Describe your life prior to diagnosis.
I went about one year before being diagnosed with celiac disease. It seemed to start out gradually with some sharp abdominal pains that would hit me in the middle of the night and wake me up. A few months after I started getting those pains, I had my first reaction in which I threw up 12 times, had severe abdominal pain that was unbearable and lasted for eight hours. These types of reactions continued to happen once every month or couple of months which is what made it very hard for me to determine what could be causing these symptoms.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I kept suffering through the pain for a year until I finally decided to go to urgent care one night in which the doctor told me that is was simply acid reflux. I knew it was not acid reflux and decided to make an appointment with my primary care doctor who then referred me to a gastroenterologist. When I described my inconsistent symptoms to the doctor, even he didn’t think I had celiac disease due to the randomness of my reactions. However, he decided to test me for celiac disease regardless. Prior to my diagnoses I had no idea what celiac disease was or even what food products contained gluten. The doctor ordered a blood test first which came back as a positive indication of celiac disease, followed by an endoscopy that finally confirmed I had celiac disease.
How long did it take for you to get diagnosed since your first symptoms?
It took me a little over a year to get diagnosed since having my first reaction. The main challenge I faced was dealing with the inconsistency of my reactions. The time my symptoms would show up had no rhyme or reason to them, which left me feeling puzzled as to why I would keep getting these reactions. Some days I could eat bread, pasta, brownies, cookies and nothing would happen to me. Then, on other days, I would get terrible reactions that would last anywhere between 8-12 hours.
Describe your experience living with celiac disease.
When most people finally realize all of the things I cannot eat, they always say they don’t know how I can go without eating it. But for me, it is honestly such a relief knowing what was causing me so much pain for so long. I honestly didn’t find it difficult to stop eating gluten because I was just glad to not experience that level of pain anymore. It was a bit of a learning curve, but over time it became second nature for me to identify the not-so-obvious foods that contain gluten.
Is there anything else you’d like to add to your story?
A cure would be like having a great weight lifted off of my shoulders. It would mean that I wouldn’t always have to plan ahead when going to places to make sure I have something to eat. It would mean not having nightmares of accidentally consuming gluten due to the traumatic experiences I have had. It would mean that I can decondition my brain from always having to check labels or asking people if something contains gluten when they don’t know. It would mean that I can live freely again.
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