I’ve helped kids with autism use nutrition supports, including gluten free diets, since 1998.
Some twenty years later, it still isn’t a standard of care to get a thorough nutrition screening with an autism diagnosis, and it definitely should be. It’s crazy that there is any question at all about the efficacy of this tool. But unless your doctor knows how to do the correct lab work up front – and they quite often don’t – you may be doomed to blow it, or not know in the first place how a GF diet may help.
Gluten free diets can be pivotal for autism, if, and this is a big if, you do it right. It can be daunting, so go for professional assessment and guidance, just like you do for any other treatments and supporting therapies. You don’t pick your kids’ psych or seizure meds off the web, or craft your own OT program; why would you do that for a complex nutrition piece? Somehow, many families still design their own medical nutrition intervention, and may miss key pieces.
And no wonder: None of the usual care team members for kids with autism get training in applied nutrition, nutrigenomics, or how to do an autism-specific nutrition assessment (or any nutrition assessment). Who do you ask? Neurologists, psychiatrists, developmental pediatricians, occupational therapists, feeding therapists, and behavior therapists are not nutritionists or dietitians. Even many dietitians and gastroenterologists in hospital settings, per feedback from my client families, don’t know what to tell families about this intervention. If they’re not telling you to explore nutrition intervention for a child with autism, it’s not because there’s “no proof” that it helps. It’s because they probably don’t know any better.
There’s no shortage of opinions and (poorly designed) studies touting that a gluten free diet, or nutrition support in general, is not a worthwhile measure for kids with autism. Much of this science is just plain badly done. Nutrition is not easy to research, because we’re talking dozens of moving parts: Vitamins, minerals, calories, protein sources, gut metabolome, gut micro biome, developmental status, food allergies and sensitivities, iron status, methylation impairments, mitochondrial disorders, and growth status to name just a few. Controlling all these variables is difficult. Most studies I’ve read about autism and nutrition simply don’t control or evaluate these variables very well, if at all. Here’s one bad example that got wide press, and another, here.
If you want to try gluten free diet, here’s a few tips below. I also strongly encourage you to read this book for details on how to get started, how to avoid pit falls, how to engage your care team, and much more.
- Get a blood test for anti-gliadin IgG antibody (not a celiac blood test) with your pediatrician or gastroenterologist. This will tell you if your child’s immune system reacts to gluten in a way that has potential to affect the brain.
- See this book to learn about other key lab screenings before you begin.
- You will have to eliminate all dairy and soy protein sources from your child’s diet as well as gluten. See this book to learn how, and why. If you don’t, you will not see much if any improvement from eliminating gluten alone.
- Get help with recipes, cooking, and shopping. I help families navigate this. There is a gluten, dairy, and soy free solution for just about everything your child is eating now.
- Many parents don’t realize that dairy food includes yogurt, any cheese from a cow (cream cheese, Parmesan, mozzarella, etc), butter, cream, buttermilk, kefir, raw milk, goat milk/yogurt/cheeses, lactose free milk products, ice cream, sherbet, cream soups or chowders, many sauces and dressings (Ranch), and any processed foods or baked goods that contain any milk ingredients. All of that has got to go, for a successful gluten free trial. If you’re breastfeeding an older child (over age two or three years), even that milk source may arrest progress with this intervention.
- You will have to replace all foods removed with foods of equal or higher nutritional value. If your child relies on dairy protein all day, you will have to work through measures to bust this picky pattern, and find different proteins. Read this book on milk-addicted kids for more help.
- Fix other nutrition deficits, especially weak iron status, which is common with undiagnosed gluten sensitivity. Have your doctor check your child’s ferritin level; it should be in a functional range of 40-60 (lab range will be reported as “normal” when ferritin is as low as 10. This may be “normal” but it is not healthy.)
- Fix your child’s gut micro biome; assess it professionally, and have your provider guide you to optimize absorption and elimination. Your child may need supports like digestive enzymes, probiotics, or herbal tools. I provide screening with stool tests in my practice as well as detailed guidance on how to use corrective supports.
If you haven’t yet engaged a comprehensive nutrition intervention for your child with autism, let’s talk! For many children, when done thoroughly, and with compliance on your part, you may be surprised at how your child’s functioning can improve.