The casein-free diet is a diet that has been tried since the early 1990s as a treatment for autism. Casein is a protein that accounts for 80% of the protein in cow milk and cheese and is similar in its molecular structure to gluten, a protein found in wheat, barley, and other grains. If the diet excludes foods containing gluten as well as dairy products, it is called the gluten-free, casein-free (GFCF) diet. If soy products are also excluded, the diet is called the GFCFSF (gluten-free, casein-free, soy-free) diet. The American Academy of Pediatrics considers the GFCF diet an alternative therapy for autism rather than a mainstream medical treatment.
The basic idea that some psychiatric and developmental disorders can be treated with dietary interventions dates back to the 1960s, when some researchers noted that certain societies in the South Pacific had lower than average rates of schizophrenia as well as diets that were almost completely free of grain and dairy products. The researchers theorized that schizophrenia might be caused by a genetic mutation that prevents patients from completely digesting gluten and casein, and that elevated levels of peptides in the blood might be responsible for the bizarre behavior associated with schizophrenia.
This theory was not applied to autism until the early 1990s, when Kalle Reichelt, a physician-researcher in Norway, noted that urine samples from children with autism often contained higher-than-normal levels of peptides. Reichelt theorized that peptides from incomplete digestion of gluten and casein not only enter the bloodstream from the small intestine in these children, but also act like opioids on the brain and affect the development of the growing brain. Reichelt has since published several papers maintaining that the GFCF diet is an effective treatment for autism.
The GFCF diet requires parents to exclude all foods and personal care products made from or containing gluten and casein from the child's diet.
Most websites about the GFCF diet contain links to companies that make gluten- and casein-free substitutes for such popular foods as breakfast cereals, pasta, pizza, and ice cream, while others include lists of ingredients that can be substituted for flour, milk, butter, etc., in ordinary recipes.
Parents are usually advised to try the GFCF diet for at least three full months before determining whether or not it is helping their child.
It is difficult to estimate how many families may be using the GFCF diet. According to the American Academy of Pediatrics (AAP) and the U.S. Centers for Disease Control and Prevention, approximately 1 in 88 children have an autism spectrum disorder. Opinions vary, however, on the best way to manage the symptoms of autism. The AAP classifies the two major types of treatment approaches as psychosocial (e.g., cognitive behavioral therapy) and medical. Medical approaches include both psychotropic medications and some complementary and alternative medicine (CAM) treatments. The AAP further subdivides CAM approaches into nonbiological treatments (craniosacral manipulation, auditory integration training, music therapy, and behavioral optometry) and biological treatments (vitamin supplements, detoxification diets, and chelation therapy, as well as the elimination diet).
Most parents who have tried the GFCF diet recommend introducing it in stages, to prevent the child from becoming emotionally upset by the sudden loss of favorite foods and to give the child's digestive system time to adjust to the removal of gluten and casein from the diet. It is commonly recommended to begin the diet during the summer or a lengthy school holiday when the child is at home most of the time. Each week or two, certain foods should be eliminated from the diet:
The goal of the GFCF diet is to manage the symptoms of autism, especially the repetitive behavior and communication problems characteristic of the disorder; to improve the child's social interactions with others; and to improve the child's chances of eventual functional independence. The GFCF diet is used almost exclusively in treating preschool or school-age children with autism, but it is occasionally used to treat adults.
There appears to be some disagreement regarding the proportion of children with autism that are helped by the diet. Some websites about the diet state that about a third of children with autism show improvement on the GFCF diet, but estimates range up to 91%. Children who benefit from the GFCF diet will need to remain on it for the remainder of their lives to continue its effects.
Parents considering the GFCF diet as a treatment for a child with autism should consult a registered dietitian (RD), as well as their pediatrician and possibly a psychologist or psychiatrist experienced in managing autism spectrum disorders.
There are several precautions that families considering the GFCF diet should keep in mind:
It will be up to caregivers to make sure that the child remains on the diet. Parents will need to monitor the child's response to the diet and report it to the child's doctor periodically.
The GFCF diet is not known to pose any risks to a child's physical health as long as parents work with a pediatrician or RD to ensure that the child is still receiving enough vitamins and nutrients. However, the loss of foods that are favorites of many children—such as pizza, potato chips and other snack foods, chocolate, and ice cream—can lead to tantrums, food stealing, and other behavioral problems. It may help the child adjust to the diet if other family members do not eat any of the eliminated foods in front of the child. Parents may wish to explain the diet to other relatives and to the child's teachers, as well.
Opinion is divided on the efficacy of the GFCF diet as a treatment for autism. The primary difficulty is the lack of solid evidence that the diet is effective. There have been few large studies of the GFCF diet in mainstream medical literature. Still, some mainstream physicians maintain that the diet is not likely to harm the child, is less expensive than medications, and may help some children.
To some extent, the lack of consensus about the diet is rooted in a deeper problem, namely ongoing disagreement on the causes of autism. While many children with autism do have gastrointestinal disorders, there is not yet any evidence of gastrointestinal factors specific to children with autism, and not all children with autism experience adverse gastrointestinal symptoms. Information on ongoing clinical trials is available at the U.S. National Institutes of Health– sponsored website ClinicalTrials.gov.
See also Calcium ; Digestive diseases ; Gluten-free diet ; Hyperactivity ; Protein ; Soy .
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Rebecca J. Frey, PhD