What parents need to know before getting their child started on the gluten-free, casein-free diet.
Medical literature may not currently support the gluten-free, casein-free diet as an effective treatment for autism spectrum disorders (ASDs), yet there is anecdotal evidence from parents that their child’s symptoms improve on the diet.
The Interactive Autism Network (IAN), a project collecting information online from families of children with ASDs throughout the U.S., reports, “more than 16 percent of participating families are using special diets to treat their child’s autism.” Of all the diets tried, the gluten-free, casein-free diet is the most common.
While the diet can be difficult to follow, relatively expensive, and a significant time and resource commitment for the family, many parents believe it is a low-risk option and are willing to try it. If you or someone you know is considering a dietary intervention for a child with autism, it is important to know the facts up front and make the decision in conjunction with your child’s healthcare team.
Dietary intervention should be under the supervision of healthcare professionals. “Mostly therapists, teachers and other families tell parents about the gluten-free, casein-free diet,” says Kelly Dorfman, MS, licensed clinical nutritionist and author of “What’s Eating Your Child?”. According to Dorfman, recommending a gluten-free, casein-free diet “depends on the child’s specific history and clinical picture.” While input from other parents is important for practical purposes, only the child’s medical team knows their full history and special needs.
“Don’t put your child on a gluten-free, casein-free diet until you’ve had a discussion with your health professional first,” says Ritu Verma, MD, Section Chief of Clinical Gastroenterology and Director of the Center for Celiac Disease at The Children’s Hospital of Philadelphia. “It’s important to have a baseline checkup and any lab work done first, so [the physician] can have an organized approach.” Your child’s doctor may want to test for celiac disease, food allergies and other conditions before starting a gluten-free, casein-free diet.
It’s critical to work with a registered dietitian who has experience with ASD patients. A gluten-free, casein-free lifestyle restricts many foods for children who already have a limited diet. A dietitian can help tailor a gluten-free, casein-free eating plan of foods and supplements that meets your child’s particular nutrition needs and taste preferences. Feeding therapists can be helpful for patients with complex feeding issues.
According to Elizabeth Strickland, MS, RD, owner of ASD Nutrition Seminars & Consulting, it is important to determine up front if the dietitian has experience working with the ASD population and how confident they are addressing common issues, such as feeding problems, gastrointestinal disorders and food sensitivities. It’s also important to determine your comfort level about whether the dietitian supports the diet with foods alone, or recommends nutrition supplements, herbs or nutraceuticals.
Determine the family’s ability to support and commit to the gluten-free, casein-free diet. “Parents have to be committed to follow the diet 100 percent for at least three months,” says Verma. “100 percent dedication enables a better diagnosis if the diet is working.” Many health professionals agree, as it takes time to adapt to the diet and then determine whether symptoms are improving or not.
Every adult who takes care of your child should be informed about the dietary intervention and educated about how to follow it. Dorfman notes that common hurdles to following the diet can be extended relatives who don’t understand the diet, schools unable to support the diet and situations where children are bouncing between two households due to divorce.
Most families find outside support to be invaluable. Speak with other parents who have tried the diet for their child and enlist in a support group. They will be essential to understanding and coping with the day-to-day realities of implementing the diet and can guide you toward finding helpful and reliable resources (see “Resources” on p. 34).
Come prepared to the first appointment. Write down your child’s symptoms, as well as food preferences and eating habits. Be as thorough and specific as possible. “Children with ASD tend to also have Sensory Processing Disorder, which makes it difficult to handle any type of change, especially in their acceptance of new foods,” says Strickland. “The child with ASD may not even look at the new food, much less touch or taste it.” This is important for your child’s health professionals to know so they can make an informed decision about whether to initiate the gluten-free, casein-free diet, as well as make referrals to other professionals who can help with feeding issues. Most physicians and dietitians won’t recommend the diet for a child with an extremely limited diet.
A thorough eating assessment enables the dietitian to understand food preferences and tailor an eating plan that maximizes nutrition, especially nutrients commonly found in gluten- and casein-containing foods that will be lacking once on the diet. For example, “It is critical to assure that prior to eliminating cow’s milk, the child is accepting another milk alternative, such as calcium- and vitamin D-fortified almond, rice, potato or coconut milk,” says Strickland.
Manage expectations. Experts warn parents to manage their expectations, as not all children respond to the diet.
“Autism is a final destination,” says Alessio Fasano, MD, director of the Center for Celiac Research at Massachusetts General Hospital. “Many theories for the pathway to that destination are conceivable. If 20 percent reach that final destination through gluten and/or casein sensitivity, then dietary intervention may improve symptoms.”
Symptoms can get worse before getting better, so it’s important to stay the course. According to Verma, sometimes behavior temporarily worsens not because the diet isn’t working, but because you are denying the child their favorite foods or they are experiencing painful constipation due to a diet low in fiber which should then be addressed with the dietitian.
“[Implementing the diet] should never be at the cost of the child’s health and the family’s quality of life, especially if you aren’t seeing success,” says Verma. “If the diet is too overwhelming and you aren’t seeing improvements, then go off of it.”
Verma and Fasano agree that improved attention, learning and communications is the primary goal of dietary intervention, but improvement in gastrointestinal symptoms is important, too.
Scientists are working feverishly to better understand how dietary intervention may play a role in treating ASDs. According to Fasano, the areas of research critical to broadening our understanding include those determining gluten sensitivity biomarkers, the composition of bacteria (good and bad) in the gut of children with ASDs, and the biological pathway(s) in which food(s) may cause autistic behaviors. While we wait for the results to unfold, parents interested in trying the gluten-free, casein-free diet should work closely with their child’s medical team to determine if it is right for their family.
Rachel Begun, MS, RD specializes in gluten-related disorders. She helps consumers safely navigate a gluten-free lifestyle and works with corporate clients to anticipate and leverage the burgeoning trends associated with food allergies and intolerances.