Tag Archives: celiac disease

Be our guest…Then again, maybe not.

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Be our guest, be our guest, put our service to the test!

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Tie your napkin round your neck, cherie, and we—
What’s that you say?

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Celiac disease? Tu ne peux pas manger quoi?
Cook your food on a clean—sacre bleu! No substitutions, mademoiselle!

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P.S. I know, I know, many restaurants—even in France—are pretty good about handling special dietary requests. But Beauty and the Beast was set sometime in the eighteenth century, after all. And judging from a few recent posts on the subject, the behavior of some establishments toward diet-restricted guests is still, like Gaston’s, positively primeval. Do you agree?

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Forgive me, father, for I have glutened.

h-armstrong-roberts-young-girl-saying-prayer-praying-loaf-bread-wheat-field-backgroundDid you see this conversation over at Gluten Dude’s blog? I am totally oblivious to pop culture, but from what I can tell, this Dean McDermott guy is a public figure who a) has celiac disease and b) regularly eats gluten anyway.

Good former Catholic that I am, this whole McDermott thing got me thinking about sin. That is, how is gluten like sin? How permanently do we blemish our immortal intestines when we gluten ourselves wittingly or unwittingly? And ought the community to strive, shepherdlike, to bring lost celiac lambs back to the flock?

There’s a perception that Catholics can sin as much as they want, because they can always confess later and be forgiven. Even if this idea wasn’t plucked directly from the limb of the tree of knowledge, it isn’t totally unfounded: confession does offer an opportunity to cleanse oneself of unrighteousness. According to doctrine, your sins—intentional and unintentional, venial and mortal—can be forgiven. But, you aren’t supposed to be finishing up your Hail Marys already planning your next coveting session. You’re meant to learn from your mistakes and fully intend to do better.

Similarly, I think that some people with celiac disease “cheat” on the basis that they can always go on the diet and be healed. They, too, aren’t entirely off: on a strict gluten-free diet, symptoms of celiac disease almost always resolve. As long as you’re good for long enough, your intestines can be good as new, too! I can see how it’d be easy for someone who is asymptomatic or who experiences only mild symptoms to indulge in a cookie here, a slice of pizza there—as a person might tell a lie here, steal a few dollars there—with the intention to get clean later.

Is this such a bad attitude? If so, why? For one thing, there’s refractory celiac disease to consider. Continuing to eat gluten may increase the likelihood that you’ll destroy your intestines for good. You could also wind up with an associated disease, like cancer, that you won’t be able to cure by avoiding gluten. As with eternal damnation, at either of these points there’s no coming back.

Habit-building is another piece of this. Every time you “cheat,” you’re hurting your ability to ever be able to adhere to the diet properly. Willpower is like a muscle, in that training it over the long term improves self-control. The repetition of even venial sins and BelVita bars engenders vice. A gluten-free diet for treating celiac disease requires strict compliance: as in penance, you must whole-heartedly orient your life and heart toward redemption. You must turn away from and repugn your past weaknesses. You must exercise rigid control from then on. If you’ve spent years harming your self-control along with your villi, true compliance may be tough.

Finally, Gluten Dude’s post and a lot of the responses point out that Dean’s gluten habit may be hurting his family and the general community. This brings me back to sin, which the Catholic catechism defines as “an offense against reason, truth, and right conscience; it is failure in genuine love for God and neighbor caused by a perverse attachment to certain goods. It wounds the nature of man and injures human solidarity.” Eating gluten while diagnosed with celiac disease is like that: It offends against medical reason and scientific truth, as well as right conscience, if perverse attachment to certain gluten-containing goods does in fact harm your neighbors. All this means it is, if not sinful, at least pretty sucky.

