Gluten Affect Autism
FACT or FAD?
Effect of Gluten and Casein-Free Diet on Autism
Statistics say that 3-6 out of 1,000 Americans or 1 in every 110 Americans will develop autism, which is more than 90% heritable. There are pharmacological therapies for ASD but up to 27% of parents are drawn to the promise and observed effects of the gluten-free, casein-free diet in reducing ASD symptoms in their children. Naturopathy doctors advocate its use as one of the complementary and alternative medicines or CAM. Autistic persons are gluten and casein-sensitive. These substances produce morphine-line effects, which translate into the symptoms of autism. The rising popularity of the diet motivated an increase in research. Recent studies say there is limited scientific evidence on its effectiveness, has mixed results, helps some autistic persons but not all, misses out on essential nutrients, difficult and expensive to prepare and is outright considered a mere fad treatment.
Autism or classical autism is the most severe form of Autism Spectrum Disorder or ASD (National Institute of Neurological Disorders and Stroke, 2010). ASD is a group of complex neurological development disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Milder forms in this spectrum are Asperger Syndrome, Rett syndrome, and unspecified childhood disintegrative disorder and pervasive developmental disorder. The Spectrum occurs in all ethnic and socioeconomic classes and all age groups. Statistics say that 3-6 out of every 1,000 will develop ASD, four times more in males than females (National Institute of Neurological Disorders and Stroke).
Naturopathic physicians are those who uphold and practice beliefs based on vitalism (Atwood, 2003). Vitalism is a pre-20th century belief that biological processes clash against the physical and chemical principles of modern medicine. Naturopaths believe in the healing power of nature in treating disease. They treat its cause, not just suppress symptoms, which modern medicine does. They perform holistic healing by boosting the immune system with herbs and homeopathic concoctions. They assume knowledge in disease prevention, which is unknown or opposed to medical doctors, public health practitioners, nutritionists and allied health experts. Part of naturopathic claim consists of the actions of toxins from synthetic medicines, allergies, imbalances of the Qi, and natural food substances, such as gluten and casein (Atwood). Naturopaths point to gluten and casein as behind ASD. Gluten is a natural protein found in wheat, rye and barley, which gives them spongy texture (Geraghty & Marschner, 2008). Casein is another natural protein found in dairy products. Casein forms a gel during digestion, which accounts for the long-lasting release of nutrients in the body. The belief is that autistic children are sensitive to these food substances, which result in intestinal permeability or a “leaky gut.” A leaky gut is believed to absorb gluten and casein before they are completely broken down. They produce large peptides, which pass out of the intestines and into the blood stream. The peptides behave as opiates in the body. Autistic children exhibit the opiate effect in their eye contact, social interactions and behavior (Geraghty & Marschner).
Review of Literature
Rising Incidence, Cause and Present Medical Approaches
Researchers said that the broadening of diagnostic criteria and environmental factors explained the 8-fold increase of autism cases in the last decade (DeNoon, 2009). The increase was most prominent in California. Parents are also much more aware about the illness than a decade or 16 years ago. A lot of the autism funding has been devoted to genetic studies and the environmental factors, which make certain persons genetically susceptible. Environmental changes include medications, reproductive technology and everyday household substances like soaps, shampoos and toothpaste. Experts expressed concern over the difficulty of testing for thousands of environmental exposures, some of which have gone (DeNoon).
Autism is more than 90% heritable than any other behaviorally defined neuro-psychiatric disorders (Brkanac et al., 2008 p599). Fast-advancing genotomic technologies and large international collaborations have yielded this knowledge and understanding on the molecular genetic causes of autism. Medications are under experiment on two single-gene disorders, fragile X syndrome and Rett syndrome, believed to contain many aspects of the autistic phenotype (Bkanac et al. pp 600-603).
Present pharmacological treatment approaches to autism draw from those, which are effective in addressing behavioral symptoms of other disorders (Bkanac et al., 2008 p 604). Some drugs can reduce symptoms of aggression, irritability and hyperactivity. The National Institute for Mental Health and Research Units on Pediatric Psychopharmacology evaluated selected agents in the management of behavior among autistic children. The evaluation led to the selection of isperidone as the first to be approved by the U.S. FDA in the management of irritability in autism. The use of methylphenidate for both autism and ADHD symptoms was also confirmed (Bkanac et al. pp 605-607).
