15 Women Describe What It’s REALLY Like to Have Celiac Disease

“When I was younger, I was always in the bottom percentile of weight and height for my age range, but had a huge appetite. I often complained of a stomachache after eating, but I didn’t have identifiable symptoms until high school. I was traveling with my high school musical theatre troupe to perform in Disney when I began to feel extremely hot, started sweating, had the chills, and felt extremely lethargic. At first I thought I was sick or had the flu, but it turns out it was something more. Apparently, theme-park food is basically 100 percent gluten—from the chicken fingers, to pizza, to pasta. When I returned home from the trip, I slept for about 20 hours straight, and after I woke up my mother drove me straight to the doctor’s office. When I was told I had celiac disease, I had never heard of it before. 

“If I ate gluten now, after being on a gluten-free diet for over a decade, I’d experience the side effects for weeks or even months. My body reacts to it as a poison, so the villi in my intestines stop being able to absorb nutrients properly while gluten is in my system. My brain becomes fuzzy and my emotions go bonkers. I become nauseous, dizzy, exhausted, and start to feel like a rock is in my stomach. After about two hours, I become violently ill until most of the gluten is out of my system.”  —Rebecca Knowles