The worst thing about having celiac disease is that it’s fake

By Nora Helfand

Oct. 18, 2013

It’s a familiar Saturday scene: a gaggle of well-dressed college-age women out for an evening of downtown dining. Kicking back into my crimson booth seat and letting the night’s gossip waft lazily into my ears, the last thing I want is for anything about me to stand out and ruin this moment. But as with most dining situations I encounter these days, something will stand out: my celiac disease. My fake celiac disease.

The waiter brings over a basket of dinner rolls. I groan inwardly as the other girls pass around the basket, each taking a roll and sometimes a little pat of butter. They begin to comment on how good the bread is and how hungry they’ve been since we got here. The basket reaches me. It quivers in my hands. I’ve told myself in advance that I will be discreet and calm about declining, but at the last second I lose it and blurt, “Sorry, I can’t eat gluten.”

My face goes beet red. My friends’ faces, on the contrary, light up with sympathy. One of them says, “Oh, you must be starving!” Another says, “I’m sorry for talking about how good the bread is. You can’t help that you have an illness.”

“But I can,” I protest. “This is just a fake disease, guys. Seriously. I made it up for attention.” And I did.

“Oh sure,” my friend Tracy quips. “Like that bread wouldn’t trigger an autoimmune reaction causing degradation of your intestinal lining, a histological change that can be triggered by an almost infinitesimal amount of gluten. And you sure wouldn’t miss work for the next two days due to the gastrointestinal symptoms. Come on.”

“I might get a little headache or something,” I reply. “But mostly I just eat gluten-free to show others that I am morally superior to them, and to feel special for having my bizarre culinary whims catered to.”

Tracy looks hurt. “How could you say that about something so serious? Your body creates antibodies to itself when you eat gluten, called tissue trans-glutaminase. If repeated over time, this inflammatory process could cause you to develop infertility, anemia, osteoporosis, and even cancer! I don’t blame you at all for wanting to be careful about it.”

I realize that there’s no bridging the gap between my lived experience of celiac disease and Tracy’s watered down media version, so I shrug and try to change the subject.

Then the waiter comes back to take our orders. I swore before I came that I would order something simple, with no fuss, but my pathological desire to make food service workers break their backs in order to fuel my need for validation wins over. “I’d like to ask about the chicken marsala,” I say. “Does the sauce contain gluten? If so, is there an alternative sauce you can use? Like, just plain olive oil? And the side of fried onion straws – could that just be grilled onions so there’s no breading? Also, I don’t like mushrooms. So just plain chicken breasts with olive oil and a side of grilled onions. Got that?”

The waiter smiles and says, “Of course, that’s easy. We always want to make sure our food is safe for those with particular dietary needs.” I curse silently. The night goes on, and my friends share laughs, stories, and camaraderie, being wholly inclusive of me despite my purposefully asinine behavior. But how do you convince someone that absolute necessity is not the only thing that will get a person to make requests that make them look obnoxious? That the true reason people radically change their diet in an expensive and draining way is the simple joy of obnoxiousness?

As any (false) celiac knows, it can be hard to deal with even good friends who do not understand the nature of this fabricated disorder. It’s easy to feel silenced when people who haven’t really been through it insist that they know better than you. I’m sharing my stories so those pretending to suffer from an autoimmune condition know that they are not alone, and that there are those out there willing to work towards a future of greater understanding and awareness of the lack of celiac disease in the adult population.

Things are getting better. Just yesterday – a full month after the awkward restaurant night – Tracy brought me a gluten-filled Halloween cookie. When I started on my usual shtick about how I can’t eat it, she rolled her eyes and stuffed it in my mouth. I couldn’t have asked for anything more.