Naturopathic Approach: Glute-and-Casein-Free Diet
Naturopathic doctors treat earaches, allergies and medical problems using different complementary therapies to strengthen the body’s natural life force (Atwood, 2003). They look for the underlying cause of a disease or disorder instead of focusing on symptoms. Their treatments include enemas and fasting for “detoxification,” hydrotherapy, homeopathy, acupuncture, chiropractic manipulation, aromatherapy, herbs, rigid dietary regimens and other “natural remedies.” They also sell preparations suited to these treatments to their clients at a profit (Atwood).
A licensed naturopathic physician or ND has a four-year, graduate-level naturopathic medical school education, consisting of the same basic sciences learned by a medical doctor or MD (Atwood, 2003). An ND’s theory and practice are, however, not based on the same basic knowledge of an MD and which is widely accepted by the scientific community. The scope and quality of an ND’s education does not prepare him for adequate diagnoses and appropriate treatments. MDs say that naturopathy should not replace conventional methods of treatment. They expect NDs to act responsibly in the awareness that they do not possess either the medical training or required scientific skepticism for the task. Instead, NDs present themselves as primary care physicians and yet have only a small fraction of MDs’ training in primary care. NDs use homeopathy and other questionable and ineffective methods to deal with medical conditions (Atwood).
Diet Treats Actress’ Autistic Son
Actress and book author Jenny McCarthy related her ordeal and experience with her young son, autism and the gluten-and-casein-free diet (Roberts et al., 2007). A first doctor diagnosed her son Evan with epilepsy and a second doctor said he has autism. The revelation also greatly affected her marriage. In a desperate search, she found a controversial solution to her son’s condition in the internet in the form of a gluten-free and casein-free diet. She learned that many parents like her already believe that the protein content of wheat and dairy damage their children’s brains. A pediatrician who specializes in treating autistic children, Dr. Jerry Katzinel, said that the two substances act like morphine to autistic children. They make them lethargic or giddy after eating foods with these substances. Jenny immediately put her son on the diet and she was amazed by the results. Evan began to speak and communicate and have eye contact. After two and half years of combination therapy, Evan can now engage in full conversation. His therapy consisted of medication, daily therapy, the diet, and supplements. Despite the lack of evidence on the merits of the diet, parents of autistic children like Jenny stand by its benefits. Medical experts remain skeptical about it (Roberts et al.).
The Diet Works
Dr. Paul Nash, a nutritional wellness practitioner, said that the body appears not to completely break down gluten and casein (Santanielli, 2008). He and other doctors who share his belief believe that the substances can change autistic children’s thinking and behavior. They drew their position from the results of lab experiments on animals, which exhibited behaviors similar to autism and schizophrenia, after an infection of the substances. Medical doctors, on the other hand and expectedly, are hesitant to accept that a change in diet can change children’s behavior (Santanielli).
Dr. Bryan Jepson is a biomedical expert on autism at the Thoughtful House Center for Children in Texas (Santanielli, 2008). Medical doctors would warn parents that the diet would be an expensive option, which offers only false hope. With 60-70% of his patients showing positive response, parents continue to be drawn to Dr. Jepson and his practice. Penni Ruben, director of Lakewinds Natural Foods, offers what customers ask for. He sells wheat-free, gluten-free, yeast-free and dairy-free foods. He also hosts cooking classes for parents who want to know how to prepare such foods. His wife, Janette, admits that the diet is hard to prepare and expensive. It costs $100 or more per month. But she considers it a food therapy, something that an autistic child needs to help his body and mind think and behave better (Santanielli).
Mechanism of Gluten Toxicity
This is best explained through a condition called gluten sensitive enteropathy or celiac disease (Department of Pediatrics Staff, 2010). This is an inflammatory condition in the intestines, which develops in response to small peptides from incompletely digested large gluten molecule. In celiac disease, a small peptide can cross the intestinal microvillus border. When processed by a transglutaminase enzyme, it can interact with immunological cells and produce cytotoxic inflammation. In autism, it is believed that peptides from gluten and casein cross the intestinal microvillus barrier and enter the blood stream. They also cross the blood-brain barrier. In the brain, certain amino acid sequences of these peptides compete with natural peptides, which bind to opioid receptors. These receptors are G-protein receptors in cell membrane surfaces of neurons. Binding to these receptors disturbs the neuronal function and ultimately leads to or contributes to autism (Department of Pediatrics Staff).
Limited Reliable Scientific Evidence
UK researchers investigated more than 30 scientific articles on the effectiveness of the gluten-free, casein-free diet on autistic children (Bastian, 2004). They found one, which provided reliable scientific evidence that the diet works. The particular study, however, was conducted on only 20 children aged 5-10 who had high levels of protein in their urine. When the diet was given to them, they exhibited reduced autistic traits. Nonetheless, the prevailing opinion was the need for more and larger randomized trials to support the result (Bastian).
