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04-24-2015, 07:11 PM | #11 | |||
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08-03-2015, 04:18 PM | #12 | |||
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So Beatle, I assume your results were negative?
I went to see a gastro guy today, and he was fascinated and very interested in my neuropathy. That alone was a shock, but I was even more shocked when he said he wanted a celiac test done. He said between the neuropathy and my consistently low ferritin levels (which no doctor has ever expressed interest in) that celiac disease has to be ruled out. I told him I have a friend with CD and I don't have any of the symptoms he has, but he said not everyone has the classic symptoms. I didn't realize that. Learned something new. Recent news on the celiac-neuropathy front. http://www.medicaldaily.com/celiac-d...sorders-333206 "Currently, 30 to 40 percent of all neuropathy cases are idiopathic, meaning they have no known cause. What if a percentage of those suffering from mysterious neuropathy could fix their pain by being treated for celiac disease? Researchers need to expand their study with a larger number of study participants, but the link is there and it needs to be unraveled, according to researchers. In the future, when a person is diagnosed with neuropathy but can’t figure out the cause, Ludvigsson hopes their neurologist might consider screening the patient for celiac disease. A gluten-free diet may actually stop the pain." ________________________ |
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08-03-2015, 04:26 PM | #13 | |||
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Yes, negative for celiac for me. But I support it and any testing that can point to a possible cause. I too have had doctors and neurologists interested in my PN on the front side, only to order tests and then send me on my way.
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"Thanks for this!" says: | janieg (08-03-2015) |
08-03-2015, 04:46 PM | #14 | |||
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I wasn't even there to see him about it, but he hopped all over it. He didn't even talk about the positive FOBT (Fecal Occult Blood Test) that I was there for until the end. He was less concerned about that than the neuropathy being idiopathic.
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08-03-2015, 04:55 PM | #15 | |||
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I was hoping for my results to be positive so I could address it. "Idiopathic" gives us nothing to work with. Maybe you have celiac though. You did the test?
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08-03-2015, 07:36 PM | #16 | |||
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Quote:
It will be the biggest shock of my life if it's positive, but it's worth a shot, I guess. |
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08-03-2015, 08:48 PM | #17 | |||
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The test doesn't seem as accurate as one would hope. Some of my cousins have obvious signs of having issues from eating wheat and have a parent, aunts, and grandparents with this disease. Their tests were negative. I told them just to stop eating gluten.....the don't want to. It will be interesting to see if they get tested again after a few more years and what the results will be. |
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08-03-2015, 09:11 PM | #18 | |||
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I didn't even know there was a celiac test until it was ordered for me.
I wish I could identify my cause and if it were something like celiac... well, it seems like an easy one to manage. |
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08-04-2015, 06:13 AM | #19 | ||
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Magnate
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--which generally includes the following tests:
Anti-transglutaminase IgA (the test most often associated with villious damage) Anti-gliadin IgA Anti-gliadin IgG (the most sensitive, but least specific marker for gluten reactivity) Total IgA (if one has hereditarily low IgA overall, the other tests often do not give accurate readings) --still has about a 15-20% unreliability factor, in that roughly that percentage of individuals who have symptoms but show negative on these tests will show villious damage on small intestinal biopsy (the current gold standard for celiac testing). Often, though, such people will show the damage is patchy or incomplete, especially at early stages. And, of course, if the disease is at early stages, and an endoscopy does not sample sufficient duodenal or intestinal locations, patchy/incomplete damage may be missed. There have been some surveys saying that the typical endoscopist normally takes only two/three sample when six-12 might be recommended, from varied locations, in people who are celiac suspect. Part of this is that doctors, even gastroenterologists, have been trained to think of celiac as rare--it's not high on the list of suspects, especially when the presentation is not classic (anemia, gastric complaints). But celiac is not that rare--it effects about 1.5% of Caucasians (with higher incidence among those at higher latitudes), and it has become increasingly evident it has non-gastric aspects, such as skin (dermatitis hepatiformis) and neurolgic (neuropathy, gluten ataxia) manifestations. But depending on how familiar one's doctor is with all this, one may have to educate said doctor. The Gluten File is a good place to start: http://neurotalk.psychcentral.com/thread1872.html |
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08-11-2015, 10:36 AM | #20 | |||
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As I expected, I came back negative across the board. Here's what they tested:
Celiac Disease Panel Endomysial Antibody IgA t-Transglutaminase (tTG) IgA Immunoglobulin A, Qn, Serum |
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"Thanks for this!" says: | BioBased (10-20-2015) |
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