Describe your life prior to diagnosis.
I don’t remember my life before celiac. I was diagnosed at the age of 3 and so it’s all I’ve ever known.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I was diagnosed with celiac when I was three. As a newborn, I participated in a diabetes study. As a part of the study, I was tested for celiac. After two positive blood tests, my parents took me to a gastroenterologist who did a biopsy and gave me the diagnosis of celiac disease. My parents didn’t suspect that there was anything wrong with me before the diagnosis.
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?
It took five months from the initial blood test to receive the results from the biopsy. Some of the challenges that my family and I faced after the diagnosis was the change in diet and navigating taking away food that I had liked and replacing it with new food. At the time I was three years old and didn’t understand why my I couldn’t have my favorite crackers or mac and cheese anymore.
Do you believe anything could have sped up your diagnosis? If so, please explain.
No, because it was an unexpected diagnosis for my family.
Describe your experience living with celiac disease:
Because I was diagnosed so early in my life, living with celiac and eating gluten-free is all I have ever known. When I was younger, it was always tough on the social side of having to eat differently than the rest of the kids and also somewhat isolating. I never knew anybody my age who also had celiac, and so I felt alone. I felt different and sad when I would have to make a separate gingerbread house on Christmas or never got to try the famous goldfish snack. Along with that, celiac gives me a constant bloat and a persistent stomachache after any meal.
What would a cure mean for you?
A cure would mean I wouldn’t have to be worried about finding special places to eat or going into new situations like college and worry how I am going to be able to eat daily, or worry if the food is contaminated and will make me sick. A cure would mean I wouldn’t have anxiety about explaining to people what celiac is and making them go to special lengths for me.
Is there anything else you’d like to add to your story?
Although living with celiac is not ideal, I accept that it is a big part of who I am, and is something that makes me special.
