Describe your life prior to diagnosis:
Ever since I was a child I always had a very weak immune system. I would get sick often with things like stomach cramps, oral ulcers and what not. In the past couple of years, it just kept getting worse and new symptoms appeared, like my hemoglobin level dropping, hair loss and sleepless nights because of stomach aches. But no doctors could detect what was going on with me. I did so many checkups, blood tests, ultrasounds and X-rays over the years but nothing was ever found.
How did you come to know (or suspect) that you have celiac disease?
I was on iron medicines for almost two years but as soon as I finished a dose my hemoglobin level would drop drastically. So we finally decided I should meet with a hematologist. He ran a couple of blood tests and finally detected celiac disease. It was kind of a relief to find out what was wrong with me, but that wasn’t the end of the tests, as I was told I needed an endoscopy and biopsy to confirm the diagnosis.
It took 23 years to get the correct diagnosis. And then began my gluten-free journey.
Do you believe anything could have sped up your diagnosis?
More awareness about this disease among health professionals.
Describe your experience with living with celiac disease:
It was very tough initially since gluten-free products weren’t easily found where I live. Being a huge food lover, I had to give up so many dishes and cuisines and create my own gluten-free versions, which wasn’t easy.
The first six months after diagnosis I spent in self-pity, crying and being depressed because I wasn’t able to eat everything I loved. I began to crave any deep-fried food, cried a lot (still do at times) and always questioned “WHY ME?” It felt like my world had turned upside down. But then I took it upon myself to bring about drastic change and follow the diet strictly. I was done being sick all my life.
I learned to embrace the gluten-free life. It helped that gluten-free food started to become available in my area. Many restaurants started marking dishes “GF” on their menu, which wasn’t the case previously. It made me feel like the universe was working in my favor.
Although things became easier, the prices of gluten-free products still never fails to surprise me. My life with celiac disease did come at a price, I’d say!