celiac awareness | Based on a Sprue Story

Are you aware of celiac disease? Silly question, I know. But, of course, some people aren’t. Just yesterday, I “came out” as gluten-free to the high school student I’ve been tutoring since last fall, and she asked, “What’s gluten?”

High school students aren’t the only ones unaware of celiac disease—there are doctors who might have the same question, even if they’re less willing to ask it. For this reason, we have Celiac Awareness Month, beginning tomorrow.

Just to be contrary, though, I’m working on raising awareness of something else: gluten-related disorders. At Columbia’s symposium on Development of Therapies for Celiac Disease, “celiac disease” took pride of place in the conference’s name, even though many presentations focused instead on gluten sensitivity, gluten ataxia, and the possible involvement of gluten in some cases of schizophrenia, autism, and other neurological conditions. Quite a spectrum.

Why wasn’t the conference named “Development of Therapies for Gluten-Related Disorders”? There could be several reasons: 1) It was being put on by Columbia’s Celiac Disease Center, which also hasn’t made the leap to putting GRD in the title; 2) “Celiac disease” still has more cachet as a “real disease” with some doctors and researchers; and 3) The term “gluten-related disorders” is still too new for people to have heard it.

“New” is a relative term. Scientists have been recommending this umbrella term since 2012, yet many still haven’t caught on. As a gluten nerd, I receive Google Alerts on “celiac disease” and “gluten sensitivity.” Nearly every day, some newspaper, magazine, or website comes out with an article that uses outdated terms.

I’m a fan of “gluten-related disorders.” To learn why, check out my latest post on My Life with Food Allergies.

And if you think the world needs awareness of all gluten-related disorders, please share.

Adapted from original photo © Jaybird | Flickr

Drumroll, please…

Well, the GFAF Expo is behind us, and so too—finally—is my giveaway. I did the drawing last night, old school, by printing out all of your comments and tweets and combining them together into what seemed like an appropriate receptacle:

Check out my book collection in the background. Yep, that’s Living Gluten-Free for Dummies on the left. No shame.

I tried to take a picture of my sister as she drew the winner, but she was not having it. We’ll have to content ourselves with an image of the lucky winning ticket, instead:

Congrats, Barbara! And how perfect that someone new to the game would get a bag full of goodies to try. I think we can ALL feel like winners here.

Thanks to everyone who took my personality quiz and participated in the giveaway. I had fun dreaming up the personality types and hope you enjoyed the quiz. You can still take it, if you haven’t yet (just for fun). If you do, I hope you’ll let me know what you score!

Since a few people asked, I thought I’d share all the possible personality types and their descriptions. If you want to take the quiz, maybe don’t read these first. Though I’ve heard that spoilers actually increase enjoyment, so maybe you should. I’ll leave it up to you.

We wound up with a preponderance of Celiactivists…not so surprising, considering the milieu, but there were a smattering of the other types. Here they are:

Celiactivist

Photo © CALI | Flickr

You are a Celiactivist. You know everything there is to know about gluten, and you’re happy to inform anyone who doesn’t. You’re active in the celiac community on- and offline, and I’m flattered and flabbergasted that you found the time to take my humble little quiz. Thank you. Now get out of here and get back to making the world a gluten-freer place. (After commenting, of course.)

Spr00b

Photo © Anne | Flickr

You are a Spr00b. You were recently diagnosed and, to put it “bluntly,” you still don’t know nuthin’ about nuthin’. But you sure are eager to learn, and you’ll get there! Try the quiz again in a month. It’s amazing how much time you have to Google your condition once you stop going out to eat.

Silent Celiac

You are a Silent Celiac. You don’t get what the big deal is about awareness and you just want to live your life. You didn’t ask to have celiac and you aren’t going to let it define you. You follow a gluten-free diet, and you may indulge in a blog or two (like mine—good choice!), but for the most part you do your best to forget that you’re sick, and you hope others don’t focus on it, either.

Villian

You are a villian. You have biopsy-confirmed celiac disease, but your callous attitude toward gluten consumption makes you an enemy at best to yourself and at worst to the community at large. You regularly spout mistruths about the disease or give in to the temptation to “cheat” on the diet. It’s not so much that I hate your guts, it’s more that your guts hate you.

My Mom

You are probably my mom. You don’t have celiac disease, so I don’t know why you’d be reading my blog or taking my quiz unless you loved me very very much.[Edit: Actually, even my mom didn’t take the quiz. Go figure.]

It’s also possible, of course, that I got some of you completely wrong because you actually have non-celiac gluten sensitivity. But honestly, if the top researchers in the world can’t agree on a standard for diagnosing this, I’m not going to claim to, either.

In the comments, tell me about the VILLIANS you love to hate, your favorite CELIACTIVIST bloggers, or fond memories of your own SPR00B days. Are there any types you’ve come across that I didn’t include?

Based on a Sprue Story

Tag Archives: celiac awareness

Gluten-Related Disorders: Are You Aware?