What is it like to have celiac disease?

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Emily Kaufman, Distributing GlutenTox in N. America – gluten detection kits for home and ind…

On the bright side, having celiac disease means being part of a large, growing community. It’s often an instant connection with other people, because they, or someone they love, also avoids gluten (whether diagnosed as celiac or for other reasons).
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I love my work, but came to it in a very roundabout way. One thing’s for sure, I wouldn’t be doing what I do (selling a gluten test kit called GlutenTox here in the US) if I hadn’t been diagnosed with celiac disease in high school. And working within the community has its own rewards: I’ve been put in contact with a number of inspiring business owners, and I also get to hear from a fascinating group of clients. And I suspect I’m better at my job because in many ways, I am my own customer; gluten-free food is just as important to me as it is to them.

Many people feel that celiac disease has allowed them to become closer to their food, because there is more of an incentive to eat whole foods and avoid prepared / processed items. I can’t say whether or not this is true for me; even as a teen I liked to cook and I wasn’t much of a fan of fast food.

On the negative side, having celiac disease also means frequently being afraid that you are doing irrevocable harm to yourself. Eating can become a bit of a roulette game. It’s not as terrifying as an allergy that induced anaphylactic shock, perhaps, but it’s scary nevertheless. While it’s tempting to compare gluten intolerance with lactose intolerance, the one has a much greater potential to do lasting damage than the other.

I’m not as instantly-symptomatic as many other people with celiac disease, insofar as I cannot always pinpoint the time/source of an accidental glutening and my symptoms are less GI than energy-level related. So for me, it’s less, “If I eat this and there is an accidental crumb in it, will I be in bed for a week?” and more, “Am I inadvertently exposing myself to something that could lead to cancer/osteoporosis/infertility/a schizophrenic child/etc etc etc?”

It does sometimes get tiring needing to ask a million questions when out to eat, and I haven’t had a piece of proper NY pizza in about 10 years. But in general, at least in my experience, having celiac disease is really not so bad.

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