We wheat again: Navigating celiac disease in a world of gluten
When I die I am going to ensure that my last meal is filled with all of the wheat, barley, spelt, kamut and rye I can stuff inside my mouth. I want my small intestine to shrivel up and go with me — its weaknesses no longer my problem — my body, laid to rest filled with all of the things that have been its poison for my whole life.
I will instruct the nurses and doctors to bring over plates of tall chocolate cake piled high with layers of rich icing resting between its moist, fluffy sponge. I will start with the cake, moving on to a bowl of pasta next, spirals of noodles filling a glass bowl that reflects my chubby, round profile as I march down the high road to my own demise. I will ask for a package of Oreos, a package of those pink frosted cookies that are so sweet they hurt your jaw and a still warm plate of my grandmother’s brownies. I will move on to a tray of croissants and muffins, drizzled with percisise ribbons of Nutella and sparkling with gems of round blueberries and chocolate chips. I will have a bagel imported from the shop in New Jersey — everything and undressed, naked in its doughy, carbohydrate-filled glory. I will have a Corona with lime, a stack of pancakes, a plate of fried chicken and a plate of mozzarella sticks. I will dip crispy, white-hot egg rolls into a bowl of gleaming soy sauce. I will finish with a chipwich — the kind from the ice cream trucks and a peanut butter and jelly sandwich. Because when I was little, before I was diagnosed with celiac, before I even knew what it was, those were my favorites.
Little did I know then, I was poisoning my eight-year-old insides, bite by bite.
Three million people, about one percent of the population, live with celiac in the United States of America. The disease is, by definition, an immune reaction to gluten, a protein found in wheat, rye and barley. In response to the consumption of the protein, the body is triggered to begin an immune response that attacks the small intestine. This affects nutrient absorption in the body and makes most people with celiac really freaking bloated and causes a whole bunch of other complications I’ll let you imagine for yourself.
Basically, my body has not made a hospitable environment for pizza, pasta, cookies, bread and happiness. I’m Italian, from a family of restaurateurs and chefs and I can’t eat pasta or pizza without being in agony, clutching my stomach and wondering where my genes went wrong. Everything I feel my culture and heritage is founded on — sharing meals, sharing bread — is a problem. Each pizza crust dipped in olive oil is like my own personal cyanide. I wonder if my grandfather is rolling over in his grave, wishing to disown me for my inability to ingest our Italian holy grail: pasta.
In a modern world, having celiac disease is getting easier every single day. Restaurants and grocery stores are keen on promoting gluten free products, which trendy moms who are testing out a gluten free diet and patrons who think they’re being healthy would consider “actually edible.” But the problem, for me at least, isn’t the lack of options or navigating restaurant menus, but rather the social awkwardness and stigma that comes along with being “gluten free.”
No matter how many times I can stress that I am not “gluten free,” but rather have a diagnosed disease that makes my body strongly irritated by gluten products and will lead to the destruction of my small intestines if I do not avoid it, I’m still that gluten free girl. It makes me feel like a burden or an annoyance — always being the one creating the problems when a group of people is ordering out, or when someone wants to share something. Being asked “Oh ... you’re gluten free?” in that monotone and judgemental drawl makes me want to scream, but normally I just respond, “actually, I have celiac,” and the conversation ends there, the person on the other end blinking in strange disbelief and biting into their quesadilla.
The awkward situations that come up are almost constant. Thinking about how food is pretty much the main form of American socialization, one can imagine how the celiac community runs into quite a few fumbles. Being offered a bite of someone’s food — a taste of cookie dough ice cream, a salad dotted with croutons, a dumpling, a slice of thick pumpkin bread — all accompanied by the “I’m allergic” comment will end a conversation every time. Birthdays and office gatherings when everyone wonders why you’re avoiding the cupcakes like the plague and proceeds to offer you them multiple times when in reality you simply can’t have them. Tailgates where people hand you beers, dates where you scan the menu for something not weird but also allergen friendly that won’t bring up the gluten free thing right away and the “let’s order pizza!” comment with the realization that you’ll be skipping out on dinner — all accompanied with the awkward pity coming from everyone around you.
I don’t want anyone to feel bad for me. I don’t want anyone to think I’m doing this to be on some trendy diet, or because I want to drop 10 pounds fast (which, by the way, going gluten free doesn’t do). In fact, I’ve really grown into what it means to be affected by celiac, and how I can make positive changes to enjoy the world of food without gazing, sardonic, on the other side of a bakery display, my head bubbling with dreams of round profiteroles and strawberry eclairs. Instead of just the gluten free flour options, I reach for interesting substitutes, expanding my palate and knowledge on food — and cooking tremendously for someone who has to try different approaches.
Before being diagnosed, I was always eager to choose going out to eat over cooking in, but now that it is easier to cook for myself to ensure I’m not eating anything I simply shouldn’t be, I love to cook. Recently, I became interested in chickpea pasta, which tastes much better than brown rice pasta and brings a different flavor profile entirely to one of my favorite pre-celiac dishes. I also make cauliflower pizza doughs and gnocchi, gluten free cookie skillets and gluten free banana bread. The substitutions I make for flour — opting for almond flour, coconut flour, rice and cauliflower have opened my eyes to substitutions I can be making for other ingredients as well — clarified ghee for butter and oil, cacao for chocolate, almond and coconut milk for regular dairy products and a myriad of vegetables for other common ingredients.
After getting past the separate pie on Thanksgiving — alone in its dingy glory, the awkward encounters and the occasional craving for chicken parmesan, celiac disease has been a blessing for me. It has pushed me into the kitchen, testing recipes, experimenting with flavors, trying new things. It has led me to opt for healthy alternatives, exploring the potential of food and its effects on my body. It has led me to celebrate the ingredients I can eat, to perfect my recipes and dishes and share them with those around me — especially those who can eat gluten — to show them that gluten free is not a burden, but a chance to look at things in a new light. I used to think my grandfather would roll over in his grave, a master chef and food connoisseur, imagining his granddaughter and her small intestine opposing of pasta and pizza and cannolis and the like. But I’m sure he actually looks down on me with pride, my defeats accepted and turned into gluten free triumphs, navigating the world of food as it should be navigated: with a unique perspective, fresh ideas and a pot of water, salted and boiling on the stove.