SamanthaThe Voices of Celiac Disease

“I was constantly exhausted, bloated, nauseous, and itchy, and my skin was always red with sores and very painful.”

A headshot of Samantha.

Describe your life prior to diagnosis:

My life before my diagnosis was a living hell. I was constantly exhausted, bloated, nauseous, and itchy, and my skin was always red with sores and very painful. I always had a migraine; I even drove myself to the ER thinking I was having a stroke and was admitted for severe migraines. The list goes on!

How did you come to know (or suspect) that you have celiac disease?

A gastroenterologist had me do an endoscopy and blood work. The results came back pretty bad for iron deficiency anemia and malabsorption. All my numbers were a mess.

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 was pretty much sick for years and years before I was diagnosed at the age of 47. My experience with this horrible autoimmune disease was crippling. I couldn’t go out to dinner because I knew I would get sick. Basically, I always had to stay close to a bathroom.

The challenges after diagnosis were depressing, too; I wasn’t able to eat the things I loved the most. It really took me a good year to come to grips with the diagnosis and maintain a gluten-free diet, and then it became easier and easier for me. Family members also had to be aware of my celiac disease and be very cautious not to gluten me.

Do you believe anything could have sped up your diagnosis?

No, I don’t believe that. Who would have ever known that it was celiac disease? I was shocked when I was diagnosed, but happy to know it could be controlled by not eating gluten at all!

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

I would like to add that my only child, my son, was tested and does not have celiac disease, but my niece was diagnosed a few months after me!