Describe your life prior to diagnosis:
When I was in high school I started getting migraines that would last about two weeks at a time. I went to the doctor, and they drew blood and said I was anemic. So I began taking iron supplements. I still had a little minor bloating, but nothing alarming.
Then in June 2020, a little over three years later, I started having trouble focusing and severe anxiety and depression. I went to see a psychiatrist and was diagnosed with ADHD. It was a struggle.
Soon after, when I went back to the doctor for an infection, I saw my weight had dropped 5 lbs. I didn’t think much of it, but when I then came back the next month for immunizations, I realized I had dropped another 5 lbs. At this appointment I also told my doctor that I had a bald spot, but everyone said it was just from stress since I was starting nursing school.
Then at the end of August I decided to go to the ER because I was so bloated that I felt full even though I wasn’t eating much. I’d also had a change in bowel patterns, which nursing school taught me is never a good sign. I felt like my body was shutting down and I was losing so much weight. The only thing the ER said was they thought I had an intestinal bug because of the fluid filled loops of my bowel. They drew lots of blood for testing, too.
I had to follow up with the doctor a few days later. A day before my visit, I was searching my symptoms on Google (which I don’t recommend) and came across celiac disease. I had no idea what it was, but it matched my symptoms. When I got to my follow-up appointment, my doctor took a step back and said, without me suggesting anything, “I’m going to test you for celiac disease. But for now, do not have any dairy products at all”—I’m lactose intolerant—“and we will call you with the results.
Well, my results were positive. My tissue transglutaminase (TTG IgA) was extremely high—I was higher than the range that the scale tested for.
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 around three and a half years. I thought my issues were all from dairy until I stopped having dairy and still had lots of pain.
Do you believe anything could have sped up your diagnosis? If so, please explain:
No, because it was so hard to piece all the seemingly unrelated symptoms together.
Describe your experience living with celiac disease:
My life has completely changed. I know what I eat, I am careful, I tend to eat healthier just by personal choice, and I feel more comfortable in social situations as I bring my own food.
