Wednesday, July 21, 2010

The gluten free trial - order in my kitchen!

I started the kids on a gluten free diet the day they got back from camp. No wheat, rye, or barley. That means no tin soups, bargain cereals, donut shops, free wiener roasts, pizza parties, baking from the snack table after church, unless I bring all my own homemade/overpriced hot dog buns, wieners, pizzas, and baking.

(I'm not really a baker, but I have to admit the gluten free cinnamon buns turned out better than most things I've made. You can find the recipe here: The dough (batter) is so sticky that I had to roll and lift the buns using plastic wrap, and the final version looks lumpy, but they taste oh so melt-in-your mouth good.)

This is so unlike me. People have been telling me for years that if only I'd get rid of food colouring/artificial flavours/preservatives/gluten/dairy that autism and ADHD would disappear and my family would walk hand-in-hand into the sunshine. And I got mad.

And I got doctors. I've been doing the medical thing for the past 5 years, particularly this year, since we've had weekly access to a child psychiatrist (who once played a Meti girl at Lower Fort Garry and has a twinkle in her eye like she still could). As the diagnoses piled up, it took me a while to get comfortable with her (Why do you see so many things that I'm not ready to accept yet?); once I did, I've come to trust her judgment.

But even twinkly, trustworthy psychiatrists make mistakes. Because with drug trials, no one knows the right answer till the test is done. We've had some frightening, frustrating (thankfully - temporary) side effects.

We're looking for something to "loosen the glue" of perseverations/fixations. ADHD medications can help kids concentrate, but they don't tell kids what to concentrate on! Kids on the spectrum feel more relaxed when they can draw/talk/learn/think/read about their own interest. But in order to feel successful at school, K. has to spend a least some time drawing/talking/learning/thinking/reading about what the teachers and classmates have in mind. He want to fit in and feel a sense of accomplishment, but that world-altering super ion suit will not wait in the corners of his brain until home time! It begs to be drawn....on a Dixie plate or paper towel if necessary!

The medication options are antidepressants, which can cause suicidal thoughts or aggressive behaviour, or atypical anti-psychotics, which can lead to tick disorders, high cholesterol, obesity, diabetes, cancer, breasts (!), and just generally: death. So either you want to be dead...or you are. Okay, I'm exaggerating: the serious side effects are very rare, usually only appear at high doses or over longer period of time, and most of them (other than the tick disorder and, of course, death) are reversible. But it doesn't keep a mother from lying awake worrying about them.

Lately, I've been meeting more people who've asked, "Have you tried gluten free?" One was a therapist and the sense I got was: if you're willing to take all these medication risks and expenses, why aren't you willing to try a little risk-free inconvenience? The other was a parent whose child was diagnosed overseas, and the leading autism specialist there told her to "Take him off gluten and come back in three weeks." It made a world of difference in the child's behaviour and character. Since then I've read books about kids who stop screaming and start making eye contact for the first time after a few weeks off gluten. Lately, autism has so crimped our quality of life, that having to carry my own cookies or hot dog buns in my purse feels like nothing!

Now, I'm not becoming a barefoot, bra-less, granola-chewing hippie (although, come to think of it, they were pro-drugs, weren't they?). I still believe medication can be safe and helpful. I'm just not ready to try another option on the antidepressant/anti-psychotic list. And I'd like to be able to tell the "Have you tried gluten free?" people: "Yes, and it was the best thing (or the dumbest waste of time) ever!"

I'll let you know which in a few weeks. By then I may be guilty of contempt of kitchen. If you need me, I'll be smothering myself in rice flour and cinnamon....

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