Research status of the GFCF diet in the treatment of autism
June 18, 2009
The current research status of the gluten-free, casein-free diet in the treatment of autism
Treatment for Autism – a complex disorder that hampers the ability to communicate and behave socially – usually consists of comprehensive educational programs, developmental therapies, and behavioral treatment. Several different nutritional strategies have also been suggested, such as the restriction of food allergens, the yeast-free diet, and the use of probiotics and dietary supplements. Among these, one of the most popular interventions is the gluten-free/casein-free (GFCF) diet, a diet that eliminates gluten (found in wheat, barley and rye) and casein (found in dairy products).
A recent article, published in Nutrition and Clinical Practice by Dr. Jennifer Elder reviews the current scientific status of the GFCF diet, and provides advice for families and health professionals to use in deciding if a trial of the GFCF diet is in the best interest of their child and family. Here we summarize the main points highlighted by the researcher.
As she describes, one of the main hypotheses behind the adoption of the GFCF diet is the idea that some autistic symptoms and behaviors may be the result of an excess of opioid peptides (a chemical substance that has morphine like action) in the body. The hypotheses postulates that the increased intestinal permeability frequently found in autistic individuals allows large peptides formed from the incomplete digestion of gluten and casein to cross the intestinal membrane. These large peptides derived from the breakdown of gluten and casein would act as opioids produced naturally in the body, entering the bloodstream and then crossing the blood-brain barrier. The resulting excess of opioids within the central nervous system is thought to lead to some behaviors noted in autistic children, with the removal of these substances from the diet hence paralleling a change in autistic behaviors in some children.
Results of the GFCF Diet Trials in Autism
The results from the scientific studies conducted to examine the effects of the diet on the improvement of symptoms are still preliminary, as a larger number of participants, as well as more rigorous control of compliance to the diet and standardized diagnostic measures would be necessary to enable firm conclusions to be drawn. Here is a summary of the main findings reviewed:
- In a study from 2003 involving 50 children with autism, blood analysis revealed that a significant number of the children developed antibodies against casein and gliadin.
- Another study involving 20 participants, showed that, although changes were observed both in the group following the GFCF diet and that following a regular diet (control group), the group following the diet had a significant improvement in autistic behavior, nonverbal cognitive level, and motor problems compared with those in the control group.
- Finally, a study published in the Journal of Autism and Related Disorders involving 13 children and a more rigorous control of the diagnostic measures implemented the diet for a 12-week period. This study showed that, while there were some anecdotal parent and teacher reports of positive dietary effects on language and behavior, the statistical analysis of the group as a whole did not show differences in their behaviors (it is interesting to note here that 7 of the 13 families in the study reported improvements – increased child language, decreased hyperactivity, decreased tantrums – that were not corroborated by the diagnostic measures used by the researchers). The authors acknowledge however that a longer period might be necessary to compensate for the possibility that children following the diet ‘sneak’ food, and the fact that some children may take longer to show improvements.
Implementing the Diet
Although the scientific results are still preliminary, and more research is still needed, Dr. Jennifer considers the GFCF diet as a promising intervention. However, she urges families and nutrition professionals to regularly evaluate the pros and cons of all dietary approaches to treatment, and consider the following questions when weighing the pros and cons of implementing the GFCF diet:
1. Can the family afford the often expensive foods in the GFCF diet, and are these readily available?
2. Has the family considered the extra time and effort that may be needed to prepare the diet?
3. Is there a commitment by at least 1 family member to keep accurate daily records of food intake and behavioral changes?
4. Will it be possible to ensure dietary compliance at home and, when applicable, at school?
5. Is there a family member or professional who can offer practical advice for preparing and implementing the diet?
6. Are there professionals in the geographical area who might assist in evaluating the diet?
7. What is the overall health status of the child?
8. Is there a plan for regular monitoring? (this is important, since reports of bone loss and amino acid deficiencies in children who have been on the GFCF diet suggest that nutrition status should be constantly monitored and that, in some cases, supplemental vitamins and minerals may be indicated)
9. Does the child have a limited food repertoire that, if further limited by the GFCF diet, might result in a dangerously compromised nutrition status?
Future research
Currently there are two studies being conducted, one in Norway (http://clinicaltrials.gov/ct2/show/NCT00614198), and another in the United States (http://clinicaltrials.gov/ct2/show/NCT00090428?term=autism+diet%26rank=2). As scientists await further evidence about the effectiveness of the diet in the improvement of the symptoms, it is important to carefully consider the pros and cons of the diet to ensure the health of children under any dietary intervention.
More information: Elder JH. 2009. The gluten-free, casein-free diet in autism: an overview with clinical implications. Nutr Clin Pract. 23
My son has been GF/CF/EF for over 3 years. He has shown great improvement in all areas of behavior and health. He began to sleep through the night during the first week of being on the diet, which he had never slept more than 4 hrs at a time before implementing the diet. This in itself was a huge step in his recovery process. He is currently 9 yrs old and sleeps about 10 hrs a night. His food choices have widened to include more healthy choices, more vegetables and fruits, less cravings for snacks and junk food, better tolerance of food textures. HIs receptive language and cognitive skills improved, as well as his expressive communication through the use of sign language, PECS, and typing. He has much less stimming and rarely ever tantrums. His immune system has improved, gets ill less frequently and for shorter periods of time, and his labwork has shown increased improvement in his overall health. Changing my son’s diet was the best thing we ever did for him!
Thanks for the research update!
There are so many anecdotal reports out there about positive results of the GFCF diet with children, I am thrilled that clinical research is product (mostly) similar results so that more and more docs, parents, and other clinicians will be open to using the diet as an intervention.
It is so true that the diet and monitoring of the diet and behavior take significant commitment on the part of the family, but there are not really any treatments for ANY disease or disorder that don’t take commitment.
My most significant suggestion: find ways to make the new diet fun for everyone in the family. Instead of looking at a new diet a limiting, see how many new foods are GFCF and make it a family activity to try new foods out every week. Just my two cents.
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