Of course, we’re all responsible for our own health. Sinners gonna sin, smokers gonna smoke, McDermott’s gonna eat. Maybe he doesn’t operate up to his highest possible capabilities on a daily basis, and maybe he’s doing insidious damage to himself that will take a long time to heal if he ever decides he wants to. But we make choices about what to define as best health, and we make choices about how seriously to take our own definition. Every day, we decide to hit the gym or not, to eat a balanced breakfast or not, to smoke or drink or stress ourselves out or not. If Dean doesn’t suffer many symptoms himself, then maybe the benefits of eating gluten outweigh the risks for him. From what I can tell, the medical community recommends staying gluten-free even if asymptomatic in order to protect against future complications—but of course, doctors caution against smoking and drinking to excess, too, often while carrying on their own substance habits to deal with the pressure of their jobs. Perhaps if Dean’s health begins to go downhill, he’ll change his ways.

In the meantime, his public callousness does make the rest of us look awfully picky. Is it off-base to be upset by this? People in the public eye always face greater approbation for their failings, whether it be Sanford for his affair or Lohan for her carousing, because it reflects badly on the conduct of governors and child stars in general and sets a bad example for the rest of us. Celebs like Dean must be at least some part of the reason that we get asked, “Can’t you have just a little?” or “Aren’t you taking this a bit far?” Then again, I do wonder to what extent people outside of the celiac community actually internalize McWhatsis’s behavior as a reflection on celiac sufferers in general. And, as Amanda has reminded me, celebrities have been known to do far worse things than any of the above.

Still, I do think that Gluten Dude made a lot of valid points. I think it’s fair to be annoyed at Dean and others like him, and I think it’s fair to try to educate them. I also appreciate that Dean’s folly served as an ideal jumping-off point for this half-baked homily, perhaps proclaimed to the chirping of internet crickets in the pews. I’m ready to step down from my wobbly pulpit and will leave the rest to you: How do you respond to situations like this? Do you hate the gluten, not the gluten-eater?

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Who’s your favorite children’s book character with celiac disease?

Ah, books. Magical portals all, they give us insight into unknown minds and experiences; they increase our empathy. It’s beautiful. But we also need books whose characters we can relate to and identify with. Books with characters like us.

Where does this leave kiddies (and kiddies at heart) who have celiac disease? Unfortunately, 97 percent of real people with celiac disease go undiagnosed, and the same appears to be the case for book characters—in fact, the rate of diagnosis is even lower. Although 1 in 133 of your Peter Rabbits and Alices in Wonderland may suffer from celiac disease, you’d never know it from skimming your library catalog. And Googling “celiac disease novel” only brings up “Novel perspectives in celiac disease therapy.”

Does this mean there are no celiac characters, though? No! We just need to get out our microscopes. The gluten-wracked protagonists of our dreams are there if only we look deep enough into the bowels of literature.

My favorite is Moaning Myrtle. True, JKR never said she had it, and it’s a little late for a biopsy; being a ghost, she probably hasn’t eaten gluten in years. But, really? Anyone who spends as much time crying in the bathroom as Myrtle does probably has celiac disease.

“Myrtle gave a tragic sob, rose up in the air, turned over, and dived headfirst into the toilet, splashing water all over them and vanishing from sight.”
—J.K. Rowling, Harry Potter and the Chamber of Secrets

You see? Even in death, she can’t escape the toilet.

If it’s not celiac, then it’s colitis, or IBS, or Crohn’s. Details! As they say, we must have heightened suspicion that celiac is present. So, welcome to the club, Myrtle. In truth, I wish we had a little less in common, but I’ll take what I can get.

P.S. Am I missing anyone? Are there actually book (or movie) characters with known celiac disease? I will happily apply my celiac lens to whatever I please, but I would love to know if the “real deal” already exists.

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The Week of the Nutter Butter

It was heartening to learn yesterday that not every doctor’s office gives out crackers after a celiac endoscopy. (There were also some less heartening doctor stories, but that’s pretty much par for the course—this is going to be another one, fair warning.) But the conversation raised another question for me: If you (or your kids) have been tested for celiac disease, did you eat gluten while you were waiting to hear the biopsy results?

