Describe your life prior to diagnosis.
Prior to being diagnosed with celiac disease, I always enjoyed being able to eat whatever I wanted at restaurants, parties, and at school. I loved being a kid with no allergies and always could never imagine not being able to eat certain foods.
How did you find out that you had celiac disease? Did you suspect it beforehand?
My symptoms for celiac were not within the normal range of getting super sick, bloated, or tired after eating foods containing gluten. Instead, after I would eat a sandwich, wrap, or burger on bread, I would experience a tightness in my chest, as if the food was stuck. Many times I figured that I had eaten too fast and just let the feeling pass. The diagnosis of celiac was very unexpected for me because the gastroenterologist ordered the celiac panel bloodwork just as a precaution.
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 was diagnosed by a gastroenterologist at CHOP and referred to the Celiac Center within CHOP.
I had my symptoms for a while before I even noticed that it was abnormal. I always thought that I ate too fast until it started to happen everyday at lunch in school and sometimes at dinner. This was a very uncomfortable and frequent feeling in my chest which is why we decided to get it checked out by a gastroenterologist.
Do you believe anything could have sped up your diagnosis?
I believe that there was not much which could have been done to speed up my diagnosis. It came as a surprise and the symptoms began as something which we were never too worried about until it became more and more frequent.
Describe your experience living with celiac disease.
Personally, I have had a very good experience living with celiac disease. I have been gluten-free for almost three years now and it has become an integrated part of my life. The time adjusting to the diet had to be the most difficult because I was slowly figuring out I could not eat certain foods which had become a normal part of my life. I used to be very tempted by things I could not eat but now I am used to being around foods which are unsafe for me. I know most of my favorite brands, and grocery stores have a variety of gluten-free options. My family and I have found restaurants which are very good about catering to celiac disease. I cannot say it is easy, as I am the only one in my family who has celiac disease, but I manage. Eating out at restaurants with friends and family is tough sometimes, but I feel fully supported in staying 100% gluten-free.
What would a cure mean for you?
A cure would mean a lot for me in the sense of being able to eat whatever I want again. I am very grateful that I have a family which is able to support my gluten-free diet. A cure would allow me to expand my food horizons and have the ability to try new things without having to worry about any dietary restrictions.
