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Confused Please Help

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Posted 28 March 2012 - 03:16 PM

I have had constant nausea since christman. My gastroenterologist did an endoscope and colonoscomy. He said the biopsy in my dude emu showed damage and told me I had celiac disease. He also did a genetic test on me that day. Now three weeks later and much money invested in gluten-free items he calls and says My test is negative. What does this even mean??
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#2 cavernio


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Posted 28 March 2012 - 08:10 PM

So he called and said your genetic test was negative? Or was he saying he was actually wrong about your duodenum being damaged?

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.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#3 dilettantesteph


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Posted 29 March 2012 - 03:23 AM

There are some genes recognized to cause celiac disease in Europe which are not tested for here. A negative genetic test doesn't mean that you don't have the disease. See if your symptoms clear up on the gluten free diet. If you eat more whole foods (produce and meat) it is less expensive and more healthy.
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Bubba's Mom

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Posted 29 March 2012 - 04:49 AM

In a lot of the literature they say DQ2 and DQ8 are the Celiac genes. Many dr.s thing they can rule out Celiac if you don't have those. They have found there are other genes that also can mean Celiac.
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?
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Posted 29 March 2012 - 06:57 AM

I tested negative to the gene testing, but definitely am gluten intolerant. I agree with the others, if you feel better without gluten, stay on the diet.
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Posted 29 March 2012 - 11:21 AM

If you are biopsy positive, you are celiac. Period. Doesn't matter a hoot about the genes. :)
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