I wanted to share my story in an effort to help others. I've had "IBS" for over 10 years and have only now discovered that I have Celiac disease. It started with anemia (B12) and lactose intolerance. I would get bouts of diarrhea and also had the skin form of Celiac disease (diagnosed as a generic rash). I had a gastroscopy and colonoscopy and all of the other usual tests - including a blood test for celiac and a small bowel biopsy. I was told that everything had turned out negative and that I had IBS.
2 years later I had extreme constipation. The Dr. did another colonoscopy but no gastroscopy that time - results turned out negative.
For the past 3 years I've been alternating between diarrhea and constipation. Last summer my diarrhea got so bad (rushing to the bathroom in the middle of the night, unusual stools - indicative of celiac) that I requested to see another gastroenterologist. This time the doctor took the time to listen to my symptoms and he got me in immediately for a gastroscopy. He also did another blood test for celiac and again it was negative.
The sample from my small bowel showed that I did indeed have celiac disease!
So my word of advice is if you're experiencing unusual symptoms - please get another opinion if you have been previously diagnosed with IBS. It's too easy for some of these Doctors to just pass you off. And, in reality, the testing for Celiac is far from perfect. Blood tests are around 95% accurate and the biopsy can also provide negative results. With a prevalence of 1 in 100 people in the US and an average of 10 years to diagnose, I sincerely hope that better testing is developed for future generations.
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I am the 1 in 100 - previously diagnosed with IBS and have Celiac
