Living with Celiac Disease can be a challenge
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Coughing ,vomiting, and struggling to grasp a breath, I was in the medic room before our final band performance at the area competition with five nurses surrounding me telling me I was going to be fine. I couldn’t comprehend how eating a small piece of gluten can cause a big enough reaction to kill me. At the time , I had no idea what was nor that I was diagnosed with celiacs disease. All I knew at the moment was that I felt like a train had smashed into me.
I was on the bus enjoying my Jason Deli spinach wrap dinner after hearing that the Duncanville band was the leading band at the UIL marching band area competition. I was in excitement to get ready for the final performance knowing that our band was going to perform great. As I was putting on my marching bibbers, I noticed that there was a tingling feeling on my lips. I had a voice in the back of mind reminding of a time when my sister was experiencing a similar feeling after eating pizza at a birthday party and later in that evening she was sent to the hospital because she couldn’t breathe. I ignored this feeling because I was too thrilled to perform Postcards from Paris and thought to myself that there was no way I could get sick.
Seconds before the final performance of Postcards from Paris, I was coughing and I had difficulty catching a breath. My friends asked if I was okay or if they should call the band directors over but I smiled and replied I just need water. I did not want to cause a scene at a such an important event. This performance defined if we make it to the state marching contest or if the seasons ends. I tried to hold it in but it got so bad I lost my balance and my friends claim to this day that I turned white as a paper.
As soon as the band directors were notified , they immediately sent me to the medic room where I was greeted by adult chaperones. They asked me questions about what I ate, what was I doing, has this ever happened before but in my head I was thinking how do you expect me to answer your questions if I can’t even catch a breath.
My father was soon contacted and informed of what was happening. My dad was on his way to pick me up but I was forty minutes away from home. It was going to be a while before he could even help me out.
A doctor later came in and the adult chaperones told him the symptons I was having. He examined me a little further and asked “ is there any allergies that runs in your family? “ it took a minute to respond. “Gluten.” The doctor eyebrows raised. My response came out as mere whisper. I took a deep breath and replied back with my strongest voice “Gluten. Both my dad and sister.” The doctor smirked, “Guessed it”
Upon hearing this response the doctor give me a benadryl and a gatorade to drink it down with. “ You are going to feel woozy with this medication, it supposed to knock you out. “ He was right. Minutes after consuming the pill I felt sleepy but the pain i was feeling kept me up.
I was trying not to cry but I was confused and scared of what was going on. I think the nurses there sensed I was frightened and tried to comfort me by giving compliments to the Duncanville band by saying how amazing we were and there was no doubt in their mind that we weren’t going to place. Despite their attempts at making me feel safe that made me feel heartbroken. This was my last Area competition and instead of being on the field getting ready to perform our amazing marching show, I was in the medic room laying down on the bed feeling an unrecognizable pain. I balled my eyes out as the band started playing.
Crying made everything worse. I couldn’t take a deep breath only small pants.
The doctor tested my blood pressure. The results came back and it was higher than the normal rate. “ Does anybody have an epipen “ an adult chaperone asked. “ If it turns to giving her an epipen, we are going to have to call an ambulance. “
At that point, I was terrified. I knew that going to the hospital was going to be an expense my parents could not afford right now. “ No I don’t want to go, give me time and I’ll be better. I promise!” The adult chaperones tried informing me how that suggestion was one that would be dangerous, the doctor sighed. “five minutes max if you don’t make progress the ER is a block away“
At that point I did everything that I could do to calm myself but despite having a close friend by my side, taking deeper breaths and given more medicine, I barely made any progress.
My dad came in just in time before the ambulance was going to be called. I was carried by a close friend and a chaperone to my father’s car. Just the walk towards the car was a battle. I almost tripped getting over a curb and getting in the car. I left the contest with tears in my eyes.
The next week following after the incident, my parents set up an appointment with a registered dietician. I was tested and informed of what celiac disease was.
Celiac disease is when a person eats gluten (a protein found in wheat, rye and barley), and their body mounts an immune response that attacks the small intestine. When the small intestine gets damaged, nutrients cannot be absorbed properly into the body thus causing reactions such as bone and joint pain, seizures and migraines, itching or tingling on the face and fatigue. Ingesting small amounts of gluten, like crumbs from a cutting board or toaster, can trigger intestinal damage. The only treatment for celiac disease is a strict, gluten-free diet.
Finding out I had celiac disease changed my life completely. I couldn’t expect holiday day treats such as cupcakes, cookie and cake pops to be gluten free so I wasn’t allowed to have them. Going to school trips or competitions would be terrible because they would serve Jason’s Deli as lunch. I would skip eating lunch but due to this my sugar levels would get low and I would experience fatigue, seizures or would be unable to stop shaking. People thought I was going through an eating disorder again when I was losing weight because of celiacs disease. I got Canker sores when I accidentally ate gluten. I would hate going to school when I had a canker sore because I would hear the joke everybody would make “ Karen has an STD “. I felt embarrassed. I couldn’t control celiac disease and if I did I would make it completely disappear.
Not only is gluten is food items it can be use as a binder to lotions, beauty products, medications.I would have to double check if lotions or beauty products have gluten so I could avoid skin irritation.
I couldn’t stand how gluten made my life so different compared to everyone else. I felt like I was from a foreign planet and I couldn’t fit in. It took time for me to realize that just because my life is limited to do certain things, it doesn’t mean it took away all the enjoyable things. After I was diagnosed with celiac disease, I said yes to food, with great enthusiasm. . . . I vowed to taste everything I could eat, rather than focusing on what I could not.