Does a gluten and casein free diet help autistic behaviors?
What are the positive and negative effects?
By Lisa Rockwell

“The gluten and casein free diet may have positive and negative effects on autistic children’s behaviors.” Many parents, who have autistic children often try implementing the gluten and casein free diet. To understand why parents implement this type of dietary intervention, one must first be familiar with what autism spectrum disorders and how it can affect a person’s ability to have a normal productive functioning life. Autism is a complex disorder that inhibits a person’s ability to communicate and behave socially. The Center for Desease and Prevention control estimates that 1 in 110 children suffer from some type of autism (“Popular Autism, 2010”). The many treatments for children with autism usually consist of developmental therapies, comprehensive educational programs and behavioral treatments. (“Autism Spectrum,”2006) Dietary interventions such as the gluten and casein free diet, have gained popularity with parents of autistic children. In fact director of the child study center at Yale University, Dr. Fred Volk mar states that nearly ninety percent of parents, who have autistic children often turn to dietary intervention. (Cox, 2010) The protocol for “Defeat Autism Now”, suggest that all children with autism should be on a gluten and casein free diet for at least three months. (“Autism,”1999). To date there is no known medical cure for autism spectrum disorders. So knowing this fact, many parents will use any plausible resource they can to help their live more productive lives. The following paragraphs will explain what gluten and casein are and the studies that have been done on the gluten and casein free diet and autistic behaviors. Explanation of Gluten and Casein Gluten is a mixture of plant proteins that can be found in wheat, rye and barley. Gluten can also be found in many food starches, semolina, couscous, malt, soy sauce, flavorings, artificial colors, hydrolyzed vegetable proteins and some vinegars. Casein is a protein that is found in milk and dairy products, such as cheese, butter, yogurt, whey and some types of margarine. Casein can also be added to non-dairy products like soy cheese and hot dogs in the form of caseinate (“GFCF Diet,”2010). Due to the many types of foods that contain gluten and casein, this type of elimination diet can be very expensive, tricky to implement and hard to follow. Although many parents of autistic children attempt it because, they believe that it may help their autistic child to cope better with behavior and social skills thus allowing them to function better have a fuller functioning life. Reasoning behind Implementing the Gluten and Casein free Diet The theory that is talked about among parents, nutritionist and physician’s concerning the gluten and casein free dietary intervention and autism, is that people with autism often suffer with gastrointestinal problems that can allow unusual amounts of digestive by products into their bodies, while they are digesting their food. This disorder is most often defined as the leaky gut syndrome. An article published in the Journal of Pediatrics stated in a 2006 study fifty autistic children were interviewed and forty two percent of them had gastrointestinal problems (Hasselbeck, 2009). Because people with autism are not able to, break down the proteins gluten and casein that are found in many of the foods that they consume (Albert, 2007). So when gluten and casein are taken out of an autistics child’s diet, they may show improvement in their behavior and daily living skills, due to them having less pain from gastrointestinal problems. Casein and gluten are broken down in the child’s intestines into several by products, including one called casomorphine. These by products are more common in the urine of children with autism than in children without autism. Acting like a drug these by products may affect the behaviors of autistic children by reducing their desire for social interaction, blocking pain messages and increasing confusion. (“Gluten Free,”2004) Doctors can order a urinary peptide test to determine if proteins are being digested properly. Negative Effects of Gluten and Casein free Diet One of the major health concerns of doctors for autistic children that are on a gluten and casein elimination diet, is that these children tend to have a lower amount of calcium and copper intake, than children who are on regular diets. Because of this concern, some researchers recommend to parents of children who are on the diet, to have their children under the supervision of a nutritionist or physician while on the gluten and casein free diet. Researchers have also recommended looking for calcium enriched soy milk, rice milk and orange juice for easy sources of calcium. (“Gluten Free,”2004) There are also medical test available that can determine if a child has a sensitivity or allergen to gluten, casein or other foods, before implementing the diet. (“GFCF,”2010) Positive Effects of the Gluten and Casein Free Diet Contrary to the nutritional concerns about the diet parents, researchers and doctors involved in the “Defeat Autism Now” movement claim they have witnessed mild to dramatic improvements in autistic children’s language and or behaviors, after removing gluten and casein from their diets.(“GFCF Diet,”2010) Parents have reported that their children have had improvements in many different areas, such as their children having better social behaviors and speech allowing them to have more positive interactions with their peers. Parents have also reported that their children had less diarrhea and loose stools, which goes along with the theory of the gluten and casein free diet being beneficial for many autistic children that have gastrointestinal problems. Initial Studies Conducted According to Albert Mark the first studies done on the effects of the gluten and casein free diet were flawed because researchers neglected to use control subjects, who continued to ingest gluten and casein. The use of control subjects would have allowed the researchers to compare the actual study participant’s behaviors with the control subjects. (Albert, 2007) In contrast the more recent studies have used control subjects allowing them to compare their participants with control subjects. The following paragraphs will describe two of the most recent studies that have been conducted on the effects of the gluten and casein free dietary intervention on autistic children. The researchers of these studies have used different numbers of participants and different methods of research studies to come up with their findings. The first study mentioned was a double blind study. Meaning no one in the study knew when the children consumed gluten, casein and or a placebo. The second study was done using an analog assessment, this is done by researchers collecting and measuring data. Most Recent Studies conducted on the Gluten and Casein Free Diet An eighteen week study designed by Dr. Susan Hyman, was done to look at the effects of eliminating gluten and casein from autistic children’s diets, was conducted at the university Of Rochester is said to be the most controlled study to date. The researchers made sure that the participants in the