Describe your life prior to diagnosis.
I was a very healthy and active child, and I was always participating in extremely physical activities. I was always trying something that would challenge my physical abilities, because that is what I loved doing. That all came to a pause when I started showing symptoms of celiac disease. I was always sick and in pain, and I lost all motivation and ability to do any of the things I love.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I was always going to the doctor because I was constantly so sick. They were running tests, and trying to figure out what was going on for around eight months before they came to the conclusion that I had celiac disease. I went to a specialist after my celiac levels came back high during a blood test.
How long did it take for you to get diagnosed since your first symptoms?
I had been experiencing symptoms for around eight months before officially getting diagnosed with celiac disease. I was facing lots of challenges both physically and mentally. I was sick so often that I had to stop going to public school, and I wasn’t healthy enough or strong enough to do the things I loved. All of those things took a major toll on my mental health. I was always nervous that I was going to be sick, and constantly sad that I wasn’t doing my favorite things. I wondered if I was going to get healthier.
I recall that doctors kept telling me and my mother that I was probably just nervous, and that it was nothing serious. It took such a long time for them to realize that I was actually incredibly sick.
Describe your experience living with celiac disease.
Now that I have had my diagnosis for about three years, my health is so much better. I do still constantly stress about what I eat, and things of that sort. There have been several times that I have dealt with cross-contamination and been exposed to gluten. When that happens I get incredibly sick for days, and deal with other repercussions as well. It can be really stressful when that happens, because I’m also an athlete, so it affects how well I play my sport. Most of the time I can avoid cross-contamination or exposures, I do alright. I just have to be so incredibly careful.
What would a cure mean for you?
For me a cure would mean I could worry less about what I’m eating, and how it affects my daily life. It would help me focus on the things that matter most to me. I would get to be a normal teenager. I also know that if there was a cure, less people would deal with the things that I have with celiac disease.
It has taken me a while, but I have begun to accept that people really don’t know a lot about celiac disease. It is not always represented in depth. It is by no means a surface-level issue.
