It’s largely about the pain. Or rather, the lack of pain.
Here’s what lead up to our decision: Shortly after our daughter was diagnosed as being “on the spectrum”, I (Roland) attended a meeting of parents of ASD children. During a break in the formal presentation, one mom told me about an experience that stuck with me. Her son, in his mid-teens, really enjoyed playing basketball after school. She recounted that one evening the previous week, after he had come home from playing a game, she noticed that one of his fingers was red and swollen. But he told her not to worry about it, because it didn’t hurt. The next morning, the angle of the finger clearly indicated that it was broken, but her son still maintained that it didn’t hurt. Up to the hospital they went, where she said that the emergency doctor gave her a severe tongue-lashing for not bringing her son in the previous evening…which she said she obviously would have done if he had indicated that he was in pain.
Fast-forward about a month. Linnea and I had just returned from running an errand in our car. I helped her get out of her car seat, and closed the car’s rear door. As I walked past the front bumper of the car, with Linnea following, I heard a loud “THUNK” behind me. Immediately I spun around and saw that Linnea had walked into the door mirror, hitting it so hard with her little head that the strong detent holding the mirror in position had released, allowing the mirror to spin sideways.
She should have been sitting on the ground, crying in pain, but she was just standing there, appearing to wonder what had just happened. Thinking about it later, Catharina and I realized that we had never heard Linnea cry from pain. We had heard crying for various emotional reasons, but never from pain. Now, we think we know why.
Nutritionist Julie Matthews writes in her book Nourishing Hope for Autism: “Poor digestion contributes to…the production of opiates from food that affect brain function.” Later in the same book, Ms. Matthews recounts that gluten and casein “form morphine-like substances in some individuals called caseomorhpin and gluteomorphin…The outcome is much as if the child were on opium or morphine all day.” We’ve read similar information in several other highly credible books.
I try to imagine what it would feel like to have an opiate coursing through one’s veins ALL THE TIME. Not only would one feel little or no pain, but it might be pretty difficult to make much sense of one’s environment, or even to care about it. And what about learning something new? Or even being able to speak? It just might not happen.
Linnea has been gluten-free (GF) and dairy-free (DF) for nearly 4 years. It took over six months for us to notice a difference in her behaviour. Now, when she has an injury, she lets us know. She cries, if it hurts badly. But the terrific thing is that she speaks. And she asks the most wonderful questions! On the extremely rare occasions when she’s accidentally consumed food that contains gluten, her behaviour became “loopy”, which some might describe as “stoned”. And her reaction to dairy? Extreme hyperactivity. We try very hard to avoid these situations.
So…what foods contain gluten, and what foods contain casein? Gluten is the main protein found in wheat, as well as in several other grains such as rye, barley, and many “ancient grains”. Casein is the main protein found in milk and in most other dairy products. Wheat and dairy products are found in a HUGE range of food items, many of which came as a surprise to us when we became very serious “label-readers”.
In order to simplify meal times, we have mostly tried to take a family-wide approach to gluten-free and dairy-free. We have finally found good GF-DF bread for Linnea. And acceptable dried pasta products. We all eat the gluten-free pasta. But while Linnea eats store-bought gluten-free bread, Catharina and I eat a whole-wheat bread that we make. That, and the occasional beer is about the only gluten in our lives.
And dairy? We’re basically done with it. There are many excellent non-dairy substitutes for cows’ milk. Ditto for butter.
We often buy cheese, and sometimes bakery products, when we have company. Obviously, Linnea doesn’t get to sample them with the rest of us, so we try hard to have a special GF-DF treat on hand for her. Other than on those occasions, though, the easiest solution for our family is to leave the gluten and dairy-containing products on the shelves at the grocery store.
We’ll be interested to hear your experience with a gluten-free and dairy-free diet. Did it change your child’s behaviour? What’s the most challenging part of the diet for your family? What works and what doesn’t work?