The topic of gluten avoidance is a separate discussion from one about processed food or eating carbohydrates. Gluten is far more insidious than that, especially if your child is on the autism spectrum.
When our daughter was diagnosed with ASD some five years ago, my wife very quickly came across research about the benefits of a gluten-free and casein-free diet for kids on the spectrum. We immediately implemented this diet via a cold turkey approach and soon our daughter was diligently following the diet, which got even stricter over time with the virtual elimination of sugar.
We also stopped using the word diet by the way, which has connotations of it being short term and a sacrifice, both of which can lay the foundation for failure. We now talk about food choices and a healthier lifestyle instead.
Within weeks of eliminating gluten we noticed that our daughter was more present and her kindergarten teachers asked what we had done, as her energy and her interactions improved considerably as did receptive language. Her stools improved; gone were the diarrhea and accompanying rashes and her moods were more balanced. And whilst she continued at that stage to have meltdowns, they weren’t quite at the extremes they once were.
The problem with the food as medicine approach is that it takes time. In a world that has taught us to expect that a pill will make a symptom subside almost immediately, having patience to let the body return gradually to its normal healthier state is not easy. Using food as medicine takes time and you must trust the process. But if you are feeling sceptical, there is plenty of research that shows the importance of a gluten-free casein-free food choice for people with ASD.
A recent paper in the Open Access Journal of Human Nutrition (Adams, 2018), studied 67 children and adults (3-58 years) with ASD and found a significant improvement in nonverbal IQ, autism symptoms and developmental age with use of nutritional and dietary intervention based on a gluten-free, casein-free, soy-free diet. There are many other formal studies cited in that research that have reached similar conclusions.
There is a lot of confused messaging around gluten (and casein). Many dietitians will tell you that gluten is fine unless you are celiac. I’ve even heard one say that unless you are celiac you are depriving your body of nutrition by avoiding gluten products. But anyone who says this to you simply does not understand the impact that gluten can have on kids with ASD (and many other chronic illnesses).
There have been several studies on the effects of gluten on children with autism. One large study (Cade, 2000) of 150 children with ASD, found that 87% of them had IgG antibodies (ie an immunologically mediated sensitivity) to gluten versus 1% in the non-ASD control group (and 90% had IgG antibodies to casein vs 7% in the control). What does that IgG sensitivity mean? It means that if you have a child with ASD even if she is not a celiac, the immune cells in her body have identified the gluten molecule as a pathogen (ie one of the bad guys, like a virus or bacteria) and when the immune cells detect gluten molecules, it sets off an immune response that could ultimately become autoimmune (ie effectively where the immune system malfunctions and starts attacking the body’s own cells).
It is well known that gluten opens up the tight junctions of the gut wall. Gluten causes leaky gut. This enhances the probability of the body launching a full and negative immune response to foods, especially gluten. Once the gut junctures are opened and gluten leaks through the gut lining and into the blood stream, the body’s immunity cells will more readily recognise and attack the gluten, as it is a protein that should be in the gastro-intestinal tract and not in the blood.
Four other studies (Adams, 2018) have found that children with ASD had more hypersensitivities to food allergens than neuro-typical children and those sensitivities may be related to increased intestinal permeability (ie leaky gut).
When the intestinal immune system does not function properly, many white blood cells accumulate in the inner lining of the gut. White blood cells then release chemicals that lead to inflammation. That inflammation of the inner lining of the gut can cause diarrhea, which is the most common symptom of the autoimmune conditions ulcerative colitis / IBD, which unfortunately many of our kids seem to also have. There are studies that suggest a correlation between severity of autism symptoms and gastrointestinal issues.
Gluten response is not dose dependant. The severity of a reaction to gluten is not proportional to the amount consumed. That is, ingesting a little bit of gluten does not mean a little response will ensue. The body’s response to gluten is more like flipping a light switch- a little bit of gluten can and will cause a big inflammatory response. In fact, Dr. Vojdani published in 2014 a study showing that the TNF alpha (an inflammatory cytokine) mediated inflammatory response can take a very long time to extinguish- as long as 10 months from the brain.
As I have said, my daughter’s food choices are pristine when it comes to avoiding gluten (and other things). But earlier this year, I made a huge mistake and bought some grilled fish from a seafood shop when we were on a holiday at the beach. I didn’t quiz the cook (fatal error) and just assumed the fish was plain grilled fish as it was described on the menu. What my daughter actually ate was a piece of grilled fish lightly dusted in flour. Just that one bit of gluten for dinner in nearly 4 years of gluten free dining, resulted in an explosive function that came on so suddenly she didn’t have time to get out bed before all broke loose (literally and figuratively). She was sick all night and only started to stabilize after a few days. All from just a little bit of lightly dusted fish. I would hate to think what a slice of pizza would do to my favourite little girl.
So when you re-frame gluten from being just something that’s associated with wheat and processed carbohydrates that are not part of an ideal diet, to it being a protein that more than likely will cause immune and possibly autoimmune issues with your child, you have to come to the conclusion that just a little biscuit or slice of bread now and then is never okay. Just like you would not give one single nut to a child with a nut allergy, nor should you give gluten to a child that will have an inflammatory response that may take many months to eliminate, and is likely to have an IgG antibody to gluten, which based on the study in Nutritional Neuroscience (Cade, 2000), could be as high as 87% of children with ASD.
Written by: Justin Goddard
Disclaimer: Neither Justin Goddard nor Healing Autism Academy LLC are dispensing medical advice. Information is without warranty. You are encouraged to make your own health care decisions based upon your own research and discussions with your qualified health care professional.
Adams, J. B. (2018). Comprehensive Nutritional and Dietary Intervention for Autism Spectrum Disorder – A Randomized, Controlled 12-Month Trial. Open Access Journal of Human Nutrition, 43.
Cade, R. e. (2000). Autism and Schizophrenia: Intestinal Disorders. Nutritional Neuroscience, 57-72.