Describe your life prior to diagnosis.
My life was very painful prior to diagnosis. I began experiencing symptoms of celiac disease at age three. No one could figure out what exactly was wrong until I was fourteen. I missed a lot of school because I was too sick to attend. It felt like living inside a bubble [for a] large portion of my life. It was very lonely, no one understood what I was going through or how to help.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I found out that I had celiac disease though a blood panel after experiencing symptoms for my entire life.
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?
My symptoms began at age three and became consistently more intense until my diagnosis at fourteen. I faced the challenge of not understanding my body, and not being in control of my health at such a young age. For example, I suffered from bad joint pain for years and none of my doctors ever thought to test for autoimmune illnesses.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I think visiting alternate specialist doctors could have brought me to my diagnosis sooner.
Describe your experience living with celiac disease.
Living with celiac is incredibly difficult at times, mostly in social settings. Getting sick and experiencing that trauma never gets easier. I have been bullied as a teen for having the dietary restrictions associated with celiac, and treated like a burden by some people.
What would a cure mean for you?
A cure for me would mean that I could live life in a more normal way, a life without fear.
