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confused- please help!

Posted , 3 users are following.

an13285
an13285

I had a strong positive blood test for coeliac a few weeks ago and my GP said there was no way I wasn't coeliac given the level of antibodies. I went for an endoscopy yesterday and the doctor said that everything looked fine but took biopsies as planned. Should I eat a gf diet from now on? I am so confused- can doctors see damaged villi without a microscope?  The endoscopist seemed to be saying that she thought the blood test was inaccurate so I am unsure whether I should cut out gluten from now on or wait for my biopsy result.

1 like, 8 replies

8 Replies

  • Cemo
    Cemo an13285

    Posted

    I had the same problem. I had the blood test, it was quite high in terms of antibodies. The endoscopy showed that I had inflammation and thus gastritis issues. However not Coeliac. I finally got to grips with the fact that I may be a patient with severe anxiety and depression. As a person with anxiety/depression your brain would increase the neurone sensitivity in your stomach sometimes which causes problems with eating, stomach acid and so on. Try to keep your mind at ease through all of this whilst eating what you feel is right, as they've taken the biopsies. They can view the villi and the state it is in. Just relax and as soon as you do your body will follow.
    • an13285
      an13285 Cemo

      Posted

      Thanks for your reply. My digestive/stomach symptoms are actually fairly mild. I had malabsorption, neuropathy, infertility, extreme exhaustion and skin problems which is why I had the coeliac test- to be honest it hadn't even crossed my mind as I thought of all these things in isolation. It's tricky to know what to do when medical professionals are telling you different things. 
  • aveline
    aveline an13285

    Posted

    ACK - no...!  Studies have been done on this, and doctors are simply unable to diagnose on endoscopy!  You NEED the biopsies, from multiple sites in both the stomach and the duodenum (where the intestines begin) to really know and even then it's not a perfect test...samples can be misread and sites could seem healthy while damage is missed.

    Even as my son's Dr. told us this, she said he looked peachy and we felt like he could be celiac-free.  However, every single sample showed CD and the villi were nearly totally flattened (it's like a scale and he was one measure from the very worst...at only five years of age). sad

    I've heard a lead Dr. from the Columbia University center for Celiac Disease speak on this and he says the same things that our Dr reported. 

    I'm not wishing this on anyone...GL with the proper answer and better health!

    • an13285
      an13285 aveline

      Posted

      Thank you for that- would be easier if they didn't say anything! Think I will go GF and see what happens as I was feeling really positive about the difference it will make to my health and when I looked into coeliac more it made a lot of sense that I would have it. I don't even know how many samples they took as I had the endoscopy without throat spray and made it quite difficult for them by wriggling too much and not being the best patient redface
    • aveline
      aveline an13285

      Posted

      Hello - Just thinking of you and wondering if you heard anything about your biopsy results? Best Wishes!
    • an13285
      an13285 aveline

      Posted

      Thank you! Still no results, it's been a fortnight now so just trying to be patient. Surgery closed tomorrow and Monday too so need to wait a bit longer...On the plus side I have gone GF and am beginning to feel a wee bit better. Thanks for your kind wishes!
    • aveline
      aveline an13285

      Posted

      So frustrating to wait, but at least you're a little better on your own now...please update us when you know. Good Luck!
    • an13285
      an13285 aveline

      Posted

      Just had my results, villi are completely flattened so definite coeliac disease. My doc thinks it will take a bit of time to recover but I feel very positive that I will get better as for the past few months even getting out of bed has been a struggle!
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