diet had adequate nutrients, as this is one of the main concerns for people who are on the gluten and casein free diet. They also controlled what type of behavioral treatments the participants received so the effects that were observed from the diet were in fact from the changes in the participant’s diet. Recent research conducted in the past did not use these factors. This study was headed by Dr. Susan Hyman. She originally enrolled twenty two children for the study. Children enrolled were between the ages of two and a half to five and a half years old. Prior to conducting the study each child was tested for vitamin d and iron deficiency, wheat, milk allergies and celiac desease. Fourteen of the twenty two children were able to move on with the study, and then throughout the study they were strictly monitored to make sure they were getting enough nutrients. After the children were on the diet for four weeks, casein and or gluten or a placebo was introduced to the children in randomized order. Snacks were given to the children once weekly that contained both or either twenty grams of wheat flour or twenty three grams of non-fat milk until each participant received each snack three times. The snacks were presented in randomized order, so that no one involved in the study including the child, child’s parents, research team and therapy staff would not know that the snacks contained gluten and or casein. The individual children’s parents, teachers and a research assistant for each child, filled out surveys on how the child’s behavior was the day before each child had their snack. The parents of the children also kept a log of the meals consumed sleep and bowel habits of their child. The social interactions and language of each child were measured by video tape during play interactions with a research assistant. When the study concluded there wasn’t any noticed changes in the children’s attention, activity, sleep or better bowel movements. Although the Rivito Real life rating scale showed there was a small increase, in social language and interest in interactions. However because of the small change shown and the small number of children in the study, the findings may have been due to chance (“Popular Autism,” 2010). Irvin Douglas performed an analog assessment study at the Murdock Center in North Carolina. The analog assessment study consisted of attention, demand, play, and self- restraint. The assessment was conducted on the gluten and casein free diet involving a participant who demonstrated severe behavioral problems, to the point that at age eleven he had to be placed in a residential treatment facility. Before the initial phases of the diet, researchers collected and measured data on the individual’s behaviors consisting of when and how frequently they occurred. The researchers performed all assessments on the individual in the same room equipped with a video camera. The sessions were then observed and documented by a trained professional who had no other involvement with the study. Another trained observer collected data during thirty two percent of the assessments. Then the data and measurements collected by both observers was calculated up by lowest and highest frequency and then multiplied by one hundred. The agreement for the targeted behavior between the observers was between ninety six and one hundred percent. A registered dietician developed the individual’s meals and watched over the staff that prepared meals and snacks for each phase of the diet, that included two gluten and casein free diet phases and a regular diet phase. The staff documented how much food the individual consumed and what foods were refused. The researchers took data of the individual’s behaviors during the first phase of the gluten and casein free diet which was in effect for about one year before the use of the analog assessment. Data for the first phase was collected in the final five days. The individual was on a regular diet phase for twelve days, with data being collected on the fifth and twelfth days. Researchers then continued on with the second phase of the gluten and casein free diet for fourteen days with the analog assessments being taken on the fifth day. When all three phases were completed data collected and measured showed to have no effect on the individual’s behaviors. According to Irvin Douglas this is the first analog assessment study to be conducted using a dietary intervention on an autistic individual with severe behaviors. (Irvin, 2006). Current status of Research on the effects of the Gluten and Casein Free Diet on Autism In conclusion, there have been different types of studies conducted to see if, “the gluten and casein free diet may have positive or negative effects on autistic children’s behaviors”. These studies have included group and individual studies. There has been research studies conducted that only removed gluten or casein from autistic children’s diets, although most of the studies conducted have been done by eliminating both casein and gluten. The researchers of these studies have used many different forms of research studies to come up with their findings. Although, to date there has not been any conclusive evidence that the diet helps to alleviate the behaviors that are seen in autistic children. Therefore scientists have concluded that currently there aren’t enough published studies to draw a meaningful conclusion (“Gluten Free,” 2004).Contrary to more in depth and concrete research being needed to see, if the gluten and casein free diet truly has any positive or negative effects on autistic children’s behaviors, parents of autistic children continue to implement this type of diet in hope that it may help their autistic children to live more productive lives. The Results conducted that have examined the gluten and casein free dietary intervention, for the improvements of symptoms related to autism are still preliminary due to the need for a larger number of participants and more rigorous control of compliance to the diet and standardized testing are necessary to enable more concrete conclusions to be drawn. (“Research Status,” 2009).

Reference List

Does a Gluten and Casein Free Diet Help Autism? What are the Positive and Negative Side Effects? Albert, M. (2007). The autism diet; Scientific American, 00368733, Vol. 296, Issue Retrieved; Aug 16, 2010. From Western Governors University database
Cox, L. (2010) Autism diet: No evidence they work or not say experts, report on stomach issues finds No evidence special diets help autism. Retrieved July 25, 2010, from http://abcnews.go.com/Health/AutismNews/experts-evidence-autism- diets work/story? Id=9474260[->0]
Hasselbeck, E. (2009). The g free diet: a gluten free survival guide, with a foreword by Peter Green, MD. (pp.190-192). 237 Park Avenue: New York, NY Center Street Hachette Book Group
Irvin, D.S. (2006). Using analog assessment effects of gluten and procedures; for determining the casein- free diet on rate of problem behaviors for an adolescent with autism. Behavioral Interventions[->1]; Nov2006, Vol. 21 Issue 4, p281-286, 6p, 1 Graph DOI 10.10002bin.205 Autism Can Be Aided By; Gluten-Free Casein-Free Diet. (1999). Retrieved Aug 3, 2010 from http://www.glutensolutions.com/autism.htm

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