Autistic traits include verbal and non-verbal communication, speaking when spoken to, lack of eye contact, repetitive talk and movement and non-sharing of emotions (Bastian, 2004). The researchers remarked about the difficulty of removing gluten and casein proteins from children’s diet. These substances are included in wheat, most cereals and dairy products. The researchers also said that children could suffer withdrawal symptoms if the substances are removed from their diet. Parents are advised to first obtain stronger evidence on the diet’s effectiveness before they make a decision to use it and make the difficult change in their lifestyle. They can get appropriate information from the Health Research and Education Foundation through its information arm, Informed Health Online, for free (Bastian).
These researchers performed the 2002 Cochrane Review, using the Danish Instrument for Measuring Autistic Traits ratings (Geraghty & Marschner, 2008). The instrument also covered social contact and ritualized behaviors. A review was conducted in 2006 and found no significant benefit derived from the diet in the treatment of ASD. A recent study showed that boys aged 5-6 with ASD had much thinner bones than those without the ailment. Boys on casein-free diets were found to have thinner bones twice than those with minimally restricted diets. Parents were advised to consider important matters before starting their children on the diet. They should first determine how many times a day their children eat foods with gluten and casein and what they will miss if they start on the gluten-and-casein-free diet. If these food products are a large part of their current intake, many nutrients will be missed. These are protein, mainly from dairy; calcium, Vitamin D, B Vitamins, and, quite importantly, iron. Parents who are decided to adopt the diet plan should also give their children a multivitamin-mineral supplement and additional calcium-Vitamin D supplement. They should also consult a registered dietitian if they will implement the diet plan (Geraghty & Marschner).
The gluten-free-casein-free diet first became popular when used to treat celiac disease (Sodergen, 2008). Celiac disease is a condition in which the body is unable to digest gluten properly, leading to intestinal injury. It became more popular with the emergence of lactose intolerance, food allergy and acid reflux. But it has not maintained the same level of popularity with its use to treat autism, attention deficit hyperactivity disorder or ADHD and other developmental learning disability or respiratory problems like asthma. Not only are these conditions unrelated to digestion. The diet treatment is also given to children. Parents who adhere to the diet even give to their toddlers. In removing gluten and casein, parents only eliminate corn, soy, sugar, food dyes and artificial additives. The issue and question has been how food can affect autism, which is a neuro-biological problem in the brain. Researchers at the Autism Center at Children’s Hospital of Pittsburgh explained that gluten and casein break down into morphine-line products when consumed. Autistic people have inflamed intestines and cannot expel these substances (Sodergren).
Director Cynthia Johnson of the Center said that the diet helps a subgroup of children with autism, although it does not work on all of them (Sodergren, 2008). She and her team studied 36 autistic children’s skills and behaviors while on the diet or Omega 3 supplements. It is not too easy putting a child on the diet. It eliminates chicken nuggets, macaroni and cheese, chocolate milk, and desserts. For this, a number of families usually stop using it. Dr. Johnson formed parent support groups for these families, which back out of the diet. But families, which saw quick changes in their children when placed on the diet, say it works. All the difficulties they put up with are worth the trouble. One child could go to the amusement park and talk only a few days off milk. Another child could speak three-word sentences from fewer words within a month’s use of the diet. Within a single day, another child, who used to be quite silent, began to make noises and his eyes glowed (Sodergren).
But it does not seem to work for all families (Sodergren, 2008). Some families are not able to remove every trace of gluten and casein from their autistic children’s foods. Other families simply say the diet does not work, even those who saw dramatic changes in the beginning. Those who travel a lot find it difficult to remain on the diet. Two weeks before their autistic child entered kindergarten, they put him out of it. A few families, which tried it and got good results, noticed that their child’s behavior had gone back. In the meantime, most of them felt it was still the right thing to try. One mother says there is no harm in trying it. Diet, for her, has a huge impact on anybody’s health, so the controversial diet is worth exploring (Sodergren).
Different Approaches to a Mysterious Condition
Autism remains a mystery, although a combination of genetic and environmental causes are believed to be behind it (Shukla, 2010). Current approaches include educational programs, drugs and special diets. Parents will try anything to get a cure but studies on the effectiveness of the diet free of gluten and casein have yielded mixed results. Not only is the diet difficult and expensive to prepare. There is also no guarantee that a child will get all the needed nutrients if placed on the diet (Shukla).
