Describe your life prior to diagnosis:
I got my first migraine at 11 ½ years old and remember complaining that I didn’t feel good around 12. Because of my age, the doctors just thought it was because of puberty, so they didn’t have any solutions. From then on I started breaking out in hives every time I got cold or sweat. I struggled a lot with schoolwork because I couldn’t think. Then I started to gain weight, but the weird thing was that although I didn’t actually gain that much weight it looked like I put on 30 lbs in a short time. Then I got a case of strep throat that didn’t go away for a full year, and, because of the antibiotics, I developed thrush, which stayed until I was diagnosed with celiac disease. It turned out that the thrush medication had gluten in it.
How did you come to know (or suspect) that you have celiac disease?
My mom was my advocate; she showed up to every doctor’s appointment demanding answers because there had to be a reason I was so sick. I was on the border of having hypothyroidism and that raised concerns for an autoimmune disease, which is how we got to celiac disease. We were very surprised to find out that it was celiac disease because our first concern wasn’t about my digestive system.
If you were diagnosed, who made the diagnosis?
I was diagnosed at 18 years old after a full blood work up in Ottawa, Ontario. After being on the waiting list for a year and half, I finally had an endoscopy and colonoscopy. Because of the scarring in my digestive tract I was easily diagnosed.
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 almost eight years to get diagnosed. The challenges I faced along the way could fill a book, but it was mainly trying to convince doctors that there was something wrong and I wasn’t crazy.
Do you believe anything could have sped up your diagnosis? If so, please explain:
In Canada we have universal healthcare for the most part. However, some tests, like the one to test for celiac disease (tissue transglutaminase antibody (tTG), IgA class), cost money and doctors don’t push for tests that aren’t covered by Ontario Health Insurance Plan.
Describe your experience with living with celiac disease:
It took a while to adjust to the difference between gluten-free eating and celiac-safe eating. After I went gluten-free, I felt a major difference, but then I continued to reject foods until I became completely vegan.
