Describe your life prior to diagnosis:
I used to be tired before I was diagnosed, but everyone feels tired from time to time. There would be bloating, gas, and constipation, but that happens to everyone. I would have excessive dandruff in my hair and on my skin, but I wouldn’t care much.
How did you come to know (or suspect) that you have celiac disease?
I caught COVID-19 even though I was vaccinated. Vaccinated people tend to have mild cases, which was not the case for me. My time off in quarantine was up, but I was still exhausted.
The doctors checked my blood values and found iron deficiency anemia. But I’d always had anemia anyway. According to the articles I read, there could be three conditions causing it: celiac disease, a parasite, or small intestinal bacterial overgrowth. So I asked my doctor to test me for celiac disease, and my antibodies came back positive!
If you were diagnosed, who made the diagnosis?
After serological tests indicated celiac disease, I had an endoscopy with biopsy done. The results revealed that I had Marsh stage 3b celiac disease.
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?
It took about two months. The most difficult stage was waiting for the pathology results. In that time, I came across cases of people like me who were diagnosed late and died of lymphoma.
Before the biopsy, the gastroenterologist told me that I should start a gluten-free diet, but the internal medicine doctor said that if I start a gluten-free diet, the results may be misleading. These two different recommendations increased my stress even more. I had been on a gluten-free diet for a week and only had one week left for the biopsy. So I ate excessive amounts of gluten, which I know was unreasonable. On the one hand, I was in denial. “What can gluten do to me?” I was saying to myself. A week later I had the biopsy done and a rash covered my entire back.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Blood tests for celiac disease should be performed on anyone with chronic iron deficiency anemia.
Describe your experience with living with celiac disease:
I’ve been reading about living gluten-free, and I share what I read with people on social media. I hope it will be useful for patients with celiac disease. I also get support from a nutrition coach to heal my gut and eat gluten-free.