The Effects of Gluten on Autistic Children
Gluten is a problem only to those who are gluten- sensitive, like autistic people (Woeller, 2010). The substance is commonly found in wheat, which is the most frequent choice for making bread, pasta and other baked products. Hybridization has raised the amount of gluten in wheat today to a much higher amount than a century ago. There has also been a preference for the doughy texture of high gluten wheat (Woeller).
Gluten has already been known to cause skin disorders, autoimmune disease, digestive disorders, and neurological disorders (Woeller, 2010). Gluten promotes inflammation in the gut and other body systems. These are common problems occurring in autistic children. It can also predispose to food allergies because it damages the lining of the intestines. The finger-like projections, called villi, in a gluten-sensitive child are flat from the lack of ability to produce enzymes needed for digestion. The condition results in mal-absorption, a deficiency of nutrients and food allergies. Inadequate breakdown and poor absorption of food particles increase food allergies. Autism doctors believe that this is behind cognitive symptoms in autistic people. Language problems, poor attention, and self-stimulatory behavior are among these. Gluten proteins interfere with the action of brain chemicals. At the same time, behavioral problems, such as these, are associated with gluten sensitivity and autism, such as aggression, self-injury and tantrums (Woeller).
Autism doctors suggest to parents who suspect that their child is gluten sensitive or has unexplainable and chronic symptoms to conduct a test (Woeller, 2010). They should eliminate gluten from his meals for 3-4 months and observe. If his condition improves, parents have discovered the precise cure for gluten sensitivity. Gluten-free grains are available for them, such as rice, millet, buckwheat and corn (Woeller).
Double Blind Study at the University of Texas
Researchers at the Health Science Center are currently conducting the study to obtain serious evidence in response to increasing numbers of parents who believe in the diet (UPI, 2008). It will also deal with proliferating mis-information about the diet. The study involves 38 autistic children, aged 3-9, who will be given gluten-free and casein-free foods before a four-week study. Gluten and milk powder will be given to half of them and placebo to the other half. Autism doctors say casomorphin peptide in milk and gliaomorphic peptide in gluten affect the behavior of autistic children. Investigator Katherine Loveland said that many autistic children have gastrointestinal problems, such as constipation and diarrhea. She pointed to neurotransmitters and neuro-receptors in the gut, which correspond to those in the brain. Because of this connection, she believed that there could be some scientific basis to the beneficial effects of the diet (UPI).
No Significant Effects on Nutrition
To address the concern that a gluten-and-casein-free diet affects the food choice and nutrition of an autistic child, a survey was conducted with parents of autistic children aged 3-16 years (Cornish, 2002 p 261). The children had ASD and belonged to the National Autistic Society I Leicestershire and southern Derbyshire. There were only 8 children on the diet and 29 who did not take it. Detailed dietary information and a three-day food diary were obtained from the parents afterwards. In 12 children or 32%, nutrient intakes fell below the Lower Reference Nutrient Intake for zinc, calcium, iron, Vitamin a, Vitamin B12 and riboflavin among those not taking the diet. In comparison, four or 50% of those on the diet were on the same scale. Those on the diet had higher fruit and vegetable intakes and cereal, bread and potatoes intakes. The study found no significant difference in the food choice and nutrition between the two groups. It recommended a longitudinal prospective study to determine whether dietary intervention accounts for the differences of food choice or a requirement for the successful use of the diet among autistic children (Cornish pp 262-269).
Differing Nutritional Intakes Explored
Children with ASD intake a lot more vitamin B6 and E. And non-dairy protein, less calcium and fewer dairy than do children with typical development (Herndon et al., 2008 p 212). Many of the surveyed children failed to consume the national daily recommendations for fiber, calcium, iron, Vitamin E and Vitamin D These were the main findings of the comparative 3-day study on the dietary intake of 77 children, 46 with ASD and 31 with typical development between 2002 and 2006 and recruited from hospitals, clinics, schools and treatment facilities in Denver. A licensed clinical psychologist or experienced research assistant administered all measurements. Researchers attributed the difference partly to parental dietary restrictions in the use of the GFCF diet. The difference was greater among children aged 4-8 than among those aged 1-3. The conjecture was that children at 4-8 years may be more selective with foods. Those taking the GFCF were also in the 4-8 age group. Another observation was that ASD symptoms become more pronounced as children grow older. They develop the need for sameness and this leads to their choice of foods to eat. In contrast, those aged 1-3 tend to eat the foods given them and are also less likely to accept a varied diet. On the other hand, maturation changes accompanying the willingness to vary one’s diet occur less often in ASD children (Herndon et al. pp 212-213).
