Describe your life prior to diagnosis:
I never thought of myself as sick, though I had very common symptoms. It was easy to think they were caused by something else—my active lifestyle, a sensitive stomach, food poisoning. Food journals never worked for me because my stomach aches appeared randomly (I now know that my reaction time is delayed and may not always be consistent). Looking back, I thought constant stomach aches were normal.
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 for six years before I was diagnosed. Some stomach aches were more intense than others. I’m a performer, and it’s no fun acting, singing or dancing with an intense stomach ache. Because my stomach aches appeared randomly, I carefully watched what I ate before performances, but of course at that point I was only guessing which foods I should or shouldn’t eat.
How did you come to know (or suspect) that you have celiac disease?
One of my stomach aches didn’t go away for weeks. I saw numerous doctors and no one could figure out what was wrong. Then my mom called me. She had recently heard about celiac disease and said, “This sounds a lot like you.” My primary care doctor and new gastroenterologist agreed that I had common symptoms and agreed to test me. My blood test results were off the charts. I had an endoscopy and went gluten-free a few weeks later.
Knowing that only a small percentage of people who have celiac disease are diagnosed, I feel very fortunate that my mother happened to hear about it that day. If she hadn’t, I might still be searching for answers.
Do you believe anything could have sped up your diagnosis? If so, please explain:
People with celiac disease are often misdiagnosed because there are so many symptoms that could be explained by something else. I hope that someday there will be universal screening for celiac disease so others like myself could get answers faster.
How is life after your diagnosis?
I never would have guessed that my diagnosis would shape my life so much and in such a positive way. My diagnosis led me to this amazing community. Some of my closest friends are people I met in the online and NYC celiac disease community, and I love connecting with new people.
