It’s September 13th, so let’s talk celiac awareness.
On second thought, I’ve already talked enough about celiac awareness. So let’s skip the talking and just draw it.
Currently, celiac awareness looks something like this:
Lots of people think they know a lot about celiac disease. When you say you have it, they nod knowingly, and you feel warm and understood and accepted and then—BAM—they hit you with, “It’s like lactose intolerance, right?”
The hopeless among us feel we haven’t made much progress in this regard. To them, ’tis the best of times and the worst of times: the age of gluten-free product development, but the age of celiac disease ignorance. As proof, they point to a Google Trends graph (below) illustrating the difference between growing interest in “gluten free” and static interest in “celiac disease.”
It’s…not a pretty picture. But, if I may remind you, Google has not existed forever (I know, it shocks me, too). The graph captures data only from 2006ish on. And all the anecdotal evidence I’ve heard tells me that, before then, celiac awareness was even worse.
Twenty or thirty years ago, for example, the original diagram may have looked more like this:
Or even, maybe, like this:
I mean, we’re talking the banana diet, and the widespread belief—by doctors!—that one can “grow out of” celiac disease. People used to know NOTHING! Now, at least they know celiac disease is a gluten allergy. (Wait…hang on…is that…?)
Sure, you still hear stupid things said about celiac disease. And, if you’re anything like me, it makes your blood boil. In the interest of our collective blood pressure, though, I suggest that we calm down. We can’t get worked up over every instance of ignorance, or we’d never have time for anything else.
Let’s ask ourselves: In the end, does the general public’s knowledge really matter, as long as the folks involved know what they need to know? Maybe not.
Still…those folks have some awareness issues, too.
On good days I think we’re here:
…but on bad days I think it’s more like:
…with chefs and waiters off in their own little galaxy far, far away, where high temperatures cook off all the gluten and just a little can’t possibly hurt.
I don’t mean to diss doctors, or researchers, or other people with celiac disease (though we all have our brain-fog moments). I don’t even really mean to diss restaurateurs. I just know that it’s hard to keep up with everything there is to know about this disease. It’s only just beginning to be well researched, and misinformation gets picked up and passed on in endless games of telephone with no winners.
Plus, it’s hard—for all of us—to understand precisely where others are coming from. Our personal experience walls us away. Even other people with celiac disease don’t necessarily get me, and vice versa. There’s so much variation in this disease; there are so many unknowns.
On really bad days, I feel completely alone.
Feelings aside, though, I’m not in fact alone. I have my family, friends, and colleagues who have worked to raise their own celiac awareness; my whip-smart, fellow celiac sister; my doctor at the Columbia University Celiac Disease Center; and, of course, all of you in the celiac/gluten-free online community.
I’m not alone, and you’re not alone, either—at the very least because you have me. And if you and I keep on standing up for ourselves, speaking the truth, and supporting each other, then one day—I’m confident—we’ll end up with this:
I’ll see you there.
Happy National Celiac Awareness Day, y’all. I hope everyone you meet today knows the difference between “gluten-free” and “vegan,” and that you don’t feel alone for a moment. If you’re non-celiac gluten-sensitive or have allergies, other food restrictions, or other invisible illnesses, know that my support extends to you, too.
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