To Celiac and Beyond

ZIMMYTWS VIA GETTY IMAGES“She might be lactose intolerant.” My mother had taken me to a pediatrician to figure out why my stomach hurt every morning after a breakfast of cereal and milk. We eliminated milk, and the problem persisted.

“She’s just nervous to go to school.” This made no sense to my mother. On the contrary, I liked school.

“You’re losing weight,” I hear in high school. I know this, but I don’t know why.

Years later, home from college for winter break, I see a dermatologist. “It’s just stress,” I am told when I point out the scaly patches of skin around my eyes.

When I start working after graduation, I notice how much I am sleeping on the weekends and yet how exhausted I feel.

I see another doctor, who says I suffer from chronic fatigue. Unsatisfied, I monitor my symptoms—stomach pain, bloating, exhaustion, brain fog, moodiness, weight loss—and when they occur. I go back to the doctor and request a blood test to screen for celiac, which came back overwhelmingly indicative of the disease.

After a few weeks of visiting my favorite restaurants and bakeries and having one last bite of the glutenous foods I once cherished, I completely cut out gluten from my diet.

Girl feels sick, girl treats illness, girl feels better. End of story, right?

Dealing with celiac disease sometimes feels like being in a video game. Level 1 challenge: Unlock the world of gluten-free by identifying and eliminating the gluten-containing monsters.  Level 2 challenge: Spot the cross-contamination and rescue the village of celiacs from being glutened (“village” here really just refers to me, but for illustrative purposes, I’ll go with it). Level 3 challenge: Obtain stars by reconciling how to interact with others without calling attention to your food restrictions, or risk losing your (social) life.

I’m still at Level 3. Much of socializing revolves around food, and while it’s perfectly acceptable to ask if something is gluten-free (or nut-free, or vegan, etc.), it doesn’t end there. I’ve learned that in restaurants, it’s not enough to ask if something is gluten-free. “Gluten-free,” though there is a precise definition, might mean something different to different people. A bakery I went into recently offered gluten-free options in a separate case, prepared in a separate kitchen, but when I ordered a gluten-free cupcake for myself and a slice of chocolate cake for a friend, they were placed in the same to-go box, smushed up against each other like a cheek on a window.

Socializing while managing a food intolerance can be especially difficult when forming new relationships. While a new friend might not be put off at all by your dietary restrictions, it is not uncommon to want to hide them anyway so that you don’t come off as “that person,” or high maintenance, or otherwise not “chill.” In reality, much of this insecurity is baseless, and few people will actually be perturbed by your gluten-freedom. You may have to answer a few questions, but then you move on. You order what you can eat, and if you don’t want to ask 300 questions about how something is cooked, order something simple. Still ask the necessary questions, but if you don’t really need the fries and are worried about asking too many questions, don’t order them and you can avoid the cross-contamination conversation.

Recently I was invited to a new friend’s house for a dinner party. I told her I would be happy to attend, but have celiac disease so I can’t eat anything that has gluten in it. I then said that since this can be a burdensome dietary restriction to accommodate, I would be happy to bring my own meal. At first I thought this might be strange. I imagined showing up to pristine white plates filled with delicious meats and gravies and sides, and finding my plateless seat, whipping out my plastic container of lukewarm, leftover gluten-free pasta, and eating right out of the container while avoiding the glances of those around me. Then I learned that someone else who would be attending has celiac disease as well, and that she was only comfortable attending because I had offered to bring my own meal first, and she then felt that she could do the same.

Every situation will be different, but they become easier to manage with more experience. If I had been diagnosed with celiac disease as a child, I wouldn’t have felt so sick growing up, but I would have been faced with a different set of challenges. It can be hard for children to understand why they suddenly can’t eat pizza with their friends, or why they have to bring their own special cake to birthday parties. This is what motivated me to write “The Adventures of Celia Kaye.” As hard as it was for me to adjust to celiac disease as an adult, it must be that much harder for kids who just want to fit in. The character Celia Kaye is someone whom kids can look up to, who might help them understand a little bit more about food restrictions, and how to have fun with them rather than be stifled by them.

Dealing with the aftermath of a celiac diagnosis can be challenging. It becomes easier, however, when I recall how I used to feel after eating gluten, and how much better I feel physically and mentally after cutting it out. If I have to figure out how to manage a few social situations that otherwise wouldn’t even cross my mind, that’s fine. At least I can socialize now instead of always leaving early because I don’t feel well, or not going out at all because I’m exhausted. It’s become easier for me to look at foods that I used to love and not wish that I could still have them. I know how sick they made me feel, so I don’t feel compelled to eat them. And while celiac disease can have serious consequences if left untreated, if I have to have a disease, I’m fine with that disease being celiac because it’s treatable with a diet change. Yes, it can be hard to trust that food is safe when prepared by others, and others are surely affected more seriously than I am by cross-contamination, but in my experience celiac disease becomes easier to manage with every new situation. I wonder what’s in store at Level 4.

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This post was originally published on The Baby Spot.