Coping with a lifestyle change for survival

March 3, 2023

Extreme weight loss. Dark circles and bags under my eyes. A dry cough. What seemed to be never ending headaches and migraines. What seemed to be never ending symptoms. 


Symptoms for a life changing autoimmune disease known as Celiac. Except, I had no idea what it was. Neither did my parents. 


Months after my heart surgery, I was a mess. A complete disaster. Doctors believed I had asthma and tried treating it. Nothing helped my cough, my headaches, or my weight loss. 


I saw ear, nose, and throat specialists. Even a neurologist to rule out anything scary. But nothing seemed to work. I was an eight year old second grader, weighing less than 50 pounds, having migraines that lasted two days at a time, and constantly feeling weak. 


It wasn’t until my primary care doctor wanted to test me for this autoimmune disease. My symptoms matched what is known as Celiac disease. I got my blood drawn and tested. I remember sitting in a chair, watching the doctors stick a needle in me, and take tubes full of my blood. I remember being in awe watching it, having no idea what was happening to me, to my body. 


Apparently my blood work came back positive for Celiac. My mom was in shock. She had never heard of this disease. However, I would need a scope and biopsy to confirm this diagnosis. 


Being told that I wasn’t able to eat anything wheat related didn’t make sense in my eight year old mind. Why couldn’t I eat cake? Why couldn’t I eat bread? Why couldn’t I eat what I wanted when I wanted, like I had been doing for the last eight years? It made no sense to me. Sometimes, even eight years later I still don’t understand it. 


I wasn’t scared for my biopsy. I had gone through the whole surgery process 13 months early for my heart. My mom came into the room with me. She held my hand as I counted down from three. I felt my mom drop my hand as my eyes rolled in the back of my head. 


I woke up 30 minutes later. The biopsy had gone well. A small part of my small intestine had been snipped and sent off to a lab. I would find out if I officially had Celiac disease in a few weeks. I secretly prayed that I didn’t. I didn’t want this change. I hated change.


The results were positive. I was officially a girl who would live with Celiac disease for the rest of my life. 


I was eight when this all happened. I was eight when I got diagnosed with a life changing autoimmune disease. I’m now 17. I’ve had Celiac for almost nine years. Nine years of constantly explaining why I can’t eat bread. Why I can’t eat pizza. Why I can’t eat like others. 


However, being gluten free has gotten easier. It’s more common nowadays than it was when I was first diagnosed. People are more understanding of what I go through. 


It’s still, at times, hard. Sometimes I feel bad going out with others. I never want to seem like a hassle, but at times I have no choice. Other days, I wish I could just eat normally instead of having to explain why I can’t eat something. 


But I can’t. I never will be. Celiac has no cure. It’s something I will live the rest of my life with. And that’s ok. I have no choice but to eat gluten free and I’m now thankful for that. Even through the occasional physical and mental pains, I’ve grown and learned from them. It’s taught me a lot  about myself.  

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