Celiac POV- 18 to life. 

High school is where a lot of firsts happen. First kiss, first time driving, first job, and so much more. The first few years of high school were pretty normal for me: I was going to parties, being weird, dating, making friends, and playing sports – until about the end of grade 11.

I didn’t grow up in a nuclear family; both my parents struggled with mental health and addictions. I felt tired, sick, couldn’t concentrate or control my emotions, more so than the average teenager. Naturally, my doctor put me on stronger birth control, recommended social work and anti-anxiety medication. She knew my parents, I had a history of period pain, and it made sense. 

My stomach and mood issues became worse. My doctor prescribed me anti-acid medication and another anti-anxiety medication. My throat wasn’t burning, and my emotions were pretty flat, so that was nice. It only took a few weeks until I started to develop “hives” and/or “psoriasis”. I now know that this was dermatitis herpetiformis, and that’s why the steroid cream and allergy medication never worked. 

I was in the hospital about once a month at this point. My grades at school were falling when I was on track for a scholarship. I was missing out on life, and my mom couldn’t afford more cabs to the hospital, medication, or the other flu essentials. I was getting in trouble with work and school. 

My life was like a yo-yo; I would be healthy for a few days and then back in the hospital with something new. Another new symptom emerged, tonsillitis. The “tonsilitis” kept coming back until they decided it was time to take the tonsils out. 

Once I was healed up from the surgery and back to eating solid food, I went back to work and school. This time, my body shut down, and I passed out, with a bunch of people in Tim Horton’s visors looking down at me. They took blood, ruled out cancer, and assumed it was a result of not enough food in the home or I was trying to cover up an eating disorder. I had a job, we had food in the house. They gave me a food guide, referred me to psychology, notified child protective services, prescribed vitamin B12 injections, iron medication, and a multivitamin. 

Finally, we are getting close to the end of this painful journey. I had a seizure and was rushed to the hospital and put into immediate isolation. They believed I had meningitis and gave me a spinal tap, I didn’t. They assumed it was a flu strain they had not seen before, as it was flu season. 

A doctor in the first year of her residency saved my life. She asked to perform a test for celiac disease. The hospital administered the GI endoscopy and the necessary blood work. And to no surprise, the GI endoscopy confirmed I had celiac disease. 

The first few years post diagnosis was an adjustment. I ate gluten by choice a few times, but I learned quickly why I shouldn’t. It has been 12 years now since I was diagnosed, and although living with celiac disease does make life complicated. The gluten-free options continue to expand, and products get better. I am also very grateful that I am not a frequent emergency room visitor anymore.

Yours, gluten free for life,

Amanda, Co-Host, the pip podcast