I am the 1 in 100 - previously diagnosed with IBS and have Celiac
#353525 - 12/28/09 11:11 AM
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Hi all,
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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Wow, that is honestly shocking
Have you since stopped eating gluten, and seen your symptoms go away?
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Katie, I love your post and thanks so much for the valuable info. I know how inaccurate the testing is.
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did you have any "red flag" symptoms? symptoms that weren't in the rome criteria? hey did you try the persimmons yet?
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Yes - once I stopped eating gluten my symptoms have pretty much resolved. I do have constipation now though since I'm not getting enough fibre. But generally I'm feeling a lot better. I should add too that it was almost impossible to make the link to gluten through a food diary since my reaction was delayed and I was having reactions to other foods (eggs, peanuts) as well.
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I did have red flag symptoms but still it was difficult to get a diagnosis. For a long time I'd been losing weight but doctors thought this was because I was constipated and therefore didn't have an appetite. When I had the diarrhea, I kept losing weight. Only at the end was I awoken during the night. I basically had developed an infection and the diarrhea became more and more urgent. Although it's great to have these criteria (Rome) the small bowel biopsy is the gold standard for celiac. It's just can be really evasive. Also, having a diagnosis of IBS can sometimes delay diagnosis of other diseases. When I switched gastroenterologists, I told the new doctor that I had IBS and he took my word for it. I should have just described my symptoms. At least now I know and can get better!
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