In this blog post, guest blogger Cassidy Urbancic shares her story of being diagnosed and learning to live with celiac disease as a young teen. According to the Celiac Disease Foundation, it is estimated that celiac disease affects one in 100 people worldwide and that 2.5 million Americans are undiagnosed and at risk for long-term health complications from the disease.
I was 11 years old and going into sixth grade when I was diagnosed with celiac disease. I had never heard of gluten or celiac disease. My only symptoms were mild stomach aches after some meals, and I was on the lower end of the height and weight spectrum.
I was surprised when my pediatrician prescribed the blood test for celiac disease and even more surprised when it came back positive. Shortly thereafter, an internal biopsy proved there was inflammation in my small intestine caused by gluten, and the doctors confirmed that I did, in fact, have celiac disease.
Now I am 15½ years old and have been living with celiac disease for 4 years.
Frequently I get asked, “What is gluten?” Gluten is a protein inside wheat kernels. The proteins are long strands of amino acids that are very strong. Two major proteins that make up amino acids are called gliadin and glutenins. The gliadin gives the gluten protein its plasticity. The glutenins link up with each other to form super long, spring like chains. This is why gluten-filled foods are light and fluffy.
But even more frequently, I get asked, “What is celiac disease?” Gluten gives me a mild stomach ache and makes the cilia (the little “fingers”) in the lining of my stomach unable to grab all the nutrients. If I did not eat a gluten-free diet, I would become more susceptible to certain cancers, autoimmune diseases and even infertility. Even though you “can’t see my disease,” it has very serious implications. I am thankful for my inquisitive doctor who helped diagnose me before my symptoms got worse.
Being diagnosed with celiac disease is the worst and best thing that’s ever happened to me. It’s challenging because when I visit friends or go to parties, I usually have to bring my own food and explain to people why I can’t eat certain foods. But, I’m lucky to have many understanding friends and family members who have gone above and beyond to prepare special foods for me and never make me feel left out. The times when I have to politely sit out during the meal are very rare.
I’ve also begun to experience food through a different point of view. Though not all gluten-free food is great, there are many foods that are amazing. My mom’s gluten-free chocolate chip cookies, my cousin’s homemade Italian meatballs and Snyder’s-brand gluten-free pretzels are a few. I’ve also become more adventurous in my food choices (Who knew clams and mussels could be so good?). I love to meet others with celiac disease because we form an automatic bond. We share recipes, favorite gluten-free brands, and great gluten-free restaurants (ask me about the Happy Tart in Falls Church, Virginia).
Celiac disease has made me understand that many people suffer from diseases and ailments that you can’t always see but are still very serious. I’ve learned to be more accepting of people, because they might be affected by a disease or allergy that you can’t outwardly recognize. Celiac disease will affect me for the rest of my life and I’m ok with that. Yes, there are still people who have no idea what it is, but I jump at the chance to teach others about it!
Cassidy Urbancic is a sophomore at Washington-Liberty High School in Arlington, Virginia. When she is not educating people about celiac disease, she enjoys singing in the chorus, playing lacrosse and all-things Broadway! Cassidy recommends the Celiac Disease Foundation and Gluten-Free Living magazine as good sources of information about the disease and how to follow a gluten-free diet.
Thank you, Cassidy, for sharing your inspiring story with our readers.
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