Past studies showed that autistic children were selective with their diet, probably due to repetitive behaviors and limited interests (Herndon et al., 2008 p 213). They often resist new things and these include new foods. In addition, they often have sensory hypersensitivities, which lead them to refuse foods of a different texture, temperature or other characteristics. Previous studies presented conflicting results on the adequacy of the nutritional intake of ASD children as compared to that of children with typical development. Shearer et al. (1982 as qtd in Herndon et al.) found that ASD children had significantly lower intakes of calcium and riboflavin and ate fewer dairy products as compared with children with typical development. Raiten and Massaro (1986 as qtd in Herndon et al.) found no significant difference between the intakes of the two groups. Schreck et al. (2004 as qtd in Herndon et al.) found that ASD children ate less fruit, dairy products, vegetables, proteins and starches than children with typical development (Herndon et al. pp 213-214).
Erickson et al. (2005 as qtd in Herndon et al., p 214) first reported on the concept of gluten sensitivity in autistic children in a critical review. Until then, the efficacy of the GFCF diet had yet to be established. Previous studies have provided information and insight into the nutritional intake of these children. But the sample sizes used and the lack of control compromised the validity and strength of the results. Moreover, these studies did not investigate if ASD children eat from the Food Pyramid. Focusing on micro-nutrients and macronutrient intake evaded the effects of dietary restrictions of ASD children, especially because most foods today are fortified with vitamins and minerals (Herndon et al. pp 216-222).
Effects of Dietary Treatments on Psychiatric Disorders in Children
Complementary medicines show a lot of promise of health benefits for these disorders but a lot more empirical research must confirm their efficacy (Soh & Walter, 2008 p 350). This was the finding of a recent study on the health effects of herbal and dietary treatments on psychiatric disorders in children and adolescents. The study was a response to the increasing use of complementary and alternative medicines or CAM by young people in Canada, the U.S.A., UK, Australia and New Zealand from 15-77%. Few studies have been conducted on CAM’s use and effectiveness on children with psychiatric disorders. The most popular CAMs are omega 3 fatty acids, St. John’s wort, kava, gingo, lemon balm and dietary manipulation. Omega 3 fatty acids have been tried in treating depression, ADHD, schizophrenia, dipolar disorder and autism. Children with ADHD and autism have been observed to have lower blood levels of the long-chain omega-3 fatty acids as compared with those without autism. Dietary modifications and supplementations include the use of glutamine and Vitamin C for depression, sugar-free or additive-free diets and amino acid, Vitamin and mineral supplements for ADHD and gluten-free and casein-free diet for autism. Only one empirical study on diet has been conducted and it was on the effects on food coloring and food preservative on hyperactive behavior (Soh & Walter, pp 351-353).
Potential side effects of CAM are a cause for concern because half to ae of CAM users do not inform their health care provider or medical doctor about their children’s use of the medicines (Soh & Walter, 2008 p 353). Clinicians do not routinely inquire patients about possible use of CAM. Even when an herbal or natural medicine shows some effect as treatment, product purity is not known or ensured. The contents of such products are largely unregulated in many countries (Soh & Walter pp 354-355).
A review of electronic databases was conducted to determine the efficacy of gluten and casein-free diets as an intervention treatment for autistic persons (Millward et al., 2008). The databases were the Cochrane Library Issue 2 of 2007, MEDLINE from 1966-April 2007, ERIC 1965-2007, LILACS 1982-April 2007, and the National Research register of 2007. The review sought all randomized controlled trials on programs, which removed gluten and/or casein from the diet of autistic individuals. It found that the trials included did not have common outcome measures and, therefore, did not permit meta-analysis. Only 3 significant treatments showed positive effects of diet intervention on overall autistic traits. These traits were social isolation and overall ability to communicate and interact. Research revealed high rates of use of CAM therapies for autistic children, such as gluten-free and casein-free diets. But current evidence of their efficacy proved poor, requiring more, larger and good-quality randomized controlled trials (Millward et al.).
The review was prompted by rising incidence of diet use from the contention that
gluten and casein peptides produce excessive opioid activity in autistic persons (Millward et al., 2008). The extensive search sought evidence supporting the contention from randomized control trials in the databases. Only 3 papers reported on 2 such randomized control trials were found. The first had 10 participants and the second had 15. The result of the first revealed that a combined gluten and casein-free diet reduced autistic traits. The result of the second yielded no significant difference in outcomes between the diet group and the control group. None of the studies found recorded adverse outcomes or potential harm (Millward et al.).
The research also noted that CAM therapies, including gluten-free and casein-free diets, are widely used by parents of autistic children. This was the trend despite the lack of scientific evidence to support the therapies as effective interventions and a lack of research on their potential harm (Millward et al.).
