No one knows anything about celiac disease. Do you care?

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:

true things about celiac vs things the public thinks are true - venn diagram

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.”

Google Trends: searches for gluten free and 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:

celiac disease awareness venn diagram - past public perception


Or even, maybe, like this:

 

celiac disease awareness venn diagram - ignorance

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:

current understanding of celiac disease by doctors, patients, researchers


…but on bad days I think it’s more like:

celiac disease awareness not shared by everyone equally

…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.

feeling lonely with celiac disease or on gluten-free diet

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:

a celiac-aware world

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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18 thoughts on “No one knows anything about celiac disease. Do you care?

  1. Casey says:

    I absolutely LOVED this post! I definitely agree that while the public likes to think it knows about celiac disease, often people will ask me if I can just “take off the bread and eat the filling” since they don’t want to deal with my dietary needs. Rollercoaster of happy and sad, sister! I’m optimistic, though, that one day people will be truly educated about celiac disease and the world will be a better, safer, yummier place for all celiacs! 🙂

  2. Laurie C says:

    Happy Celiac Awareness Day to you and your brilliant sister!

  3. Mary Kate says:

    I don’t find it all that depressing that the general public doesn’t understand. I didn’t understand veganism until I tried it, and I didn’t understand food allergies until I had to. As I watch the people around me learn more and more because of me, I almost feel bad about it. I mean, I know stuff I don’t really want to know about food and what is in it.

    But, I find it horribly depressing that MEDICAL PROFESSIONALS don’t get it, given that we turn to them for help, and that food producers and restauranteurs don’t get the basics. They don’t need to understand the nuances of celiac or allergies to learn good preventive techniques for cross-contamination.

    In honor of Celiac Awareness Day, I sent off my DNA test which should help determine whether I could have celiac or whether it’s just serious gluten sensitivity. Knowledge is power.

    • mellieann85 says:

      Where are you doing DNA testing through? Just curious.

      • Mary Kate says:

        I went with 23 and me. The Ancestry one (and there’s a third) are both supposed to be just as good.

        • Molly says:

          How long does it take to get results back?

          • Mary Kate says:

            It took a little over a week to get the kit, and they say it takes up to two to get it processed into the lab. AFTER that, 4-6 weeks, and apparently (I’ve been cruising the message boards, as I have no patience), you will likely get the results in at least two, if not more, phases — health stuff first, then geneaological stuff.

            My #1 interest is in the specific celiac gene, but the health and ethnicity parts will be really interesting given that I have a very limited family history. It takes a long time to hear all those stories, and I only know half my bio family and only for the past 2.5 years.

          • Mary Kate says:

            Forever? I don’t know for sure, but 2-4 weeks just to log it in at the lab. I think it’s a couple of months. I did read it, but the impatient part of my brain decided not to remember.

  4. Reblogged this on allergictolifemybattle and commented:
    A great post by Molly from Sprue Story.

  5. thglutenfree says:

    This is really cool Molly! And I think we can in fact expect more awareness in spite (?) of the fad. After all, coeliac prevalence has increased by 400% in the last 50 years with more to come, and all those “new” coeliacs will no doubt want their piece of the pie. Luckily for them there are a few celiactivists like you out there to keep them entertained and make them funky venn diagrams 🙂

    -Kristine

  6. I love your bubble charts! Funny and clever as always 🙂
    -Dana

  7. mellieann85 says:

    That little alone venn diagram is how you feel at a work potluck and there is NOTHING I mean nothing you can eat. And everyone is chowing down except you. Maybe there should be a diagram for how much people care to know. LOL.

  8. […] forgetting the priorities of others. Put your advocacy skills to the test this month. Though National Celiac Awareness Day is behind us and our month is a ways away, there’s plenty of work for you to do in the […]

  9. rachelmeeks says:

    As always, fantastic writing. Loved the graphs – I don’t think anyone would foul you for making your circle bigger than the others. 😉

  10. […] fooled a few people on April 1st, got romantic on Valentine’s Day, and drew pictures on Celiac Awareness Day. I shared a cooking mishap or two, plus a success here or […]

  11. […] you, for example, want to see a more gluten-free world? What about a peaceful world, a happy world, a just world? Regardless, take a page out of […]

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