Samantha SheroffThe Voices of Celiac Disease

“Upon receiving my diagnosis, my initial feeling was RELIEF to finally have answers and a path to healing my gut!”

A photo of Samantha outside, smiling.

Describe your life prior to diagnosis.

I lived with symptoms of celiac disease for over eight years before being tested and receiving my diagnosis.

Stomachaches were a normal part of my childhood and teenage years that I just learned to deal with. Once I was entering my second year of college, I started having other symptoms beyond gastrointestinal—headaches, fatigue, dizzy spells, etc. I was experiencing debilitating pain (and anxiety) to the point that I was close to needing to leave school. After numerous appointments, I was so grateful my mom had the idea to see a new GI doctor for a second opinion. Within moments of speaking with this doctor, she had a gut instinct that I would be positive for celiac—and she was right! Upon receiving my diagnosis, my initial feeling was RELIEF to finally have answers and a path to healing my gut!

How did you find out that you had celiac disease? Did you suspect it beforehand?

My celiac disease was confirmed via endoscopy. I never would have suspected I had celiac before. I didn’t know enough about it, and never would have thought that eating gluten was the cause of all my symptoms.

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?

Eight years!! I had stomach issues starting in elementary school, and was given an IBS diagnosis—never tested for celiac at that time. I was not tested and diagnosed with CD until I was 19.

Do you believe anything could have sped up your diagnosis? If so, please explain:

I believe if I knew more about celiac disease beforehand, specifically that its symptoms are more than just stomachaches, I may have suspected it earlier. It was not something I ever learned much about growing up.

Describe your experience living with celiac disease:

It’s been 10 years since my diagnosis and even after all this time, living with celiac disease still comes with plenty of challenges.

The biggest lesson I’ve learned is how to be my own advocate and speak up for myself. I’m no longer worried about “being a pain,” or seeming needy when trying to ensure that what I’m eating is safe. My safety comes first over caring about what other people might think!

I’m lucky to have an amazing support system of family and friends who have taken the time to learn what it means for something to be “celiac-safe” and ensure that I’m always in a comfortable situation.

What would a cure mean for you?

A cure would mean a huge weight lifted off my shoulders! The anxiety I carry with me every day in fear of having a reaction can be a heavy burden at times. I also worry about passing celiac disease on to my future children, so the idea of a cure and them not having to struggle as much would be a huge win!

Is there anything else you’d like to add to your story?

I started my Instagram page @glutenfreereality as a way to push myself to try new places and have a healthier relationship with food. I wanted to share my safe finds with others who have celiac disease in order to help them as well. I’ve made some lifelong friends through the celiac community and for that I’m so grateful!