Describe your life prior to diagnosis.
Before my diagnosis, I was living what I thought was a typical and steady college experience. I was involved on campus, had a supportive community around me, and was working toward the goals I had set for myself. My routines felt predictable, and I didn’t think much about my health beyond the usual day-to-day decisions most students make. Nothing in my life suggested that anything serious was developing beneath the surface, and I had no reason to expect that my health would soon become a central part of my daily reality.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I didn’t suspect celiac disease at all. I only knew that something was seriously wrong. I began struggling to keep food and nutrients down and experienced significant, unexplained weight loss. After a couple of ER visits for dehydration and several months of feeling unwell, it became clear that I needed answers.
Working with medical professionals, I went through a series of tests that eventually pointed to celiac disease along with microscopic colitis. Together, those diagnoses explained why my body hadn’t been absorbing nutrients and why my symptoms had progressed the way they did. Finally, having a clear explanation gave me a path forward and marked the beginning of learning how to manage my health.
If you were diagnosed, who made the diagnosis?
I was diagnosed by a gastroenterologist after undergoing an endoscopy and colonoscopy with biopsies, which confirmed celiac disease and the inflammation associated with microscopic colitis.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took several months to receive a diagnosis. During that time, I faced uncertainty around my health while trying to manage college responsibilities. My symptoms made it difficult to keep up, and I eventually had to step back from a leadership role and reduce some commitments while I searched for answers. Because my symptoms didn’t point to one clear cause, it took multiple visits and testing before I was diagnosed.
Describe your experience living with celiac disease
Living with celiac disease has required consistent discipline. I cook most of my meals, double-check ingredients, and take extra steps to avoid cross-contamination at home. When I’m at restaurants or with others, I prepare ahead and ask questions to make sure I can eat safely. It’s not always easy, but being careful has become part of my routine and helps me manage my health confidently.
What would a cure mean for you?
A cure would make life a lot more convenient. I wouldn’t have to plan every meal, double-check ingredients, or worry about cross-contamination. It would also make social life easier;going out to eat or being around food with friends wouldn’t feel stressful or complicated. It would take a lot of pressure off the small decisions I have to think about every day.