Describe your life prior to diagnosis.
I was diagnosed with celiac disease at the age of five. Since it was so early in my life, most of my life was spent trying to adapt to celiac disease. Because I was young, I was confused and didn’t know why I couldn’t eat this or that. Before the diagnosis, I used to have bad stomach aches, saying my tummy was hot. I also had anemia, meaning I couldn’t absorb iron. This led to suspicion of celiac disease.
How did you find out that you had celiac disease? Did you suspect it beforehand?
My grandfather, who is a doctor, suspected from my stomach aches and anemia that I might have celiac disease. He insisted that we get diagnosed. Therefore, my parents pursued the diagnosis of celiac disease.
If you were diagnosed, who made the diagnosis?
My grandfather, my pediatrician, and my gastroenterologist made the diagnosis.
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?
I always had stomach issues and anemia and was a very picky eater before the celiac diagnosis. A challenge that we faced was that the pediatrician was reluctant to consider the diagnosis saying, “Kids always get tummy aches.” If my pediatrician was more willing to entertain the diagnosis, that would have sped it up.
Describe your experience living with celiac disease
My life with celiac disease is challenging, but I find ways to advocate for myself. For example: In my school, I lead a Food Allergy Alliance, FAA. We led a bake sale and raised money for FARE, Food Allergy Research and Education. We also wrote a report to our school cafe and initiated more allergen-friendly snacks. I also took the initiative down to our elementary school, starting an FAA there. Furthermore, I also led a celiac disease 5K and raised $1,000.
What would a cure mean for you?
If a cure for celiac disease existed, I feel like I would finally feel normal and like everyone else. I wouldn’t be the one kid who brought my own food or asks a lot of questions before eating anything. It would mean not freaking out whenever I see crumbs or feeling different in social situations. This goes to everyone with celiac disease in the world.