Confused Please Help
Posted 28 March 2012 - 03:16 PM
Posted 28 March 2012 - 08:10 PM
If he had your duodenum test wrong, or accidentally messed up your results with someone else's or something, then you don't have celiac disease.
If he called and said your genetic test was negative, I would still think you have celiac disease.
Most, not all, people with celiac disease apparently have a specific genetic problem that makes them prone to getting it. However, there exist people who do not have that gene/set of genes who still do develop celiac disease. IIRC, the wikipedia article actually says only 90% of people have the standard 'celiac' gene. They also list a couple of other genes that are known to cause celiac disease. I wouldn't be surprised if the lab/doctors didn't bother testing for those less common genes. (I'm actually rather surprised they did genetic tests for you at all, my doctors won't do that for me, even though I've asked about getting it.)
However, there's still the possibility you don't have celiac disease. There's something called tropical sprue which manifests like celiac disease in that it causes your villi in your intestines to disappear/become damaged, but which I don't believe is caused by gluten. The prognosis for that is not good however, they know even less about that than celiac disease.
Do you feel better not eating gluten? If the answer is at all yes, then you should continue being gluten free. Well, you should continue being gluten free regardless.
There's also a possibility that you have a candida problem. Note that intestinal candida is not a diagnosis most doctors think exist. Or they only think it exists in very sick people like AIDS patients.
Talk to the doctor again if you can.
June 2012 positive visual of celiac disease from gastroscopy
Posted 29 March 2012 - 03:23 AM
Posted 29 March 2012 - 04:49 AM
Since you have the damage in your duodenum, it would be a good idea for you to stay gluten-free.
Soo..did the Dr. say what caused your damage if it's not celiac?
Posted 29 March 2012 - 06:57 AM
Posted 29 March 2012 - 11:21 AM
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