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No diagnosis and tests all coming back negative?

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a09297
a09297

To give a bit of background, my brother was diagnosed a year and a half ago with Crohn's after getting surgery for a fistula. Around about the same time we realised my symptoms fitted with the same diagnosis.

Fast forward a year and a half and I've had numerous tests (CT, Upper and Lower endoscopy and a White Cell Scan) yet everything has come back negative. At this point I'm frustrated because I lost almost 10kg over about 4-5 months and I definitely hadn't been trying. My GI is puzzled but is leaning more diagnosing it as IBS which is just making me feel like I'm going crazy and that it's all in my head.

I just wondered if anyone has had all these tests come back negative before but managed to get a reason other that just IBS? I'm just curious because when the test were done I wasn't feeling as awful as I had been 6 months prior.

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2 Replies

  • IndieHannah
    IndieHannah a09297

    Posted

    30 years ago I was in the same boat.  I had 5 years of negative test results and a diagnosis of IBS and then depression.  My life was in tatters and I was struggling to hold down a job I loved and a marriage.  It took a serious infection, hospitalisation and emergency surgery to finally diagnose agrresive Stricturing Crohn's in the Terminal Ileum. 

    I can't believe that this disease is still notoriously difficult to locate and diagnose, especially with all the new tests available. 

    One thing that they do now which has really helped with diagnosis is a simple Calprotectin test (pooh sample). This will instantly rule out IBS if it comes back raised. Then there's the pill cam!!

    I really hope you get a diagnosis soon, and I hope it isn't Crohn's 

    Take care

    Hannah 

    • a09297
      a09297 IndieHannah

      Posted

      Thank you for your response. I'm so sorry for the struggle you had to find a diagnosis, from everything I've seen around it seems to be a common occurrence. 

      I'll have a chat to my doctor next time I see them. The pill cam has never been mentioned by my GI though, I wonder if they don't tend to offer it on the NHS.

      Thanks again!

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