Editors note:  Celiac Disease was once thought to be a rare childhood disease and many physicians were taught that it affected roughly 1 out of 5,000 children. Today, Celiac Disease is recognized as a common condition that is primarily a disease of adulthood. A University of Maryland study has shown that approximately 1 in 150 Americans has Celiac Disease, and women are affected three times more often than men. 

The Global Genes Project typically publishes stories about rare and genetic based diseases. We received this wonderful patient story submission and thought we would publish this story to clarify that celiac is no longer considered a “rare disease.”  We also thought a 25 year undiagnosed disease odyssey was worth sharing.  In addition, some people with Celiac Disease also present with Addison’s disease, which is a rare disease.

Cheryl’s Story

My name is Cheryl, I am 30 years old and I have Celiac Disease. I went 25 years before I was finally diagnosed. I was always sick growing up. I missed a lot of school due to vomiting, stomach and intestinal pain. My abdomen was always bloated. It was almost as if I had a permanent cold virus. I got a lot of cold sores. I couldn’t sit in the sun as I would get badly burned and develop a rash. My Mother used to tell the doctor that when I was sick, that dry toast would make me worse. The doctor said that bread could not hurt me.

By the time I was 24, I could no longer work. I had bleeding ulcers. I was in extreme pain 24 hours a day. I was vomiting every time I had anything to eat or drink. I had peripheral neuropathy due to my vitamin deficiencies.  When a bed sheet would touch my ankle or calves, I would scream from the intense pain. I was off work for a whole year.

I went to the doctors every week and they always said the same thing, “we will give you a pregnancy test,”  they always came back negative. Then they would tell me I had the flu. Then one week the doctors were all booked up so I had a chance to see the head nurse practitioner in the clinic. After many questions, she thought I had Celiac Disease and sent me to the gastroenterologist. He gave me an endoscopy and later diagnosed me.

I have some permanent nerve damage, my lower right leg has been numb for 12 years and I am hyper-sensitive to cold. Now that I have been on a gluten free diet for almost 6 years, I feel great. I never knew what it felt like to not feel sick or be in pain.