“I wish this disease were as imaginary as everyone thinks it is.”
Upon getting sick for the umpteenth time in the past six years, I’m now going to have to spend the next few hours not on my impending exam but instead curled into a fetal position in bed. People just don’t understand celiac disease and the medically required gluten-free diet that accompanies it, and it’s not entirely their fault. Many have started to follow the diet because they believe it will help them lose weight, and people like me with a medical diagnosis get grouped in with them. Recent popularity of the gluten-free diet has paved the way for a mass misunderstanding of what it is and its actual medical purpose — utterly indistinct in the public eye from the Atkins diet. When I was diagnosed with celiac disease my sophomore year of college, all my anxiety around my diagnosis had nothing to do with the actual disease or its management but rather how I’d be perceived; how I’d go to restaurants, how I could communicate the severity of my dietary restrictions and not be immediately mislabeled as a fad dieter, how I could ask for the things I needed and still save face. For the first year I refused to say “gluten-free,” opting instead for “celiac food” or other variations because I hated how “gluten-free” sounded coming out of my mouth.
For context: Celiac disease is an autoimmune disorder in which my body, instead of digesting the gluten protein (aka wheat, barley and rye), develops antigens that attack my small intestine. As you can image, it’s not a fun process, and the side effects are as numerous as they are unpleasant. For me, it’s regular nausea, vomiting, diarrhea, migraines, mouth sores, weight loss due to malabsorption of nutrients, severe cramping confining me to bed, lactose intolerance, two years of consistent colds due to a depleted immune system, hair loss, insomnia and constant and very noticeable bloating. And ingesting even the smallest bits of it (anything over 20 parts per million, literal bread crumbs) will set them off again. Not to mention that long-term disregard of celiac disease can lead to infertility, permanent digestive damage, malnutrition and a whole slew of other nasty diseases including, but not limited to, multiple sclerosis, lymphoma, diabetes and epilepsy. Suddenly all that is good and beautiful in the world (pizza, bread, pasta) didn’t seem like too high of an asking price, considering the consequences. Not that I particularly had a choice.
Reactions to the news that I have celiac disease range from “you’re so lucky you’re allergic to carbs” to “dude, you can’t drink beer? That’s lame.” Trust me, bro, I know. That I will never again taste the sweet bliss that is a lukewarm can of Rolling Rock keeps me up at night. When I was first diagnosed I had a reoccurring dream where I would stand outside a Cinnabon and just look at the cinnamon rolls, sitting there gloriously. But these faded with time and made way for the deep and burning hatred I harbor for those who get giddy when I tell them because “OMG!!!! I’M GLUTEN-FREE TOO!!!!” The most aggravating comments I get are not from mostly well-meaning sympathizers but instead from people who elect to eat gluten-free simply because they believe it is healthier, or as I like to refer to them, “fake gluten people.” These are not other people with medical aversions to the protein. These are the people who voluntarily shop at Whole Foods, the ones who lord their salad-eating habits for all to see, the ones who turn up their noses at a perfectly good 50-cent piece of pizza because it’s “dirty.” These are the people who love to complain to me about how difficult eating gluten-free is, how they’re constantly tempted, how they’re so excited to talk to someone who actually “gets it” for once. And I hate them, bitterly.
For “gluten-free” people do have a choice. They don’t have violent reactions that land them in a hospital on their “cheat days” and they are allowed the occasional “sometimes I’m bad when I’m drunk and eat a slice of pizza! Tee hee!” because there are no consequences for them. But this attitude has very real consequences for people like me, aside from whatever (mountain of) personal annoyance that it may bring. In claiming our medically required diet for themselves, they group us — celiacs and other non-celiac gluten intolerances — together with them. The word “gluten-free” now has a societal connotation with the obnoxious trendy diet and nothing more. Half the time the server at a restaurant will roll her eyes when I ask about gluten-free options, and for good reason — half the time she encounters a request for gluten-free foods it is most likely a voluntary one. But if a pan in the kitchen isn’t washed well enough, I’m out of commission, while fake gluten people don’t have to worry.
And however vocal all the fake gluten people are, I am equally as quiet; people with gastrointestinal diseases have dignities, too, which is why most celiacs will give you a very shifty answer when you ask what happens when we eat gluten. We don’t want to talk about our diarrhea more than you don’t want to hear about it. The problem is, our shiftiness minimizes our experience. And I get it; my senior year of high school, when a girl I knew got diagnosed with celiac disease, I thought she was a big giant phony. We eat bread our entire lives and then one day we’re severely allergic. It sounds sketchy. But what everyone can’t see is the years of chronic illness leading up to the diagnosis — the endless, fruitless doctors appointments where they tell you to cut out whatever food and ask you if you feel better a month later. The answer is always sorta, I don’t know, maybe. And the process starts over. All of this, coupled with the aforementioned lovely hipsters and bigorexic health nuts, have de-legitimized the severity of our allergies, downgrading an autoimmune disease to a fad.
Twenty-something yoga enthusiasts around the country have since made a gluten-free diet the next trendy weight loss market, with the global gluten-free market growing from $1.7 billion in 2011 to $3.5 billion in 2016. Overall consumption of gluten-free foods by people who do not have celiac disease in the U.S. has more than tripled, from 0.52 percent of the population in 2010 to 1.69 percent in 2014. This is all in spite of a slew of scientific evidence that exposes real health detriments associated with following a gluten-free diet, that it will not help you lose weight nor is it inherently healthier, but instead is linked to a higher risk of obesity. I actually gained about 20 pounds after I went gluten-free. The reason people may lose weight on the diet is that they end up eating fewer carbs, not specifically gluten. Gluten-free substitute foods are generally higher in saturated fats and sugars, as they tend to be made from starchier substances like white rice flour or potato starch than their whole wheat counterparts and rely on added sugars to make up for differences in taste. Additionally, already-expensive substitute grains like quinoa coupled with a sharp demand spike make gluten-free foods an average of 242 percent more expensive than their gluten-filled complements. For the people who elect the diet, it is a privilege to give up most foods and replace them with an expensive, tasteless substitute. They have the option of buying the cheaper wheat-filled version and instead elect for the more expensive gluten-free one. I do not have such luxuries. Think you’re struggling with funds buying 69-cent packets of ramen noodles? You’re right. Now imagine you have to pay $6 for a loaf of bread. Worse, imagine electing to do so.
“Oh, I don’t have any real reason, I just feel better when I don’t eat it!” is one of my least favorite sentences in the English language. Contrary to popular belief, this diet is not a choice. And the people who do choose it for weight loss purposes or whatever other stupidity only reaffirm the “popular belief” that it is. So if you’re considering “going gluten-free,” just cut out carbs instead. Do all of us over here at Sad, Tasteless Headquarters a favor and stop going gluten-free for a week as a fun challenge. It won’t do anything. And, for the love of God, stop complaining about it on the internet. Let us deal with our diseases in peace.