My Celiac story is longer than most, spanning more than 30 years. Although it was a long and bumpy ride at times, I truly believe being gluten-free for almost my entirely life and having Celiac Disease molded me into the person I am today.
I was a very sick toddler. I stopped growing and, I was not thriving as a 2-year-old child should. After months of visits, my pediatrician told my parents that based on my symptoms my illness could be anything from irritable bowel syndrome to giardia. In early 1981, I started seeing a pediatric gastroenterologist on Long Island, NY. I spent close to a week in the hospital and went through a battery of tests, eventually diagnosed with Celiac Disease. My doctor at the time was 29 years old, only one year out of his residency, and responsible for changing my life forever. I was discharged from the hospital and my gluten-free life began immediately. Within weeks, I started growing and acting like a normal toddler.
Being only a toddler, my parents were responsible for navigating the scarce gluten-free scene and were desperate for knowledge and safe food. They were at a loss as to where to turn for help. There was a lot of trial and error with getting me safe meals. My doctors did as much as they could to guide my parents, but they still felt alone and confused about raising a gluten-free child. Remember, this was 1981. There was no internet and researching gluten-free diets and finding a support community was a difficult feat. It wasn’t until the early 1990s that we even found our first support group. Today, I run the largest Celiac Disease Meetup group in the world. My how times have changed!