The GFCF Diet
Many parents of autistic children want to know if the diet really works ((Web MD, 2010). Some of these children are allergic or sensitive to either gluten or casein and seek allergy confirmation. Despite a negative allergy finding, many parents still opt to put their autistic children into the GFCF diet. This is because of observed improvement in speech and behavior the diet is believed to bring about (WebMD).
The theory behind explains that autistic persons process gluten and casein differently from autism-free persons (Web MD, 2010). Autistic persons are allergic or highly sensitive to them. Gluten and casein exacerbate autistic symptoms because their brain treats the proteins as opiate-like chemicals. As a result, autistic persons act in a certain and abnormal way. Thus, autistic children must be given foods without gluten and casein in order to reduce their symptoms and improve their social and cognitive behavior and speech. Researchers found that autistic persons, in fact, have abnormal levels of peptides in their body fluids. But the effectiveness of the diet is still not proved and needs stronger substantiation from randomized clinical trials. In the meantime, current data showed a lack of scientific evidence and research to back it up. There is no basis for saying it is helpful or not (Web MD).
In addition, eliminating the proteins from food sources has been shown to be difficult and expensive (Web MD, 2010). Many natural and healthful foods contain gluten and casein. But many stores have responded to the increasing demand for GFCF foods and are now offering gluten-free foods in a special part of their stores. An autistic child or person on the GFCF diet should be given supplements of fiber, vitamins and minerals missed by the diet. In the meantime, casein is present in dairy products and other foods, which are dairy-free or lactose-free. Many soy products and dairy-like products also have casein. Calcium and Vitamin D supplements should be given to persons on the casein-free diet to make up for their lack (Web MD).
Many parents who have adopted the diet for their children buy and store large quantities of GFCF foods for later use (Web MD, 2010). They are advised to consult their child’s doctor or licensed dietitian about the decision. These experts can guide them in adjusting the diet to their child’s needs and preferences. Parents should also be made aware of the hidden sources of gluten, such as flour in fried foods and even cosmetics. They should prefer whole foods for safety. They should avoid packaged mixes, which often contain traces of gluten, which are not declared on the information label. Some restaurants serve GFCF menus. Vegetarian or vegan restaurants cater to special diets (Web MD).
Researchers at a symposium, entitled “Outrageous Developmental Disabilities Treatments,” said that there was insufficient scientific evidence to warrant the effectiveness of the GFCF diet (Busko, 2007). The symposium was part of the 115th Annual Convention of the American Psychological Association in San Francisco. They noted that the incidence of autism had gone over 200% between 1987 and 1998 alone. Treatments correspondingly increased to hundreds of different types. Parents of autistic children try an average of 7 of these, according to a survey of the 552 members of the Autism Society of America. Symposium chairman James Mulick attributed the rise in the number of cases o better diagnoses and the broadening of the range of similar disorders. Early behavior interventions often produce positive outcomes on autism. One such intervention is the highly structured one-on-one behavioral approach of up to 40 hours a week for many years. The high expense and difficulty of obtaining this approach could lead many parents to look for other forms of treatment (Busko).
Presenter Tracy Kettering from the Ohio State University reported on the more popular fad treatments for autism (Busko, 2007). Three small and well-designed studies on the combination of Vitamin B6 and magnesium found the treatment ineffective. Two studies on the gluten-free/casein-free diet showed no improvement on autism symptoms. Other interventions used secretin, holding therapy, animal therapy and hyperbaric oxygen therapy for autistic children. None of these proved effective. Dr. Mulick commented that fad treatments like these and others can even be harmful. Chelation therapy, for example, involves medicines to control the mercury level in the body. In one case, the therapy resulted in the death of 1 autistic boy (Busko).
Dr. Mulick also believed that fad treatments have become popular because parents opt for them before their children’s symptoms get worse (Busko, 2007). When the symptoms disappear or improve, parents credit the fad therapy. He explained that autism studies take a lot of time and expense to conduct. Hence, some current fad treatments will never get tested. They are, thus, too dangerous to use (Busko).
Fact or Fiction?
Records show that dietary treatment of children with behavioral disorder has been popular and a source of controversy at the same time since the 1920s (Cormier & Elder, 2007 p 138). But up to the present, there has been little empirical scientific evidence that supports their effectiveness. These behavioral disorders are, in particular, autism and ADHD. The use of dietary interventions has become popular in primary care settings despite the want of scientific evidence on their efficacy and safety. Parents often consult clinicians about the benefits of dietary interventions or restrictions to treat their children’s behavioral problem. Clinicians and other healthcare providers are, therefore, accountable for the accuracy and appropriateness of the information and advice they give these parents (Cormier & Elder pp 139-140).
