Describe your life prior to diagnosis:
Prior to diagnosis, my life felt a little confusing. Most of the time I’d be carefree and enjoy whatever food or restaurant I wanted. But a handful of times a year, I’d get abdominal pain so crippling it would cause me to double-over in pain and sometimes even collapse.
I had been misdiagnosed so many times throughout the years; I thought the pain was caused by dairy, too much sugar, a spastic colon, Crohn’s disease, colitis, or irritable bowel syndrome (IBS), all of which were different conclusions medical providers arrived at prior to my actual diagnosis of celiac disease (CD).
How did you come to know (or suspect) that you have celiac disease?
In truth, I was blindsided. I was told so many different things throughout the years and celiac disease was never one of them.
It wasn’t until I got so sick for almost 50 days and lost 15 pounds in less than a month that a new gastroenterologist thought it would be a good idea to run a blood test for celiac disease. When my IgA numbers came back off the charts, I knew that it was undiagnosed and untreated celiac disease causing my illness and symptoms.
How long did it take for you to get diagnosed since your first symptoms?
Almost 15 years.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I think more awareness of the disease could have helped. Despite seeing two separate gastroenterologists, neither thought to do an endoscopy or even blood tests for CD. It wasn’t until 15 years passed and a third gastroenterologist visit that celiac disease was even floated as a possible cause of my symptoms.
Describe your experience living with celiac disease:
To say I was gobsmacked would be an understatement. I was so surprised I had celiac disease that I had a meltdown after seeing my bloodwork results.
In the beginning, it was very overwhelming. I didn’t know what was safe to eat, if I could believe the gluten-free claims on labels, or how to safely go out to eat. I didn’t know if a random stomach ache was the result of unintentionally consuming gluten or something else.
It wasn’t until a year after diagnosis that I felt my health had fully recovered and I had a better grasp on how to make food safe and enjoyable again. In truth, I’m still learning and getting comfortable with the diagnosis. I’m still not comfortable letting others cook for me or going out to restaurants, but I’m gaining more confidence bit by bit. I’ve also realized that the occasional accidental glutening is not the end of the world—sure it’s miserable for a few days, but I’m resilient. Heck, you have to be with this disease.
What would a cure mean for you?
Freedom! It’d give me the confidence to participate in social events and travel without worry!