Snide remarks about Keebler’s aside, I must admit—I did. While I waited for my results, I chowed on garlic naan; I slurped cookie dough pudding from Sunshine Happy Something-or-Other Bakery in Chinatown; I went to a dear friend’s apartment for dinner, where he served up mushroom-barley soup. (“It’s gluten-free!” he said. “Besides the barley?” I said. “…Oh,” he said.)

But, mostly, it was the week of the Nutter Butter.

I ate Nutter Butters almost every night of the week after my endoscopy before my diagnosis was confirmed (nine days, actually, not that I was counting). I’d get to the end of the day thinking, “Maybe I won’t do that again today,” and then I’d buy a pack anyway. The guy at the corner store came to recognize me and probably wonders where I’ve been lately. If I’d been more honest with myself at the start of that week, I could’ve bought one family-size package and done the whole thing much more cost-effectively. This may be pushing the limits of strange eating behaviors to which it’s okay to admit on the Internet, but on several of those nights I opened up the cookie sandwiches and spread them with jam. (Great with strawberry, and surprisingly good with fig.)

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I ate those things like I’d never be able to again—which, of course, I was correctly assuming would be the case. (Oh, sure, Pamela’s has a peanut butter cookie, and there are knockoff recipes all over the web, but if it’s not in the shape of a peanut and mass-produced it doesn’t count.) Do I even like Nutter Butters that much? I don’t know. It was a compulsion.

By Monday, going in to week two, I was ready to quit. I just needed to know I had celiac, wanted my doctor to get it over with and tell me to lay off the Nutter Butters. But Monday his receptionists put me off all day, so on Monday night I enjoyed my daily fix. This is the last time, I thought.

Tuesday morning, I called again, and hung up dejected at the response that my results still weren’t in. I spent the day playing phone tag with the two receptionists who took turns feeding me conflicting stories: “We’re waiting for a fax from the lab”; “We’re waiting for the doctor to get in and review the results”; “Oh, actually the lab still hasn’t sent them”; and, finally, “I have your results, and everything’s fine! You don’t have any bacteria in your stomach!” (Yeah.)

By that point, being told “Actually, everything’s fine” was not an option. What about my 97 (or 95, or 98, or 90, depending on what source you check) percent chance of having celiac disease based on my serology results? What about all the psyching up I’d been doing for the past few weeks? What about all those stupid Nutter Butters? I’d been eating them as a final hurrah! A farewell! And what the heck did bacteria have to do with anything?

I let myself get more and more frantic on the phone, thinking that would eventually get me my (real) results—which it did, when I strong-armed the receptionist into faxing me the results, found that they did indicate villous atrophy, and called back to demand another number at which to reach the doctor, who had by then left for the day (because I had “called too late”).

Even though I’d been sick for two and a half years and for much of that time accepted I’d just always be sick, suddenly the thought of spending even one more evening eating peanut butter sandwich cookies opened up a vast black maw above me. (An exaggeration? Fine, it was cloudy with a chance of Nutter Butters.) And whether I got my results that day or not, couldn’t I have just gone home and not eaten Nutter Butters? Couldn’t I have gone gluten-free at any time I wanted? Did I really need that harried 30-second phone call with my doctor to know, “You’re positive. Try to avoid wheat, rye, barley”?

Yeah, for whatever reason, I did. I needed certainty; I needed a real turning point; I needed closure. I’m pretty sure that without that lame conversation with my doctor, I would’ve gone home, bought my mediocre sandwich cookies, and steamrolled a few last villi. Then spent all of Wednesday trying not to let the same thing happen again. Funny how habits work, isn’t it?

Since receiving my diagnosis, I’m proud to say I haven’t (knowingly) eaten a single speck of gluten. And after a bit of a slump, the past few days I’ve even felt my cooking mojo stirring again. I’m looking forward to putting the finishing touches on my kitchen setup, feeling better, and eating well for life. Though it’s probably going to be a while before I try out a Nutter Butter imitation.

Tell me some of your food memories (fond or otherwise, -free or otherwise) in the comments! Do you miss Nutter Butters and or Oreos?

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