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Autism: A Week of Wheat

10 Aug

For about two months I was completely off of gluten, though I continued to eat oats as they didn’t seem to have the same effect on me. The plan was to try wheat again before my summer camping trips so that I would know for sure if this was an issue for me.

But then my dog died, and I knew that time wouldn’t make for an accurate test, for the pain was deep, and my functioning was low. Then we got a new dog, and that time, too, wouldn’t reveal the true effects of wheat on my system. I was very anxious, still in a lot of pain, and still not functioning well.

Knowing it was likely a strong issue for me, I tried for weeks to plan gluten free foods I could eat while on my camping trip – but as I said, my functioning was low. I am not even sure I could have done it when I was well. Food has always been a struggle for me to begin with. There are always multiple things standing in my way:

  1. I cannot prepare meals, and struggle to eat at the best of times, when with other people.
  2. Where we go, there is no running water (we bring water) no electricity for cooking (only solar panels for charging devices), just a couple of propane fridges to store everyone’s food (a few years ago, we didn’t even have that. I am thankful), and a barbecue where meals are prepared (often communal, and since I usually can’t eat what others are eating, I have to make my own, which I can’t do with people around, or on propane stoves.)
  3. I am not only gluten free, but am also very allergic to eggs (a staple camping food, which always scares me), intolerant to dairy, allergic to Kraft dinner (another staple, and even the smell leaves me very nauseous) and don’t eat meat, pasta, or mushrooms. Plus, processed foods very often leave me sick immediately after eating them.
  4. When I am hungry, I am strongly prone to meltdown, and can no longer think. The hungrier I am, the less I can tolerate food, and the lower my functioning is. So to leave me to get through that on my own is a bad, bad, idea – yet that seems to be the natural solution for people. “She’ll eat when she is hungry,” they say. No! I need productive help to get through it, and if I am already hungry, I can say that will be hard. Best not to go there in the first place. And no, I cannot help it or avoid it despite my very best attempts at planning.
  5. I make much of my gluten free/vegan foods from scratch at home, when I am alone. But they don’t store well, defrosting (or even expecting to find freezer space) would be very challenging, and it is likely (being communal meals) that I wouldn’t have the space to cook even if I could cook with other people around (which I can’t.)

Eventually I came to the conclusion that I would have to eat both meat and wheat during my nine days away. Even then I have had issues. Here are the results:

  • day 1 – really bad heartburn, with some extra trouble getting to sleep
  • day 2 – increased fears and controlling tendencies towards what other people were doing with food
  • day 3 – complete meltdown, unable to think/function/eat when others chose beans and wieners for lunch; cried for over an hour, massive headaches all day, bad heartburn, trouble sleeping
  • day 4 – continued controlling tendencies, inability to think clearly, anxiety around food, struggles with emotional stability, fuzzy thinking, full meltdown in bed when everything (hair, clothes, skin, blankets…) severely irritated me – my husband left to sleep in a camper, and I had to drug myself to sleep.

All of these things continued and grew worse as I ate more and more gluten (since it was present at nearly every meal, and often the other foods were even worse for me.)

This is not likely something ‘they’ could test for. I don’t believe I have Celiac disease, and if I didn’t have the language to express this, other people would likely not make the connections. Yet it is a very, very real issue for me.

Vacation July 2016 014

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