My Celiac Disease Is Real, Not A Diet

I am not a shy eater. Fried Dough? This one’s mine, go get your own. Pierogies? Yes, please. Donuts? Bring me the hole, too. Pizza? Half now, half for breakfast tomorrow. My relationship with carbs was historically a divine one, a beautiful love. But then I hit 30, and it all crumbled apart.

As a stressed graduate student, my body simply could not tolerate the gluttony of gluten I poured into it any longer. In 2012, I had never heard of celiac disease nor did I know what gluten was. My love of the food that was slowly destroying my innards proved that I had a difficult journey ahead of me — especially considering that I was eating an entire box of mac n’ cheese out of the pot when the nurse called with my blood test results: “You have Celiac Disease, not a gluten allergy.” “What’s that?” I replied, mouth full, and proceeded to eat my mac n’ cheese after the call. (Step 1 of Loss and Grief: Denial). I’ve been in carb-mourning ever since.

For those who aren’t familiar with celiac disease, according to Celiac.org, it is “an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. 2.5 million Americans are undiagnosed and are at risk for long-term health complications.”

In retrospect, I see the signs I missed as a perpetually tired twenty-something. When college friends and I congregated in the dining hall Sunday morning after a particularly big Saturday night, people would lament over worshipping the porcelain god or having the beer shits. Now I know better: You only had a particularly sassy poop that morning; I had the wish-I-had-a-private-bathroom beer shits. Having often described Bud and Miller Light as mother’s milk, it was a blow to discover beer was, in fact, poison to my body.

I did have a moment of relief that there were answers to my horrific stomach pain, perpetual tiredness, headaches, vitamin deficiency, bloating, insomnia and ass blasting, but then I started to get angry (Step 2 of Loss and Grief). A cure meant a permanent lifestyle change. On the scale of diseases, this is a very manageable one (just don’t eat gluten), but it’s like a terrible diet dictator in permanent control for the rest of your life. I did not want to undo 30 years of Oreos and muffins. I used to think smokers trying to quit were whiny and weak; I always had the self-inflated impression that I was strong enough to quit anything cold turkey. Celiac humbled me. You start to realize how dependent your body is on carbohydrates and processed foods. I’m sorry, smokers. You were right: quitting is hard.

When people ask me what’s it like being gluten-free, I explain that walking into a Dunkin’ Donuts, with its wall of floury goodness, is like staring at an ex-partner you’re still in love with. The relationship and break up was not a good one, but deep down, all you want to do is get back together. And it hurts because you can’t. (Step 3: Depression.)

I also learned how strongly food is part of our social lives. No one wants to hang out with the person who orders the side salad (no croutons, please) at the bar when everyone wants to order the sample platter of fried and breaded everything. I still love beer culture, but at beer-based gatherings, I’m as popular as a pregnant woman in a brewery. It’s incredibly hard to separate our social lives from food, so I was terrible at going gluten free my first year. As a result, I created bargaining tools (Step 4), like how wedding cake is an exception lest the newlyweds think I’m being snooty.

Given this disease’s new-found status as an attention-worthy illness, it’s hard to get everyone to understand it. One kind of person, upon hearing that I finally had a diagnosis after being sick for years, will empathetically inform me that they don’t think this is a real disease. There are the ones who tell me, “Oh my god, you’re so lucky. You’re, like, gonna get so skinny.” There's the fad dieters, who like to accidentally invalidate celiac disease with a “Yeah, I decided to go paleo instead.” There are the baby boomers, who just can’t comprehend where this disease came from since “no one in my generation suffers from it.” They ask if I can have things like cheese, chicken, corn and tap water (for real).

Then there are the comedians who love to mock food allergies constantly. I also have fond memories of the bartender who yelled at me across the bar, “Hey Celiac!” to tell me my food order was ready. And my favorites are the health hipsters, who want to tell me they are just like me because they went through the elimination diet by skipping their croissant yesterday with their artisanal coffee and, like, totally feel amazeballs better today. They’re confident their self-diagnosis is accurate, so they don’t need a doctor to confirm it. They are also the ones who like to condescendingly food-explain what it means to be gluten-free, as if I didn’t know; incorrectly telling me to beware certain foods even though I'm the only one who has seen every doctor under the sun and a nutritionist regularly. (To be fair though, hipsters do keep the cost of gluten-free products lower, from "unbearable" to just "painfully pricey.")

The best people are the ones who go to great lengths to accommodate my needs, even though it’s not necessary. They just want to be hospitable and supportive. This is great because then I tell them that gluten is porn to me now. I can’t touch, but I can watch. No, I don’t mind if you ask for garlic bread in front of me; you should absolutely order that double chocolate lava cake. But can you do me a favor? Eat it slow. Like, real slow. Now, tell mama how it tastes: It is soft and moist? Or hard and salty? Tell me. Tell me in excruciatingly sexy detail. (Step 5: Acceptance)

Now, four years into my life sentence, foods are separated into a "naughty" and "nice" list (wine, coffee and chocolate made the "nice" list, so all is not lost). Almost every type of substitute food can be bought online. Grocery stores are now dedicating whole sections to gluten-free food, but restaurants still tend to lag behind the health times.

Ordering in restaurants is a test of both safety and patience. Restaurants go to great lengths to inform patrons if something is organic, free-range or local, but barely give allergy warnings on menus. This lack of communication leads to me requiring an inordinate amount of attention from the wait staff. It’s awkward for everyone I’m dining with.

What’s worse is that wait staff often question the legitimacy of my health needs; they ask, “gluten-free or celiac?” Why does a non-medical professional really need to know my personal health history to justify my food order? What’s worse, I can’t tell you how many times food staff have outright lied to me about what is and isn’t gluten-free on the menu out of either laziness or ignorance. I’ve even gotten into arguments with waiters over whether a potato or corn contains gluten (they do not) and how "gluten-free" should not mean under any circumstance "some gluten."

Celiac disease, while controllable, is not an easy adjustment — physically, emotionally or socially. People used to console me by saying at least I had “loved then lost,” but looking back, I would have sacrificed the birthday cupcakes for a better quality of life long ago. When I got diagnosed, every health professional exclaimed how much better I would feel once I got my diet under control. I had no clue that I was only operating at 60-80 percent of my feel-good potential my whole life. The upside of feeling better is much more important than the social awkwardness of it all. Socially, I’ve learned how to break bread with gluten-loving friends — I’m now just that weird lady with a burger bun, crackers or slices of bread in her purse. Which is fine by me, because a burger just isn’t as good between lettuce slices.

Image: Randall Garnick Photography; Katrina Majkut