it's May; be AWARE of Celiac Disease
It's taken me over two years, a half-dozen aborted rants and a year of posting the highs and lows of my gluten-free experience, but I can finally sum up what's wrong with having Celiac disease today: ignorance.
The average person I meet has barely heard of Celiac. Gluten free food is something that makes them think of sawdust bread and militant veganism, even neither of those things makes any real sense. In movies and TV, gluten free is reserved for especially picky, high-maintenance characters. It's something you find at Whole Foods at utterly disgusting prices. It's a fad, like Atkins or those people who live on lemon juice and cayenne pepper for weeks at a time.
And the thing is, it's hard to change that opinion. I'm very open about my disease—I'll talk to anyone about it. I'll explain my journey in great detail, from those first wrenching stomachaches at 15 to my second gastroenterologist saying "Well, it seems like you have a bit of Celiac!" when I was 20. I'll go into detail about what's gluten free, often citing the much-overlooked soy sauce. I'll point out gluten-free-friendly restaurants and stores.
But I'm only one person.
The other day, my roommates and I were invited to dinner by a couple of our friends. All of these people have been very supportive of me and they've each individually gone out of their way to make sure I eat safely. One of these friends posted on Facebook that he was looking forward to a gluten-free dinner, and immediately his friends started in with the comments. One person said "So, veggies?" while another was even more succinct: "Vomit!"
These people don't know me. They didn't know why their friend was going to have a gluten-free dinner. Maybe they aren't ignorant about Celiac disease, I don't know. But I doubt they were trying to be deliberately cruel to me, I think they were just unaware of how hurtful their words were.
When I tell people I have Celiac, I get a wide variety of responses. My least favorite is the ever-popular "I could never do that!" It's supposed to be admiring, I think, but it suggests that my journey has been relatively easy. It overlooks the struggles and the pain I've experienced.
All I'm saying is: be aware. Think before you speak, or type. Remember that you don't know what somebody has gone through. When you meet somebody who eats gluten-free, realize that they might have Celiac and it might not just be a fad. Understand that they might still be struggling with the changes in their life, that they might not be okay with it as they seem to be.
You don't have to go out of your way to buy them food and drinks (though it's always appreciated!) Just remember that Celiac Disease exists. We didn't choose this, we were born with this, and we were just as devastated as you would be if it happened to you. Learning to live without gluten isn't easy, and it's that much harder when it's sudden and determined by your genes rather than your desire.
I've experienced lots of "Awareness" months before, but I've never properly understood what they meant. Now I do. I'm not asking you to try to cure Celiac (although that would be GREAT) or to start baking gluten free. I'm just asking you to be aware.
If you want to learn more about Celiac, I suggest starting with the National Foundation for Celiac Awareness. My blog is at Gluten Free, So What? and this article was inspired by a post on there.
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