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est. march 5, 2020

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To Eat or Not To Eat: Living with a Food Allergy

June 16, 2020

    Every time I step into a restaurant, I wonder if I will leave healthy or poisoned. As a teenager living with food sensitivities in a culinary society, a single misstep can lead to sickness. Though food safety is progressing, I must tread carefully to ensure my safety. 
    I was diagnosed with celiac disease at age five. If I eat gluten, which is in wheat, barley, and rye, my immune system attacks itself, leading to flu-like symptoms. However, avoiding these ingredients isn't the hardest part. People with celiac disease are often so sensitive to gluten that even a crumb falling into their glass of water can trigger a response, called cross-contamination.
    Communication is crucial in making sure people living with food allergies are safe, but it is often what is lacking. I was in New York for Thanksgiving and my parents were excited to take us to a gluten-free restaurant. We wanted to get their Thanksgiving special, which consisted of turkey, potatoes, and cranberry sauce, much like our traditional Thanksgiving meal. Our waiter came to take our order and my mom went down the customary checklist to see if it would be safe for me to eat. "Do you clean your cutting boards? Do you serve anything that isn't gluten-free? You're a dedicated gluten-free facility, right?" The waiter assured us that everything was gluten-free, except for some beer in the back of the bar. My mom went on to grill him about the meal we planned to order and he promised us it was all safe for me to eat. "So, the Thanksgiving Special, with the turkey and the mashed potatoes, is one hundred percent gluten-free?" The waiter was shocked. He seemed appalled we would even consider a gluten-free rub on turkey. By making a single dish with the allergen, the place was no longer a dedicated facility. If my mom hadn't pressed on about the meal, I would have gotten extremely sick. That experience scared me and caused me to be more cautious about my allergy than is probably healthy.
    When I get contaminated, I feel awful. I throw up, have headaches, and feel extreme fatigue. My immune system attacks my villi, structures in the small intestine that absorb nutrients, which can lead to a nutrition deficiency. It can take anywhere from a few days to a few weeks to recover. Still, that is a cakewalk compared to what happens if someone with a more serious allergy gets exposed. My father's co-worker was camping with his daughter, who had a severe allergy to peanuts. It was dark and she ate something that would normally be peanut-free, but wasn't. She went into anaphylactic shock and passed away. I was upset and scared when I heard about her death. Even though I'm not in danger of anaphylaxis, her story only fed into my fears. A tiny misplaced ingredient robbed a teenage girl of her life, which could have been saved by a simple cardstock sign over the food, warning her of what it contained. Could I have my health stolen from me too?
   Our communities have made huge strides toward a safer society, but people with food allergies, especially kids, still face intolerance daily. One-third of children with food allergies are bullied as a result. There was an incident where a child with a severe allergy to dairy passed away after being chased with milk by his classmates. When I heard of this, I was horrified. This boy in grade school, fallen victim to ignorance and cruelty, made my heart ache and my face burn. My community is always supportive of me, not limiting me to my disease. I'm not just the celiac girl; I'm also a writer, a believer, a dreamer, an achiever. This boy died an outsider, the allergy kid, instead of his complete self. Did he want to be an astronaut? An artist? An acrobat? His allergy shouldn't have stopped him, but, somehow, someone twisted fate so it did.
    Another issue that food sensitive people face is the cost of living. I've noticed gluten-free food is more expensive, but this doesn't worry me now, because my parents are very supportive. However, I am concerned about moving out and going to college. How will I be able to pay for a living space, tuition, and student debt, while dumping my minimum-wage paycheck into food that is up to 145% more expensive?
    Food allergies also have an emotional impact and can lead to conflicting views within the household. My mom is very careful and lives by the motto "better safe than sorry." When I ask her if something is safe for me to eat, she usually responds with, "Is it worth it?" To me, it's never worth getting sick, so I often don't eat foods that are probably safe. In retrospect, she told me, she wished she had been less paranoid since her over-cautiousness caused me anxiety. My dad, however, thinks I should expand my horizons and try new things. I don't want to live in constant fear, but it's hard to rewire the way I've been thinking since my diagnosis.
    Another issue I experience is a lack of trust. My librarian once tried to pressure me into eating ice cream, even though I assured her several times I couldn't. She kept telling me, "You'll be fine," and "What's the worst that could happen?" It's easy to say that when your health isn't on the line, but the experience stressed me out. If someone offers me something and tells me it's gluten-free, I still double-check the ingredients to be sure.
    Trust goes both ways, though. Sometimes doctors don't trust me when I swear I haven't been eating gluten. I have elevated levels of gluten in my blood, even on a gluten-free diet. I've had a nurse look at me skeptically and ask if I was "cheating." My mom reassured her I wouldn't and how I prioritize my health over pleasure, but the nurse didn't believe me. "Teens cheat all the time," she continued, "and don't tell their parents." I knew my mom believed me, but it hurt that a nurse I didn't even know had already pegged me as a liar.
    Staying safe with a food allergy is difficult sometimes, with social pressures, the elevated cost of living, fear of contamination, and even bullying, but I feel confident that the world will learn to prioritize food allergy safety. We're only a few ingredients away from a safer, more inclusive society and, if we work hard and don't forget to clean the oven to prevent cross-contamination, the final product will be amazing and something everyone can enjoy.

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