The life-changing story of my celiac disease diagnosis: how years of unexplained suffering finally ended because of my grandmother’s skin rash.
Some people say stress can trigger autoimmune conditions. Looking back, I wonder if that played a role for me. In 2006 I was a young, single mother finishing an intense bachelor’s degree in clinical laboratory science, starting a new job, moving away from my hometown and my parents, and juggling a child starting kindergarten. I was, by most measures, very stressed. At the same time my health began to change in ways I could not ignore.
I was 24 and frightened. Outwardly I appeared fine, but internally something felt terribly wrong. My digestion went haywire. I had moments when I barely made it to a bathroom and when I did, it felt as if my insides were rebelling. I would be out to dinner and suddenly gripped by intense chest pain — the kind that made me wonder if it was a heart attack. I tried antacids, Prilosec, Pepto-Bismol, and sometimes I would simply go to bed and hope sleep would reset everything. The next day the cycle often started again.
Digestive issues are hard to talk about, and in my quiet family we didn’t discuss these things. Even telling doctors felt awkward. I’d say, “I think I have digestive issues,” and the response was often, “eat more fiber.”
Maybe this is just life
I convinced myself this might be normal—just getting older, learning to live with it. Over the years I adapted. I learned how to manage embarrassing moments, how to schedule my day to avoid trouble, and that eight hours of sleep seemed to make symptoms disappear temporarily. I remained perpetually tired, with dull headaches and low energy. I thought I simply wasn’t the go-getter type who could run on little sleep.
By 2017 I had three children and a growing fear I might die young. I went to bed each night anxious that I might not wake up. I kept that fear to myself. New symptoms appeared: arthritic-like pains in my hands, rashes after sun exposure, and a thin black streak on a fingernail. I knew something could not be ignored any longer. If not for myself, then for my family, I had to find answers.
I made an appointment with an old colleague I trusted. I laid out the symptoms—pain, palpitations, “gut issues”—hoping she could put the pieces together. She was attentive and ordered appropriate blood work. Several tests came back normal: no obvious inflammation, anemia, arthritis, or lupus. Those negative results were disheartening because they once again suggested there was nothing to treat.
A few months later my grandmother saw a dermatologist about a stubborn sore. The dermatologist suspected dermatitis herpetiformis, a blistering rash strongly associated with celiac disease. Her tests confirmed celiac disease.
Meanwhile my hand pain worsened. Simple tasks like changing my daughter’s diaper could become impossible when pain seized my fingers. The same crippling pain later struck my foot. I turned to Google—not to self-diagnose, but to learn. Knowing my grandmother’s diagnosis and understanding that celiac can run in families, I searched for celiac disease symptoms.
The symptom lists I found read like my own history. The overlap made me both anxious and determined: I needed to be tested. I asked my trusted practitioner for celiac screening, and she agreed without hesitation.
The turning point
When my practitioner called, she said, “It looks like your labs are a little off—I need to refer you to a GI.” My chest dropped. “A little off” turned out to be very abnormal: my celiac markers were extremely high. My gastroenterologist’s reaction—“wow, those labs…”—confirmed it. For the first time I had a clear explanation. Gluten had been damaging my body for years.
Many people respond to a diagnosis with sympathy: “I’m so sorry.” My reaction was different. I felt relief and gratitude. Finally, an answer and a path forward. Being diagnosed gave me a solution: remove gluten from my diet and let my body start to heal.
I adopted a strict gluten-free lifestyle on January 15, 2018. The changes didn’t happen overnight, but they were profound. My headaches disappeared. Bloating vanished. I regained energy and no longer suffered the crippling foot pain. Small things that had become constants—fatigue, brain fog, daily discomfort—improved. Living gluten-free has given me hope for a healthy, full life.
There have been challenges—learning to navigate new foods, to advocate in restaurants, and to manage cross-contamination—but those adjustments far outweigh the damage that gluten had been doing to my body. Food became less of an enemy and more of a tool for recovery. Funny as it sounds, if you asked me now what I’d choose for a final meal, I’d have a clear answer: a large Bianchi’s pizza—gluten-free, of course.
If you think you might need testing for celiac disease, please talk with your healthcare provider and ask about celiac screening. It is not recommended to start a gluten-free diet before testing and consulting a knowledgeable provider.