Celiac, more questions!
#60860 - 04/13/04 03:49 PM
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rlan
Reged: 06/05/03
Posts: 161
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Today, I finally had my endoscopy. It was easy!! The Dr. said everything was find but I don't even remember talking to him. I hate that they don't wait till your coherent and can ask questions. Anyways, he told my husband that I had sprue antibodies but I don't have symptoms. So, I'm confused, I looked back at all the posts but didn't find the answer so I'm posting again, I hope that's alright. I think it was Kimm who was being tested, how did it go? Anyways, I'm trying to understand if my dr. is just convinced I don't have celiac and is being very subjective regardless of results. I'm confused and of course my husband didn't know what questions to ask! The dr. said to call him in a weeek he did a biopsy..don't you just hate the wait? Thanks for your help in advance!!
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Unfortunately this isn't the answer to your question.
I had a similar diagnosis a year ago and have no excuse really for not knowing by now what it all means. I had very high levels of "gluten antibodies" in my blood test, but my biopsy checked out normal. So I was told maybe I had a wheat intolerance but definitely not celiacs. Maybe your doc's reference to sprue antibodies is the same thing, maybe not, I don't know.
Then after 6 months of wheat free eating and feeling as bad or worse than ever, my gastro. said well I guess just eat wheat then. And when I said what about the blood test and the high #'s of gluten antibodies, she said oh that test doesn't really mean anything! hmmm... So I hope to speak to a dietician or someone, who could tell me a little more authoritatively what those blood test #'s mean!!
I've asked this question on the boards but gotten no response in the past. Maybe you and I can get to the bottom of this....
Dan
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Im not really sure but my doctor told me that you can have the antibodies and still NOT have Celiac. He said that if it is in your family at all - you can carry the antibodies and not actually have it. That was my understanding anyways but Im not completely sure!
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celiac sprue
#60875 - 04/13/04 05:28 PM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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i recommend that you go to celiac.com and post your questions there... it's a very nicely done website that specializes in gluten-free living and celiac issues. you'll get a knowledgeable answer there, i'm sure...
...then come back here, of course! 
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It is my understanding that the rate of a false positives (and negatives) is very common with the blood test. The gold standard lays in the endoscope test. Even that can yield a false negative if the person being tested has avoided gluten for a number of weeks. It all boils down to how you feel with you go off wheat/barley/rye even though a test yields a negative result. Then too, Celiac disease can mask itself as IBS so in some respects it may be difficult to know what you have unless you test positive with the villa biopsy (I think that's right) during the endoscope. Then too, there is the posibility you may have both.
But your best bet is to do what JenX said and go to celiac.com. They'll have the answers you seek.
The newest I've read is that we have more celiac than ever before and it seems to be on the rise, something like up to 1 in 5 over the next 20 years.
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Also, go to the IBS Library on this site and look under Celiac, I have learned alot there as well.
Cindy
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