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Advice please!

Posted , 5 users are following.

lorraine21138
lorraine21138

Hello - my gp has referred me to a gastro due to a blood test I had recently being raised.  (Not sure what test it was but apparently it should have been less than 5 and it was 25 which indicated potential Coeliac?)  My gastro appointment isn't until the end of March, but my GP says I must continue eating all the stuff I currently do so that any further tests are accurate.  As the appointment is a way off and I'm in quite a bit of discomfort - could I cut back on gluten until just before the appointment and then eat it again?  Sorry if that's an obvious questions but I'm new to all this!  Thanks in advance.

1 like, 9 replies

9 Replies

  • karlzemmo
    karlzemmo lorraine21138

    Posted

    Hi Lorraine21138,

    I was diagnosed early on this year with Ceoliac disease and I had the same problem with appointments being quite far in the distance, especially with the amount of discomfort I was in. I however spoke to my GP and explained that I was so ill from eating gluten, he then allowed me to cut it out until about 2 weeks prior to my appointment. The two weeks prior I added gluten back into my diet so when I was tested it would allow the results to fully see my reaction to gluten.

    I would 100% double check with your own GP to discuss what is best for you, however I found this gave me some relief as I was so ill, and I can imagine how uncomfortable it would be for you.

    Hope this helps!

    • lorraine21138
      lorraine21138 karlzemmo

      Posted

      Thank you for your reply.  I still have my doubts whether it is Coeliac - I'm 50 years old and although I have suffered on and off with stomach issues over the years I did test negative for it about ten years back - I'm not sure it  could have suddenly developed like this!  Although - daft thing to say - if it is that, at least I would at last have an answer to this misery!  Thanks again for replying and Happy Christmas.

    • chris2
      chris2 karlzemmo

      Posted

      That's interesting. If 2 weeks can be sufficient, why make everyone wait so long?

      I'll certainly be asking about this if I find myself with a long wait.

  • marg04364
    marg04364 lorraine21138

    Posted

    Your GP is right that you MUST keep eating gluten for accurate diagnosis.  But he should be doing a gastroscopy/biopsy to check if coeliac or not. THEN you can go off gluten.
    • chris2
      chris2 marg04364

      Posted

      The problem is - as I understand it - is that GPs don't normally do these tests - they only do the blood test then refer you for a hospital outpatient appointment if there is a suspicion of coeliac. I'm at the start of this process. I don't even see the GP till next week and I'm dreading the wait if it looks like coeliac.

    • marg04364
      marg04364 chris2

      Posted

      Hi Chris  You really need to push the doctors .. they don't test enough for coeliac disease.. which is why four out of five people who have it don't know they have it..  And it causes so many other problems when it goes undiagnosed. Hope you can hang in there and keep eating gluten till you have the gastroscopy.. at least 4 serves a day (equivalent to 4 slices of bread a day)   Good luck!

  • kimbo29
    kimbo29 lorraine21138

    Posted

    I am 49 and was just diagnosed with coeliac with several blood tests. My doctor says a biopsy is not necessary as it would not be as conclusive as multiple positive blood markers. There is a greater chance of a biopsy missing damage that is occuring than that my blood work would be wrong. I had a positive Ttg & ema test. My understanding is that you do need to continue the gluten, but waiting until March is ridiculous. I would find another doctor or call the office & beg for an earlier appointment.  I only had to wait a week for an endoscopy.

  • lorraine21138
    lorraine21138

    Posted

    Hi all - well in the end I paid for an initial private consultation to get the ball rolling and I'm in for endoscopy next Tuesday.  I am terrified and already stressed about it.  I know its not a massive issue, but I've had three endoscopies already while they've been trying to find out whats wrong with me - had hiatus hernia and reflux diagnosed but as they weren't looking for coeliac then I guess they didn't think to biopsy for that so I've got to do it again.  Had an awful experience last time - they apparently sedated me but it wasn't enough, I clearly remember everything even down to watching the scope on the monitor!  Unfortunately I've been told by the Consultant that biopsy is the only way they can diagnose me - but I'm half tempted to cancel it.  My TTG IGA was only 25 which, although I know is still positive, isn't that high and I'm thinking that if only a little bit of damage has been done I'll have to go through the procedure and then still be told the results were negative.  Sorry just waffling - just nervous sad

    • marg04364
      marg04364 lorraine21138

      Posted

      Feeling for you Lorraine.. and hope it wont be too bad.. I think the doctors can give a general anaesthetic if need be? Although they prefer not.  Good luck.
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