Tag Archives: lactose

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.

Advertisements
Tagged , , , , , , , , , , , , ,

Villi or von’t I feel better today?

I probably von’t, though I really can’t say.

shrugging md

One of my favorite things to hate about celiac is how slow-going recovery is. A lot of studies, like this one, check in with people after 6 months on the gluten-free diet (GFD), and (most) people feel (mostly) better by then (though most studies don’t say how people felt in between). Jules Dowler Shepard suggests 3 to 6 months for “younger people” and up to 2 years for “older adults.”

I know, I know, healthy intestines, like Rome, aren’t built in a day. But it’s a bit of a bummer that people without diagnoses are going gluten-free left and right and claiming miraculous, instantaneous improvements to their quality of life, while I’m chugging along clutching my GFD prescription and hoping I’m doing it right.

Back in the spring, I tried the ole GFD for about six weeks and observed no real difference. Did I do some stuff wrong? Yup. Did I do most stuff right? Yup. I assumed I didn’t have celiac but figured I’d go back on gluten and get tested anyway. Blood test, biopsy, and oh hey, I do have it. Awesome. This time around, I’m correcting my errors, and I’m trying the no-oats (even “pure”) and no-lactose thing. I cut out drinking, too, just in case it helps—though this has left my friends most displeased. Coffee…oh God, I just, can’t. Yet.

By the way: A lot of research is done on why people don’t adhere to the GFD. Personally, I think an online database of average length of GFD prior to various symptoms improving would be helpful. Like, type your symptom here to find that X percent of people with anemia see resolution after X months, and X percent of people with depression see resolution after X months. Knowing you’ve still got Y weeks or months left to go until you hit the average resolution date would help fortify you, and knowing you’ve already passed the average could prompt you to go to your doctor to discuss the possibility of other complications. I could get back so many hours of my life devoted to Google searching if I had such a reference.

In the meantime, I’ve settled on July 29th, precisely six months from diagnosis, as the magical date upon which I anticipate all of my symptoms will fade away like brain fog off a windshield, or disappear in a puff of hydrogen sulfide. Until then…

Knowing what ails me is making me happy,
But other than that I feel utterly crappy.

Hope you and yours are feeling vell as ve head into the veekend (a long one, for us Americans). One last assignment for this veek: If you have celiac, how long did it take you to feel better? Did you have to throw in any “add-ons” to your gluten-free diet?

Tagged , , , , , , , ,
Advertisements
%d bloggers like this: