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lotsaquestions Joined: 18 Sep 2007 Posts: 29	Posted: Sat Oct 06, 2007 3:30 pm    Post subject: Blood test/endoscopy question Has anybody ever had all negative blood tests, but positive endoscopy? Is it possible?
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aklap Joined: 02 Oct 2004 Posts: 8783 Location: WI, USA	Posted: Sat Oct 06, 2007 4:30 pm    Post subject: Hi Lots, Yes, it is possible and does happen. I can't say if I remember anyone here with that scenario. Some docs say Sero-negative/Biopsy positive may occur in up to 20% of the CD patient. The tTG test [the one tests that docs use most heavily] is known to be great at detecting total villous atrophy [your villi is completely toast], but it's effectiveness drops as the amount of damage drops. What's sad is the often the patients are told [based on this test] that they don't have CD - when in reality they could or do have it. I hope that helps. _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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lotsaquestions Joined: 18 Sep 2007 Posts: 29	Posted: Sat Oct 06, 2007 4:45 pm    Post subject: So if you don't have monstrous villous atrophy, the tTG may come back negative? I just think it would be hard to make the decision to have an invasive procedure if the bloodwork was negative. I guess we'll see what I REALLY feel in a few days when my blood test results come back. Whatever they may be, I'm sure I'll be on here with a bunch more questions!
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nancw Joined: 04 Oct 2006 Posts: 909 Location: Denver, CO	Posted: Sat Oct 06, 2007 4:57 pm    Post subject: I had an endoscopy yesterday and it was totally tolerable (says she who despises and shuns invasive procedures). If you have the insurance and the time, go for it. Better to know now, rather than go GF seeking relief and face not ever knowing, or doing a gluten challenge later. I had negative bloodwork (GF all of 3 weeks) and no endoscopy a year & 1/2 ago, so I have no diagnosis. Doc says he saw blunted villi on yesterday's scope (I thought they couldn't tell from the endoscope, only the pathologist could tell?), so either I'm getting gluten somewhere - which I really doubt - or something else is causing it. Fear not the scope, just make sure your doc takes lots of biopsies. We'll be standing by to hear the bloodwork results. _________________ Nance gluten, dairy, soy, rice, yeast and 99% grain-free
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lotsaquestions Joined: 18 Sep 2007 Posts: 29	Posted: Sat Oct 06, 2007 5:02 pm    Post subject: nancw wrote: Fear not the scope, just make sure your doc takes lots of biopsies. We'll be standing by to hear the bloodwork results. So...how do you handle that? Before they put you under you say, 'hey, doc...make sure you take as many biopsies as possible...just in case you had no idea what you were doing...' sorry. I realize it's good to be informed and be armed with whatever knowledge is possible, but I always feel like the doctor is going to think I'm trying to tell him/her how to do his/her job. How DO you handle that?
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nancw Joined: 04 Oct 2006 Posts: 909 Location: Denver, CO	Posted: Sat Oct 06, 2007 5:09 pm    Post subject: I think others on the forum are better equipped to answer this question. Luckily it was easy for me - I'm seeing a doc who is serious and committed to answers for his Celiac and food intolerant patients: Dr. Lewey, and he told me that he would take lots of biopsies. I made an appointment with him after hearing about him here on this forum, and learning he is an hour away from me. _________________ Nance gluten, dairy, soy, rice, yeast and 99% grain-free
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lotsaquestions Joined: 18 Sep 2007 Posts: 29	Posted: Sat Oct 06, 2007 5:12 pm    Post subject: nancw wrote: Luckily it was easy for me - I'm seeing a doc who is serious and committed to answers for his Celiac and food intolerant patients: Dr. Lewey How nice! Is there some sort of "top doc" list of recommended doctors categoried by state on this site? That would be cool.
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Tim Joined: 12 Apr 2006 Posts: 65	Posted: Sat Oct 06, 2007 7:19 pm    Post subject: My biopsy came back as "villas blunting; in absence of clinical symptoms, confirm with blood test". So I was a "maybe" based on the physical evidence. The blood test came back in the "maybe" range. My MD said that its like being pregnant, you've got CD or you don't. Subsequent biopsies and blood work look healthy and normal. So I probably have it. BTW, my EDG was for GERD. The duodenal biopsy was a prophylactic measure by my MD. I had no symptoms of CD. I don't think you have to ask a gastro to take a biopsy of the duodenum -- that's what they do.
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aklap Joined: 02 Oct 2004 Posts: 8783 Location: WI, USA	Posted: Sat Oct 06, 2007 7:40 pm    Post subject: Tim wrote: I don't think you have to ask a gastro to take a biopsy of the duodenum -- that's what they do. Not mine...I had to ask for it...then he wasn't too willing. Like you I went in for GERD. He only took 3 or 4 samples. Getting biopsies during an EGD is not a normal occurrence [it should be...but it isn't]. You do need to make sure they take lots of samples [see post below] _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa Last edited by aklap on Sat Oct 06, 2007 7:45 pm; edited 1 time in total
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aklap Joined: 02 Oct 2004 Posts: 8783 Location: WI, USA	Posted: Sat Oct 06, 2007 7:44 pm    Post subject: Gastros in the know will take 15 or more samples. How many samples are required to insure accurate intestinal biopsy results for CD diagnosis? Quote: QUESTION: I was informed by someone who heard Dr. Rudert speak at the Oct CSA Conference in Atlanta that up to 15 samples are now considered required to insure accurate intestinal biopsy results for CD diagnosis. Is there an article that has been published that can be supplied to gastroenterologists to document this information? DR. RUDERT: When I perform an endoscopy I generally obtain 15 or more samples from the jejunum/duodenum in order to ensure accurate intestinal biopsy results. This is not, unfortunately, an agreed upon practice and there are no publications that exist that indicate a minimal sample number that should be obtained. Unfortunately, most Gastroenterologists do not obtain any small bowel biopsies during routine endoscopic procedures unless the duodenum appears abnormal. As I have mentioned in this column and in other publications, both myself and Joe Murray, M.D. from the Mayo Clinic, feel that all individuals should have small bowel biopsies undergoing EGD whether or not Celiac Disease is suspect. This is part of Clan Thompson's Ask the Doctor. Well worth the time to look thru for those that are starting out their testing quest! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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aklap Joined: 02 Oct 2004 Posts: 8783 Location: WI, USA	Posted: Sun Oct 07, 2007 12:51 am    Post subject: Seronegative Celiac Disease: Increased Prevalence with Lesser Degrees of Villous Atrophy Quote: Abstract: Our aim was to assess differences in the sensitivities of serologic tests used for the diagnosis of celiac disease among patients with varying degrees of villous atrophy. Among 115 adults with biopsy-proven celiac disease who fulfilled strict criteria, including serologic testing at the time of diagnosis and response to a gluten-free diet, 71% had total villous atrophy and 29% partial villous atrophy. Endomysial antibody was positive in 77% of those with total villous atrophy, compared to 33% with partial villous atrophy (P < 0.001). There was no difference in sensitivity when the type of presentation (classical vs. silent) was compared. Endomysial antibody-positive and negative patients did not differ with respect to age at diagnosis, duration of symptoms, mode of presentation, or family history of celiac disease. All anti-tissue transglutaminase-positive patients had TVA on biopsy. Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature. _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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