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Negative Coeliac Blood Test result

Posted , 7 users are following.

elena81919
elena81919

Hello, I have just received a negative blood test result for Coeliac Disease.  I am very frustrated as I have so many of the symptoms.  Tiredness, headaches, mouth ulcers, stomach aches, constipation, bloating and diarrhoea.  My hair is also falling out.  My Dr has indicated that I may need to have a colonoscopy which I am willing to have but not sure if it is necessary!  I don't know whether I should be looking for another blood test? 

Any thoughts/advice would be appreciated.

Elena

1 like, 13 replies

13 Replies

  • natcann
    natcann elena81919

    Posted

    Hi there. There are often false negatives for CD. My grandson had 2 before his parents asked for the biopsy ( knowing my history and how ill I became before diagnosis) . His biopsy was positive and he has now been GF for a year and is a different child. My other grandchildren had tests to see if they carried the gene. If you have the gene it does not mean that CD will develop but you cannot have CD if you haven't got the gene. Some carry it some don't. The families had to pay for this because the GPs won't order it ( funding)unless they have all the symptoms of CD>. I don't know if this will be any help to you. We all react differently I think to having CD, - I didn't have the bowel symptoms but had most of the others and maybe that's why it took a long time to diagnose me. Good luck

  • patricia_11100
    patricia_11100 elena81919

    Posted

    The more you read the more you find out that most doctors dont know much about celiac or gluten. Could you find a gasterinterologist that knows about celiac? If you have all of those symptoms it's only going to get worse. The best thing you could do is to go gluten free. If you test positive that's what your going to have to do anyway. I'm trying that myself right now. Hope this helps

    • elena81919
      elena81919 patricia_11100

      Posted

      I would do that except I have read a lot that you shouldn't go gluten free until you have had a positive result!

    • patricia_11100
      patricia_11100 elena81919

      Posted

      I know what you mean I've read that too. I had an endoscopy before having my gallbladder out. It suggest that I may have celiac or gluten sensitive but would need to go gluten free. Guess what ? No one ever told me that. I've been suffering with pain and other things since 2015 when I had GB out. I'm piecing all these things together right now because I am looking at test results myself ! I'm tired of doctors. I'm not sure what a doctor will do if they diagnosis you besides go gluten free. For me I've had so many other test etc... to try and find out why I have this pain all the time and they don't find anything . Good luck

  • marg04364
    marg04364 elena81919

    Posted

    People often get false negatives with the blood test. You need to have a gastroscopy / biopsy and you need to be eating gluten for six weeks beforehand. (Equivalent to 4 slices of bread a day)
  • marg04364
    marg04364 elena81919

    Posted

    The genes associated with susceptibility to coeliac disease are HLA DQ2 and HLA DQ8. Either one or both of these genes are present in the majority of people with coeliac disease.  Also, you mention hair loss..  and alopecia is associated with CD. The average time to be diagnosed with CD in Australia is 9 years.. and in the UK its 13 years  so keep pushing the doctors!
  • isobel60223
    isobel60223 elena81919

    Posted

    I have just been for a blood test,  which i thought was for various allegies,  the nurse said it was for coeliac disease.  I have had diarrhoea  a lot recently and find my stomach really gurgles at night,  i bet I get a negative result because I have been avoiding foods because I didnt want to get diarrhoea!  I have been eating gluten free bread. I did have stomach ache all  day yesterday.  Is coeliac the same as IBS?  I am so ignorant of these things
    • philip49799
      philip49799 isobel60223

      Posted

      Coeliac is an auto immune disease. IBS isn't, but can be associated with gluten intolerance. All these things are really horrible and need careful management and it takes time. There vare some VG Forums of Farcerook and if you ignore the occasional Trolling by idiots and some pedants who think they know everything about anything, then you can find a lot of support and advice. Good luck.

    • isobel60223
      isobel60223 philip49799

      Posted

      Thank you, I did get a negative blood test, like I thought. I will look on Facebook, which site do you recommend?
    • philip49799
      philip49799 isobel60223

      Posted

      Hi. There are a few. I have tried a couple but got fed up with some of the rather aggressive "you can't be Coeliac" comments from some people. Try them out and see if yoiu find one that's friendly in your eyes as there is loads of advice out there. 

      ATB

      Phil

    • isobel60223
      isobel60223 philip49799

      Posted

      Thanks again, I will look but as a coward, I may be too scared to comment!

       

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