Describe your life prior to diagnosis:
I honestly do not remember life prior to my diagnosis because I was so young. According to parents and medical records, I started showing classic signs of celiac disease in late 1980. By July 1981, I had my celiac disease diagnosis.
How did you come to know (or suspect) that you have celiac disease?
As a toddler, I had the classic “failure to thrive” and other GI issues.
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 believe it took about 6 months to get my celiac disease diagnosis. This was extremely fast given this was 1980/1981 and celiac disease was even more rare at the time.
If you were diagnosed, who made the diagnosis?
I was diagnosed by James F. Markowitz, MD, who happens to still be practicing pediatric gastroenterology 40 years later! He is based in Long Island, NY
Describe your experience living with celiac disease:
Being diagnosed with celiac disease at such a young age (less than 3 years old), I feel that I have a unique perspective of growing up in the gluten-free community. I do not remember life with gluten. I was diagnosed at a time when most people had never heard of celiac disease and did not know what gluten-free meant. Growing up, I did not know anyone else with celiac disease and it wasn’t until I was a teenager that I meet someone else my age with the disease.
It wasn’t until my early twenties that I really became involved with the celiac disease community and advocacy in general. I started organizing the NYC Celiac Disease Meetup group in 2005. This community was what I felt I had been missing most of my life. It was so wonderful to connect with so many other people with celiac disease. I think making those personal connections is critical in your celiac disease journey. I am still involved as an organizer of that group today!
With my lifelong experience of living with celiac disease, I started my first blog in 2007. I wanted to share my personal experience as well as a positive outlook on life with celiac disease. In 2011, I started my second blog (Gluten-Free Globetrotter) to share my love of traveling the world while living gluten-free.
Is there anything else you’d like to add to your story?
I truly believe that my celiac disease has defined who I am today. I love connecting with others, have built an amazing network of gluten-free colleagues and friends and have celiac disease to “thank” for all of that.
Find Erin online at her website Gluten Free Globetrotter.
