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Eyobe continues to struggle with bone health, an issue that came along with undiagnosed celiac disease.


Eyobe Amberber

I was diagnosed with celiac in 2010. Presumably I had gone undiagnosed since birth (21 years). Leading up to the diagnosis, for years I had suffered from stomach discomfort, fatigue, bloating, nausea, stomach pain, and diarrhea (TMI I know – sorry). Current state I suffer from below average bone density levels. These levels are so low that I’m teetering on the edge of an osteoporosis diagnosis at the moment. The doctor believes this is a result of years of malnourishment from before I was diagnosed and moved to a gluten free diet.

During the 21 years I went undiagnosed, a lot of the symptoms I was suffering from I thought were normal – I didn’t know any better. Looking back, that was the most eye opening realization.

– Eyobe Amberber

21 years undiagnosed

Since there is a certain level of heredity to celiac, many have the disease from birth which makes it nearly impossible to discern whether something is not right with your body. As I went into my last year of university, I became determined to find out why I felt the way I did. I worked with a gastroenterologist. At the time, celiac awareness was mediocre at best. I myself hadn’t heard of it until I learned about it through my research. The doctor and I went through a few tests to rule out different ailments and I suggested that I should be tested for celiac, however, he didn’t think it was necessary. He believed that celiac was only prevalent in Caucasian and Asian Canadians individuals. I pressed the topic and despite the fact that diagnostic blood test was not OHIP covered (he mentioned this to me as a detractor to avoid getting tested) I went forward. To his surprise the test came back positive.

Maintaining a gluten free diet is hard. My symptoms have approved and overall health is in a better place but some effects are irreversible. I don’t have a ton of clarity on how long it can take to reverse the damage done to your body but I’m hoping I’ve passed that marker a long time ago. I know my bone condition is unchangeable. It’s also the reason why I’ve always been unable to put on any weight (I’m quite thin).

All of that said, I’m thankful for the work that CCA is doing. Having the diagnostic blood test now covered by OHIP I believe is a milestone achievement and one that should help alleviate the barriers to many trying to find their way.

The blue emblem (GFCP Logo) on food has also become an immediate touch point for my eyes as soon as I pick up anything at the grocery store. I have become an expert label reader but with the dreaded “may contain” statements and what can be sometimes convoluted descriptions, the blue emblem gives me assurance and makes shopping a smoother experience.

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