The common dietary interventions are the additive-free diet, sugar elimination diet, fatty acid supplementations, food allergy and sensitivity elimination diet, and the GFCF diet (Cormier & Elder, 2007 p 140). Cade and his colleagues (1999 as qtd in Cormier & Elder) were among the first to study the effect of this diet on autistic people. They investigated 270 of them, 120 of whom had schizophrenia and 149 with DSM III-criteria diagnosed autism. All the children were given the diet, made of the Milk Free Kitchen by Kidder and the Gluten-Free Gourmet: Living Well without Wheat by Hagman. The sample children were independently evaluated by parents, physicians and some teachers, using a four-point Likert scale. The ratings were repeated a month after the treatment and every 3 months thereafter for a year. Blood samples were taken and examined for the level of peptide absorption in wheat and dairy products as well as the associated antibodies, immunoglobulin G. And transindolylacryloyglicine for each of the food products. Results showed that 87% of the autistic children had high immunoglobulin G. antibodies to gliadin and 30% high titer immunoglobulinA before the diet treatment was started. Improvement was reported at 81% within 3 months, believed to draw from a combination of physiological and behavioral measures. However, the behavioral findings came mostly from parents and teachers who were aware that the children were using the diet (Cormier & Elder pp 140-141).
Researchers Arnold, Hyman, Mooney and Kirby (2003 as qtd in Cormier & Elder, 2007 p 141) compared the amino acid levels among 26 autistic children on a regular diet, 10 on the GFCF and 26 with developmental delays. They found that autistic children were at a higher risk for amino acid deficiency than the other children. They may, therefore, benefit from a diet suited to their deficiency. One constraint was the lack of strict dietary control for children on the GFCF diet when subjected to dietary research.
Another research team, led by Knivsberg, Reichelt, Hoien, and Nodland (2002 as qtd in Cormier & Elder), conducted a randomized study on 20 autistic children with urinary peptide abnormalities. They demonstrated improvement in autistic behavior, non-verbal cognitive level and motor skills. Additionally, Wolraich (1996 as qtd in Cormier & Elder) cautioned clinicians about some parents’ belief in the effect of the diet. Their power of suggestion and strong attention to their children’s compliance can elude the true effects of the diet (Schnoll et al. 2003 as qtd in Cormier & Elder pp 141-142).
Future researchers should look into and evaluate not only what parents “know” about their children’s condition but also what they believe and who the credible sources are (Cormier & Elder, 2007 p 142). Parents should always be aware of their sense of powerlessness and tendency to resort to “magic” interventions. They should, instead, recognize that proper and effective treatment involves a number of educational, behavioral and parental interventions. Clinicians must consider the possibility of treatment placebo effect, reflecting the family’s values and attitudes towards treatment. Moreover, maintaining a highly restricted diet even briefly exacts tedious commitment from the family. Such diets also incur nutritional deficits. The pediatric nurse comes in at this point to provide support and education to families, arrange for consultation with a nutritionist, and offer objective evaluation tool for possible changes in condition if the family really chooses to implement the diet (Cormier & Elder pp 142-143).
No Effect on Symptoms
A research team from the University of Texas at Austin’s Meadows Center Autism Spectrum Disorders Institute found that current research does not support the GFCF diet as treatment for autism (Randall, 2010). The team critically analyzed 15 published major scientific studies on the diet. It noted that many causes for ASD are still unknown. Despite this, treatments have been devised and offered to the public without sufficient scientific evidence of effectiveness and safety to back them up. Among the proposed causes of autism is insufficient enzymatic activity in the gastrointestinal tract and increased gastrointestinal permeability. The intestines tend to absorb toxic by-products of the incompletely digested protein, gluten and casein. The team pointed to gross methodological errors in studies supporting the diet as an ASD treatment. Lead researcher Austin Muloy of the Institute said that documented phenomena other than diet efficacy can explain the outcomes of those studies. In consideration of the adverse consequences of the diet, he and his colleagues recommended its use to doctors only for children with allergies or intolerance for gluten or casein (Randall).
Effects of GFCF on Autism Symptoms
The tightly controlled study, recently conducted at the University of Rochester, found that eliminating gluten and casein from the diet of autistic children did not affect their behavior, sleep or bowel patterns (Hare, 2010). The most controlled diet research in autism to-date, it insured that the 22 surveyed children, ages 2-1/2- 5 1/2 years old, received the needed nutrients. It was motivated by the assumption that autistic children consume inadequate amounts of Vitamin D, calcium, iron and high-quality protein. The study included behavioral treatments as additional interventions to observe changes developing from dietary alterations (Hare).
