Describe your life prior to diagnosis.
I worked almost daily at Subway to pay for university and save for summer travel, often eating sandwiches one to two times a day. I dealt with the usual stressors of being a working university student while staying active in extracurricular activities. A year earlier, I was diagnosed with bipolar disorder, so I was putting a lot of effort into understanding and managing my mental health.
How did you find out that you had celiac disease? Did you suspect it beforehand?
During my travels, I think I caught a bug that might have affected my immune system. As a vegetarian, my food options were limited, and I ended up eating a lot of gluten, like pizza. I started experiencing severe bloating, stomach pain, difficulty walking long distances, and intense fatigue, which seemed to coincide with eating gluten. Since my mom had been diagnosed with celiac disease a year or two earlier, and I knew it had a genetic component, I began to suspect that I might have it too.
Who made the diagnosis?
I went to my GP, explained my symptoms and family history, and she ordered a blood test. At the time, the province I was living in (Nova Scotia) didn’t charge for the celiac disease (CD) antibody test, unlike in other provinces. I believe there may have been a higher rate of CD in Nova Scotia due to ancestry. After the bloodwork confirmed the presence of antibodies, I had an endoscopy and biopsy with a gastroenterologist to assess the damage.
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?
I was diagnosed relatively quickly after developing symptoms. It’s possible that I had mild symptoms in the months leading up to my travels, but I didn’t notice them. However, during my travels, the symptoms became so intense and debilitating that they were impossible to ignore. I had to wait until I returned to Nova Scotia to get tested. It was probably about three to four months of living with what I suspected was celiac disease before I was officially tested and diagnosed.
Do you believe anything could have sped up your diagnosis?
It was actually the quickest diagnosis I’ve ever received, which I know isn’t everyone’s experience. I’ve noticed that doctors tend to take complaints more seriously when there’s a family history.
I’ve always been an advocate for myself, which can be exhausting at times, but I trust my instincts when something feels off with my body and push to get answers.
Describe your experience living with celiac disease.
I was diagnosed over 13 years ago, and the most challenging part was the lack of educational resources available at the time. It was a steep learning curve to understand what gluten was and to start reading ingredient labels. Communicating my dietary restrictions to others was often uncomfortable, and sometimes there simply weren’t options available for me.
While gluten-free products and labeling are common now, they were scarce when I was first diagnosed, making grocery shopping a lot of work. As a university student, it was particularly difficult to give up convenient food options. Additionally, gluten can unexpectedly appear in products like skincare and makeup, leading to a lot of trial and error and some inadvertent gluten exposure.
What would a cure mean for you?
To be honest, I’ve never focused on the idea of a cure. Since celiac disease is an autoimmune condition, I’ve accepted that it will be a lifelong issue. I’m more interested in prevention and understanding why celiac disease and non-celiac gluten sensitivity are becoming more common. It’s not solely genetic; environmental factors, including our food systems, play a significant role in the development of these conditions (and potentially future ones).
Is there anything else you’d like to add to your story?
One thing I wish had been explained to me is how living with CD could impact my body long-term and potentially increase my risk for other chronic illnesses. At the time, I thought cutting out gluten would solve everything, but I ended up experiencing worse mental health struggles and gastrointestinal issues, like IBS, after my CD diagnosis. Understanding the gut-brain axis—the two-way biochemical communication between the gastrointestinal tract and the central nervous system—finally gave me clarity. It wasn’t just bad luck; there was a connection between all my conditions. I developed fibromyalgia and arthritis five and seven years after my CD diagnosis.
While there are many factors involved, I wish I had completely overhauled my lifestyle and been more aware of potential risk factors earlier.
