Tag Archives: community

R-E-S-P-O-N-S-I-B-I-L-I-T-Y

Find out what it means to me…over at My Life With Food Allergies, where I just contributed my first post. If you haven’t heard yet, it’s a new website run by Living Without magazine. It features the work of gluten-free and food-allergic writers from around the blogosphere.

My post is about our rights and responsibilities as (reluctant) members of the food-restricted community. Do allergies or gluten sensitivity give us special responsibilities? And is one of those responsibilities to avoid making the rest of the community look bad? I touched on this topic way back when in this post about Dean McDermott, but now I’ve reopened the case. I hope you’ll check it out and share your own opinion on the matter.

While you’re there, take a peek at the other posts—there’s some great stuff on the site. It also has a nifty star ranking system, so you can objectively let me know how much you love the post in a single click.

Check out the post now HERE.

It’s the responsible thing to do.

picky eater who doesn't want to eat green beans

Do we have the right to remain “picky”? You tell me!
Photo © Clay Bitner | Flickr

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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. 

If you liked this post, please share.

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Why I Celebrate Celiac, and you should, too (plus: giveaway!)

In my last entry, I asked how I should celebrate my newly low antibodies. (The response was nearly unanimously in favor of alcohol—but I’ve kept my perch on the wagon for now, thanks very much.) This post is about celebrating something just a little different: celiac, itself.

When I got my first-ever celiac bloodwork results back in January and started sharing the news (one relative or friend at a time, shyly, haltingly—prior to my Internet-overshare era), the reactions were generally positive, along the lines of:

“I hope that’s it, so you’ll have an answer,”
or, “Awesome, you’ll finally feel better now!”
or, “Just wheat, rye, and barley? That doesn’t sound so bad.”

Then I’d start rambling about cross-contamination, and strict diet for life, and six months to two years to feel better, and I watched the faces slip and fall. The replies changed to:

“Maybe I don’t hope you have it after all,”
and, “Oh my god, I’m so sorry,”
and, “That’s terrible.”

Which is correct?

Well…obviously the best, most celebration-worthy thing would have been to never get sick in the first place (or—if you believe those insufferable “no sunshine without rain” folks—to get sick, be miraculously cured, and live the rest of my life with a renewed appreciation of my own good health). Being sick is not, you know, preferred.

But, as a second choice, a disease with a relatively foolproof cure—even an excruciatingly slow-motion, longterm cure—is way, way better than a disease or syndrome with no known cure. As long as I’m a good little gluten-free girl, my health is (knock on wood) far more likely to improve than worsen. That’s something to celebrate.

Of course, since I’m not feeling tiptop yet, it can be tough to get my celebratory feelings going. For inspiration, I can always visit the smart and often funny posts around the blogosphere on the “good side” of celiac (like this one, this one, and this one). If you’ll indulge me in jumping on the bandwagon, though, here are the top three tangible things I celebrate about celiac:

1) Community. I know everyone has said it already, but that’s because it’s true. The online celiac and gluten-free community is super supportive and full of passionate, intelligent, interesting voices. As a resident of New York City, land of “hate thy neighbor” and “not here to make friends,” I sometimes feel a bit community-spirit-starved. Sharing my thoughts and hearing all of yours is a real treat.

2) New adventures. This blog, the gluten-free grocery aisle, fascinating followup tests…all previously uncharted territory, all kinda neat. (Yes, even the tests. Spending a morning blowing into a balloon every twenty minutes to measure gut bacteria is something that everyone should experience at least once, preferably preceded by fasting.) If I hadn’t gotten celiac disease, there’s a strong possibility I would still have no idea that buckwheat groats are, like, the best grainlike substance ever. I would also probably not have a bag of xanthan gum in my pantry, as I do now (albeit, I must shamefacedly confess, an unopened one).

3) Savings. What? Gluten-free food is expensive? Okay, yes, some of it is. I too have had those six-dollar mini-muffins and air-filled bags of chips. But you know what else is expensive? Eating out in New York. And you know who doesn’t do that? Baby celiacs. This is why my student loan collectors also celebrate celiac.

Add all that to the prospect of—any day now, fingers crossed—my fully restored health and vigor, and you’ve got yourself something to, at the very least, tolerate and, on a good day, celebrate. But how (besides the obvious, you buncha lushes) to celebrate?

That’s easy. Come to the New York City Celebrate Celiac event! Hosted by Gluten Free Calendar, it’s happening on Saturday, July 13th, from 10 a.m. to 1 p.m., at the Affinia Manhattan Hotel in Astor Hall. I’ll be there to meet any of you who can make it, and I’ll be unveiling some fun new blog-related stuff while I’m at it. Here’s some extra info on the event at the NYC Celiac Meetup page. If you live in the area, mosey on down for performances, activities, vendors, collective effervescence, and, most importantly, my autograph.

Kidding! But I really would love to say hi face to face. That’s why I’m pleased to be giving away 10 tickets to the event. At $5 a pop (or $4, if you buy online here), they’re pretty affordable as is, but if you, like me, have been blowing through your I-don’t-eat-out-at-restaurants-anymore fund, every little bit helps. And, hey, that’s five more dollars you can spend on merch. Not that that’s what blogging’s all about.

To win a ticket, just comment on this post letting me know what you celebrate (or what you don’t celebrate, if you insist on being mopey) about celiac. Considering the scant probability of my having more than ten readers in the New York metro area, you probably won’t face stiff competition, but you’re still welcome to follow me and share the giveaway on Twitter to get extra entries and to celebrate our community here in the Big Gluten-Free Apple (don’t forget to include @spruestory so I’ll know).

For everyone outside of the area who’s read to the end of this post, I hope you’ll still join me, virtually, in celebrating celiac…if only because things could be a whole lot worse.

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