Principal investigator, Dr. Susan Hyman, said GFCF could have been the answer to the problem of autistic people and their families (Hare, 2010). But the study was not big enough and the benefits not significant enough. It did not include children with significant gastrointestinal disease to validate the results. However, Dr. Hyman believed that children with gastrointestinal disorders may still benefit from the diet. The University of Rochester embarked on the trial in 2003 in response to the increasing demand for evaluating the effects of GFCF. At that time, parent observation was an important basis for treatment discoveries, such as the benefit of melatonin for sleep (Hare).
The trial was planned for 18 weeks for each family (Hare, 2010). The families of the respondent-children had to comply strictly to the diet and participate in early intensive behavioral intervention. The children were tested for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. They were closely monitored throughout the study to make sure they were getting adequate Vitamin D, iron, calcium, protein and other nutrients. After four weeks, they were tested in randomized order. They were given a weekly snack of 20 grams of wheat flour, 23 grams of non-fat dried milk, both or neither. No one could detect what the snack contained. The snacks were made to look, taste, and feel the same but met the children’s preferences for snacks. Pudding, yoghurt and smoothies secretly contained casein. Banana bread, brownies and cookies had gluten, known only to the nutritionist. Parents, teachers and a research assistant filled out the surveys on the child’s behavior after the snack after 2 hours and then after 24 hours. If the child showed unusual behavior, his snack was postponed. Parents also had to keep track of their children’s food intake, sleep and bowel habits. They also evaluated the children’s social interaction and language with a research assistant by using videotaped scoring of a standardized play session (Hare).
The study concluded that the participating children had no change in attention, activity, sleep or frequency or quality of bowel habits (Hare, 2010). They registered only a small increase in social language and interest in interaction after taking the diet as described earlier. The small difference may be because of the limited sample or mere chance. The researchers emphasized that the study was aimed at determining the effects of removing gluten and casein from the diet of these autistic children and the consequences of receiving early intensive behavioral intervention. Dr. Hyman also said that over-nutrition and under-nutrition have many possible effects on the behavior of ASD children. These have to be scientifically investigated to enable families to make sound decisions about their children’s therapies (Hare).
Diet may not improve Symptoms
Statistics say that one in 110 American children has ASD, characterized by difficulties in social interaction and communication as well as bowel irregularities (Doheny, 2010). The search for a cure for autism drove the autism diet, GFCF, to popularity and about 27% of parents of autistic children praising it for its effects. Then the University of Rochester Medical Center research team came out with the finding that the diet does not improve symptoms. But critics argued that the 18-week study conducted was not sufficient to obtain real change. They said it should be as long as six months to a year. Parents should stay on the autism diet, despite findings of ineffectiveness, critics maintained. But they should do so with greater skepticism and watchfulness over Vitamin D and calcium deficiencies, which occur while on the diet. They suggested that parents should ascertain the specific symptoms or behavior to change and a way to assess changes that occur. This can reduce objections to parents’ subjective assessment of their children’s improvement, a stumbling block to many interventions (Doheny).
Method, Design and Sample
This pilot study intends to evaluate the effects of the GFCF diet on severe autistic symptoms and on urinary peptide levels and the role and impact of parental behavior in the effects of the diet. It will use the Childhood Autism Rating Scale or CARS, Ecological Communication Orientation Scale or ECOS and direct behavioral observation frequencies. The sample will consist of 18 ASD children, aged 1-5, 2 of them Asian and the rest were Caucasian. The parents will be asked for signed statements of informed consent. Children suffering from or with medical histories of sensory defects or serious medical conditions, such as celiac disease, will be excluded from the investigation.
This will be a randomized, double blind measures crossover design of 18 children. It will compare regular diet and GFCF diet and their effects on autism symptoms. The effects will be measured by the CARS, ECOS, frequencies of social initiating acts, social responses, intelligible spoken words and non-speech vocalizations. The CARS will be the primary measure of efficacy to be made at baseline in week 6 and week 12. Urinary peptide levels will be measured at 5 point.
In-home observation will be conducted to monitor child initiating, child responding and intelligible words spoken, parent initiating, parent responding and parent expectant waiting. A training research assistant will videotape each child with parent, who performs primary functions, for 15 minutes. Coders will use the videotapes to tabulate interaction and behaviors. Data will be gathered at 3 different periods and at the end of the study. #
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