Describe your life prior to diagnosis:
I was your average college student, I lived in the dorms, played on the Women’s Club Soccer Team, and studied hard. I was (and still am) studying molecular biology and enjoying every day skiing, playing soccer, and meeting new people.
How did you come to know (or suspect) that you have celiac disease?
Living in the dorms, I was always eating in the dining hall, so I ate lots of pasta, pizza, and bread. I started having really severe stomach issues, horrible anxiety, extreme fatigue, and was actually passing out quite often. I went in for a blood test ordered by my pediatrician and was diagnosed.
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 actually got very lucky and was diagnosed on my first blood test. My pediatrician has a child with celiac disease, and she saw in me the same things that she saw in her child and so decided to test me for celiac disease.
Describe your experience with living with celiac disease:
It has been a very steep learning curve since my endoscopy. The doctors told me “go gluten-free for the rest of your life” and sent me off. I had to learn the hard way how to read labels, clean my kitchen, and ensure my safety. I didn’t know how to speak up for myself in a restaurant, that I couldn’t share certain types of pots and pans with gluten-eaters, or that gluten is in beauty and cleaning products too! It took months of research, learning things the hard way, and not getting better for me to come to the place I am at today. I look back now at sharing a pot with my roommate and think I was crazy! She would make pasta in it and I’d use it right after!
I honestly feel like I’ve grown so much since being diagnosed. I’ve done things I never would have before; for example, I jumped out of a plane at 14,000 feet! Coolest experience of my life, and I couldn’t have done that without the confidence that living with celiac disease has given me.
Is there anything else you’d like to add to your story?
I have three siblings and none of them have celiac disease, they were all tested after I was diagnosed. I really want to help others diagnosed with celiac disease navigate the storm, and I don’t want people to make all the mistakes I did!
