Describe your life prior to diagnosis.
I did not know a life without symptoms since my symptoms started during infancy. Life was constant nausea and pain after every meal. I was a carb junkie and lived on everything that contained gluten. That was my favorite kind of food. I felt sick every day and had a lot of hard nights awake in pain, unable to lay down or sleep.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I got fed up with feeling how I was feeling every day and demanded my gastroenterologist perform an endoscopy. My GI was positive he was not going to find anything, but went along with testing because I had had issues for so long.
I had no idea celiac disease was going to be my diagnosis. Even though I had a friend with it, I never expected it for myself.
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 had symptoms from when I was a baby until I was diagnosed at 19 years old. Doctors and family members would say my symptoms were from stress as I had a stressful upbringing, however, deep down I always felt it was something else.
Do you believe anything could have sped up your diagnosis? If so, please explain:
If the doctors I went to throughout my childhood had run a simple blood test to see if the antibodies were there, it would have sped up the process by years. The top children’s GIs were my providers and they never went on the inside to look and see what was going on. They never completed an antibody blood test and instead gave me a different diagnosis due to everything else being negative.
Describe your experience living with celiac disease:
My experience has been tough. It has been a little over three years since I have received the diagnosis and it is still hard to accept at times. I think it is crazy to live my life without ever cheating or having a bite of something that the gluten-free version could never compare to. We do only live once, but the guilt and shame that comes along with knowing the damage being done is hard.
What would a cure mean for you?
A cure for me would mean freedom. Freedom from the guilt, stress and society’s judgment. A cure would mean a “normal” life again. A life where the grocery store is not a memorial of all the things you no longer can have.
