her son, who was nonverbal and wouldn’t make eye contact, began to change after just 48 hours of being gluten free. The first changes were improvement in balance and coordination. As time went on and both gluten and casein were removed and subsequently, her son made eye contact, his physical symptoms improved and he began to speak. Ms. Seroussi also cites the research studies mentioned above and was adhered to the theory that “a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists had discovered compounds containing opiates, a class of substances including opium and heroin – in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested”  (Seroussi, 2002). Ms. Seroussi further writes that “Several researchers are now studying the abnormal presence of peptides in the urine of autistic children. My hope is that routine diagnostic tests will be developed to identify children with autism at a young age, and to treat them appropriately. When autism is recognized as a treatable medical disorder, the gluten and dairy-free diet and other biomedical interventions will move from the realm of alternative medicine into the mainstream”. Ms. Seroussi has developed a website with the previously mentioned Lisa Lewis, who implemented the gluten-free, casein-free diet and had success in the treatment of her son Samuel who was diagnosed with PDD-NOS. The site is comprehensive and has a wealth of information, research information and actually sells gluten-free, casein-free food bars to assist with the diet.

Personally speaking, our son Louis has improved his behavior and communication skills when he adheres to a gluten-free diet. He has numerous food allergies so his foods are limited but he often asks for French fries and breaded chicken. This concept is coming into the mainstream and not considered alternative any longer. This was evident when we were in Disney World in 2012, as they made it a point to cater to the gluten-free, casein-free diet needs of guests. Each hotel or restaurant sent the chef to the table prior to ordering to discuss our options and went out of their way to provide a variety of foods. One particular restaurant in the Animal Kingdom had an entire gluten-free, casein-free section set up in their buffet. While this may be considered progressive, it is nevertheless becoming more common and accommodating to those with dietary needs. My wife has also been to lectures given by Karyn Seroussi and believes strongly in her writings and theories. She relates it to her own experiences as she has told me the story of how her older son Nicholas basically shut down within weeks of his vaccines similar to Ms. Seroussi’s son. Nicholas, while dealing with other medical issues, now functions in a higher capacity, however is in special education classes at a local senior high school. His mother is convinced of the direct relationship between his vaccines and his autism.


            Based on my own experiences and investigation of the research, I believe autism like many other disorders has a pre-conceived genetic component and is triggered by environmental factors. If you look at the scientific research, books, journals and information obtained globally through the internet and social media on the subject, it is hard to refute at least a connection between the gluten and casein-free diets and its effects on children who have autism. As stated in the conclusions of researchers, it warrants further detailed research at a minimum. The data on the opioid-effect theory has much validity and in addition to the documentation, I have witnessed it with my own son. Furthermore, I have also seen the GI tract issues and food allergy connection. Diet plays a key role in our lives and overall health and is a necessary treatment for many conditions. If we treat diabetes with a sugar-free diet, hypertension with low-sodium diets, and heart disease with low-fat diets, is it really hard to conceive of the positive effects experienced by autistic children when eating a gluten-free, casein-free diet?





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© Nick Malcuit 9/2013