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Negative blood test and positive endoscopy

Posted , 4 users are following.

alice2849
alice2849

hello ive been experiencing symptoms of coeliac for the past 3 years i have had 2 blood tests which have both come back negative however i had an endoscopy which came back positive. I have now been told by the doctor that i have to eat loads of food containing gluten for the next 6 weeks to redo the tests  does anyone no how likely it is that i do have coeliac or has experienced anything simular.

 

1 like, 9 replies

9 Replies

  • bob1996
    bob1996 alice2849

    Posted

    Hi Alice

    The blood test for Celiac is not 100% accurate. My cousin's blood test was Negative and her endoscopy was positive. The endoscopy is the gold standard for identifying Celiac.

    You mentioned that you have to eat loads of food containing gluten for the next 6 weeks to redo the tests, which test? The blood test? There would be no need to redo the endoscopy. I'm not sure that I would keep eating gluten just to redo the blood test.

    Wish you well

    Bob

    • alice2849
      alice2849 bob1996

      Posted

      the doctor said at i need to have both the blood and the endoscopy done again and if it happens again where ones positive and one is negative i would redo both each year until both come back positive or negative

      Thanks

    • bob1996
      bob1996 alice2849

      Posted

      oh my...I would highly recommend a new doctor. And do yourself and your body a big favor and stop eating gluten today.
    • aveline
      aveline alice2849

      Posted

      Wow, grab your tests and run. This doctor sounds worse to me than all the ones who don't think to test for CD.

      You have a positive biopsy. That means that gluten is harming you. There's no reason on Earth why you should have another crumb of the stuff and this Dr. wants you to continue for years?  You can never show a negative biopsy if you're still eating gluten, and that's the point!

      Save yourself. smile

    • alice2849
      alice2849 bob1996

      Posted

      think i might look into getting a second opinion and see what they say then 

      Thanks smile

  • aveline
    aveline alice2849

    Posted

    Hi, Alice!  I believe that a better option for you would be to get your test results (biopsy slides or reports or whatnot) and bring them to another doctor for a second opinion. I'm shocked that a dr. would find positive results for enteropathy...he knows your villi are damaged...and he wants you to spend six more weeks on gluten.

    Hang in there! I believe another expert would say you've done enough and the diagnosis of CD is a lock.

    • alice2849
      alice2849 aveline

      Posted

      Thank you, i would of thought that the endoscopy would have been the most accurate way of diagnosing aswel. I think i might consider getting a second opinion 
  • FA54321
    FA54321 alice2849

    Posted

    Usually, once you gave a positive one via endoscopy, that is sufficient. My blood tests came back negative and my endoscopy positive, at that stage I was told I have coeliacs disease. Why your doctor needs a re-test doesn't seem to make sense as endoscopies are more accurate than blood tests; you can quite often get a so called 'false negative' with the blood test.
  • Sugarcube
    Sugarcube alice2849

    Posted

    Several other conditions aisde from Coeliac can cause villous atrophy on the endoscopy.  So the endoscopy needs to be considered alongside the blood tests

    Can you confirm which blood tests were done? 

     

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