Casein-Free Diet

Definition

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.

Origins

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.




Dairy-free foods are free of casein, a protein found in milk.





Dairy-free foods are free of casein, a protein found in milk.
(Tim Gainey/Alamy Stock Photo)

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.

Description

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.

Autism incidence and treatment

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).

GFCF diet preparation

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:

Function

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.

Benefits

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.

Precautions

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.

Risks

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.

KEY TERMS
Casein—
A protein that accounts for about 80% of the protein content in milk and cheese. Its name is derived from the Latin word for cheese.
Gluten—
A protein composed of two smaller proteins called gliadin and glutenin. Gluten accounts for about 80% of the protein content of wheat and other grains and is a major world source of nutritional protein.
Peptides—
Short molecules formed by the linking of two or more amino acids. Peptides are smaller molecules than proteins and may be formed by the partial breakdown of proteins.
Psychotropic—
Referring to any type of drug that has an altering effect on the mind.
Triticale—
A hybrid grain produced by crossing wheat and rye.

Research and general acceptance

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.

QUESTIONS TO ASK YOUR DOCTOR

See also Calcium ; Digestive diseases ; Gluten-free diet ; Hyperactivity ; Protein ; Soy .

Resources

BOOKS

Compart, Pamela J., and Dana Laake. The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet. 2nd ed. Beverly, MA: Fair Winds, 2009.

Le Breton, Marilyn. Diet Intervention and Autism: Implementing the Gluten-Free and Casein-Free Diet for Autistic Children and Adults: A Practical Guide for Parents. Philadelphia: Jessica Kingsley, 2001.

Lord, Susan. Getting Your Kid on a Gluten-Free Casein-Free Diet. Philadelphia: Jessica Kingsley, 2001.

Oller, John W., and Stephen D. Oller. Autism: The Diagnosis, Treatment & Etiology of the Undeniable Epidemic. Sudbury, MA: Jones and Bartlett, 2010.

PERIODICALS

Autism Research Institute. “Parent Ratings of Behavioral Effects of Biomedical Interventions.” ARI Publication 34 (March 2009). http://www.autism.com/pdf/providers/ParentRatings2009.pdf (accessed April 30, 2018).

Christison, G. W., and K. Ivany. “Elimination Diets in Autism Spectrum Disorders: Any Wheat amidst the Chaff?” Journal of Developmental and Behavioral Pediatrics 27, no. S2 (April 2006): S162–71.

Elder, J. H. “The Gluten-Free, Casein-Free Diet in Autism: An Overview with Clinical Implications.” Nutrition in Clinical Practice 23, no. 6 (December 2008–January 2009): 583–88.

Erickson, C. A., et al. “Gastrointestinal Factors in Autistic Disorder: A Critical Review.” Journal of Autism and Developmental Disorders 35, no. 6 (December 2005): 713–27.

Harrington, J. W., et al. “Parental Perceptions and Use of Complementary and Alternative Medicine Practices for Children with Autistic Spectrum Disorders in Private

Practice.” Journal of Developmental and Behavioral Pediatrics 27, no. S2 (April 2006): S156–61.

Myers, Scott M., and Chris PlauchéJohnson. “Management of Children with Autism Spectrum Disorders.” Pediatrics 120, no. 5 (November 2007; reaffirmed September 2010): 1162–82. http://dx.doi.org/10.1542/peds.2007-2362 (accessed March 20, 2018).

Pennesi, C. M., and L. C. Klein. “Effectiveness of the Gluten-Free, Casein-Free Diet for Children Diagnosed with Autism Spectrum Disorder: Based on Parental Report.” Nutritional Neuroscience 15, no. 2 (2012): 85–91.

Reichelt, K. L., and A. M. Knivsberg. “The Possibility and Probability of a Gut-to-Brain Connection in Autism.” Annals of Clinical Psychiatry 21, no. 4 (October–December 2009): 205–11.

Whiteley, P., et al. “The ScanBrit Randomised, Controlled, Single-Blind Study of a Gluten- and Casein-Free Dietary Intervention for Children with Autism Spectrum Disorders.” Nutritional Neuroscience 13, no. 2 (April 2010): 87–100.

WEBSITES

Autism Research Institute (ARI). “Tips for Implementing Special Diets.” http://www.autism.com/index.php/treating_diets (accessed March 20, 2018).

Centers for Disease Control and Prevention. “Autism Spectrum Disorder (ASD).” http://www.cdc.gov/ncbddd/autism/index.html (accessed March 20, 2018).

GFCF Diet / Intervention – Autism Diet. GFCF Diet.com . http://www.gfcfdiet.com/ (accessed April 30, 2018).

National Institute of Neurological Disorders and Stroke. “Autism Spectrum Disorder Fact Sheet.” https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Autism-Spectrum-Disorder-Fact-Sheet (accessed March 20, 2018).

Talk about Curing Autism (TACA). “Going GFCFSF in 10 Weeks!” October 28, 2015. https://www.tacanow.org/family-resources/going-gfcfsf-in-10-weeks (accessed March 20, 2018).

ORGANIZATIONS

American Academy of Pediatrics (AAP), 141 Northwest Point Blvd., Elk Grove Village, IL, 60007, (847) 434-4000, (800) 433-9016, Fax: (847) 434-8000, http://www.aap.org .

Autism Research Institute (ARI), 4182 Adams Ave., San Diego, CA, 92116, (866) 366-3361, Fax: (619) 563-6840, http://www.autism.com .

Talk About Curing Autism (TACA), 2222 Martin St., Ste. 140, Irvine, CA, 92612, (949) 640-4401, Fax: (949) 640-4424, http://www.tacanow.org .

Rebecca J. Frey, PhD

  This information is not a tool for self-diagnosis or a substitute for professional care.