Children with Autism Spectrum Disorder (ASD) are often picky eaters, which can lead parents to suspect that their children might not be getting adequate amounts of vitamins and minerals. This sometimes leads parents of children with ASD to try nutritional supplements and dietary regimens such as gluten-free and casein-free (GFCF) diets without professional supervision. In the largest study of its kind, published in the Journal of the Academy of Nutrition and Dietetics, researchers report that these well-intentioned efforts can result in both insufficient nutrients and excessive nutrients. Despite supplementation, children with ASD still were deficient in calcium, for example, while some were consuming excessive amounts of vitamin A and other nutrients.
“Many families try a GFCF diet in an attempt to improve symptoms of ASD,” explained lead investigator Patricia A. Stewart, PhD, RD, assistant professor of Pediatrics, the University of Rochester Medical Center. “While 19% of all Autism Speaks Autism Treatment Network (AS ATN) participants were reported to be on a GFCF diet, 12% of the children in the subgroup participating in this study were given a GFCF diet and were significantly more likely to use nutritional supplements (78% vs 53%), however, the micronutrient intake of children on or off the diet was remarkably similar.”
A total of 368 children between 2 and 11 years of age were recruited from five AS ATN sites at Cincinnati Children’s Hospital, University of Arkansas, University of Colorado, University of Pittsburgh, and University of Rochester. All had been diagnosed with Autistic Disorder, Asperger Disorder, or Pervasive Developmental Disorder as defined by the DSM-IV.
Three-day food records were completed for the children by their caregivers. A registered dietitian nutritionist trained the caregivers to record the amount of all foods, beverages and nutritional supplements consumed including brand names and recipes used for food preparation. In the case of nutritional supplements, photographs of the labels were taken to insure that ingredients were accurately recorded. Registered dietitian nutritionists verified these records and immediately called families if clarification was needed.
By examining these detailed eating records, investigators found that the children were consuming similar amounts of micronutrients as children without ASD. They also had the same deficits in vitamins D, E, calcium, potassium, and choline as the general pediatric population. Although ASD children are given supplements more often (56% vs. 31-37% of the general population), even after supplementation, 40-55% were lacking in calcium and 30-40% were lacking in vitamin D.
Children on the GFCF diet consumed more magnesium and vitamin E. This may be due to the substitution of soy and nut-based products. Children on this diet were more adequately supplemented with vitamin D. Calcium supplementation was equally inadequate in those on and off the diet.
The Autism Diet and Why It Doesn’t Help Everyone
There’s been a lot of press lately that the gluten free casein free diet doesn’t help the symptoms of autism. This is not a completely accurate statement but I would heartily agree, in general, that the gluten free casein free or GFCF diet does not help everyone with autism. The press and your doctor might not fully understand why this is the case. The press and conventional medicine is again trying to debunk the fact that alternative treatments and simple diet changes do not work in the treatment of autistic children. This is completely wrong and harmful to autistic children.
I’ve been treating autistic children for over a decade now and I have extensive experience on the subject. I agree that the gluten free, casein free diet does not work for everyone nor does it even work for most kids. After testing hundreds of kids with autism for food sensitivities it is generally uncommon for autistic children to be BOTH intolerant to casein and gluten. Casein is the protein found in milk and dairy products like cheese, ice cream, chocolate, sour cream, butter, yogurt etc. Gluten is the protein found in a number of common grains including wheat, oats, barley and rye. In my testing and treatment of children with food intolerance in autism children may have either, both or neither intolerance to gluten and casein yet be very sensitive to other things like baker’s yeast, brewer’s yeast, tomatoes, almonds, grapes, apples etc. In short, just because a child is autistic does not make them automatically sensitive to gluten or casein. Blood testing can clear up this answer for you. Some children are not gluten intolerant but yet are sensitive to wheat. Some kids are intolerant to oats but wheat and milk are ok. Diets are as complex as each child is. There is no one size fits all diet. There is no such thing as an autism diet since not all autistic children are intolerant to the same things.
- Posted by Dr. Suzann Wang
Despite different eating behaviors, children with ASD received much of their needed micronutrients from food consumption. This might be due to the high levels of fortification in the modern food supply, where vitamins and minerals are often added. This fortification may also be responsible for the overconsumption of certain nutrients by children with ASD. For the supplement users in this study, many exceeded the Tolerable Upper Limit for safe intake levels of vitamin A, folic acid, and zinc.
“In clinical practice, each patient needs to be individually assessed for potential nutritional deficiencies or excess. Few children with ASD need most of the micronutrients they are commonly given as multivitamins, which often leads to excess intake that may place children at risk for adverse effects. When supplements are used, careful attention should be given to adequacy of vitamin D and calcium intake,” Dr. Stewart noted.
What do gluten and casein have to do with autism?
More than 40 years ago, researchers began investigating a possible link between these two substances with autism. They theorized that autistic children do not have the ability to break down the proteins found in gluten and casein, causing problems that today are sometimes referred to as “leaky gut.”
This theory remains unproven by science, with no successful double-blind studies to date. However, there are numerous reports that show great promise, and extensive anecdotal evidence of its efficacy based on parental report.
Many parents, through personal experience, have seen significant breakthroughs for their children. Most often reported is a healing of gastrointestinal problems.
Points to ponder about a GFCF diet for your child with autism
It would be careless to describe this as simple and easy to do. It is of course not impossible - and there are numerous positive reasons to try it. But here are a few things to consider:
The diet is extraordinarily strict, must be adhered to 100% for full (or any) benefit, and unless the entire family joins in, separate kitchen dishes, cutting boards, utensils, toasters and the like must be purchased to avoid cross-contamination.
Children with autism can take “picky” to a whole new level. Some will only eat one type of textured food, for example.
It can be expensive. Specialty GFCF foods can cost more than typical foods of the same type.
Finding products can sometimes be challenging - though this has been changing rapidly with the rise of the popularity of gluten-free diets.
Replacing vital nutrients is going to be important. While no one is arguing that dairy is necessary, it is a source of calcium, protein, and vitamin D. You will need to ensure you are replacing any dairy with other food choices that will provide the recommended allowances.