Many people with Celiac disease recognize that it is extremely difficult to get diagnosed with this condition. Doctors are notoriously bad at recognizing a case of Celiac disease when they see it, and some have to wait years before finally getting the right diagnosis. A lot of people think that when they get diagnosed, their troubles are over.
In my experience, Canadian doctors not only have trouble diagnosing Celiac disease, but they have trouble supporting patients and educating patients about how to keep themselves safe. After my diagnosis by biopsy, my gastroenterologist asked me if I had any questions and then told me if I didn’t get better within at least a year, that would mean I had refractory Celiac disease and would have to go on a low fodmap diet.
This specialist didn’t talk to me or my family about cross-contamination, resources, or seeing a dietitian. They didn’t even push to have the rest of my family members tested, (which is highly encouraged by the Canadian Celiac Association).
Nope. All I got was a frightening warning: you need to get better within a year, or else you’ll be diagnosed as someone who’s condition will never improve.
After the biopsy, I was on my own to navigate what was safe and what wasn’t. It was this lack of information that led to me sharing a dirty microwave with the rest of my family, not having my own dedicated kitchen space, and keeping my food on shelves in the fridge that also held gluten-containing food.
The risk for cross-contamination was high and I got sick at least twice.
I wasn’t living confidently gluten-free. I was living in a nightmare where I would wake up each morning scared to death about whether or not I was going to get sick today.
One day, I did a search for a Celiac clinic and found an interesting post on McMaster University’s website. It said that there was a Celiac clinic in Hamilton.
I called the number posted, they said I had to get a referral from my family doctor.
It was the best decision I’d ever made.
Here was a clinic that was encouraging me to talk to my family members about getting tested, that didn’t dismiss my fears and provided me with information about cross-contamination and diet that I never got from anywhere else.
I would highly recommend that those with Celiac disease or those who are unsure if they have Celiac disease or not contact their family doctor to get a referral to this clinic. Please, don’t go what I went through. You can get help. You will get better.
You’re not alone.
What are you waiting for? The link’s down below. Just click on “McMaster Celiac Clinic”.
The best way to get from York Region to McMaster University is to take the 40 GO Bus from the Richmond Hill Centre Terminal. You’ll be getting off at the stop called “Main St. W. @ Paisley Ave. S.” Just ask the driver what direction to head in to get to McMaster and it’s about a 16 min walk to the McMaster University Hospital. In order to get back to York Region, take the 47 GO Bus from the McMaster Terminal to the Hamilton GO station and wait to catch the 40 GO Bus headed north towards the Richmond Hill Centre Terminal.
There are no gluten-free friendly restaurants in or around the hospital. There are some packaged snacks and kombucha available at the Shoppers Drug Mart, snacks at Starbucks and snacks at the McMaster Hospital cafeteria.