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Coeliac ??

Posted , 2 users are following.

scott17618
scott17618

Hi everyone

Im looking for help, i have had blood tests done for coeliac but have come back fine the doctor has said a blood test cannot out rule coeliac?

ive had a Colonoscopy all ok had a small lump removed.

Im now being sent for a endoscopy and have been told to eat a coeliac diet untill the appointment.

I thought i just had IBS but nothing seems to work i.e meds.

I seem to spend most days on the toilet  8 to double figures some days / bad stomache cramps/ and  bloating.

Im looking for advice or any help .

many thanks cheesygrin

1 like, 5 replies

5 Replies

  • FA54321
    FA54321 scott17618

    Posted

    This information you've been given is a bit confusing as, if they think you have coeliac disease and are going to do an endoscopy to confirm it, you actually need to continue to eat gluten until you have had the endoscopy done, as they take a biopsy to confirm Coeliacs disease.  I think you need to contact the hospital again to find out if they suspect coeliac disease, it is important, because if you are not eating gluten (ie. a coeliac diet) it will not show up and it will take longer to get a diagnosis.  Can you reply to this post if I have misunderstood you as I would not want you to have the wrong advice.
  • scott17618
    scott17618

    Posted

    hi fiona82003 thanks for your reply ,

    What you said i think is right ,

    my GP seems to think that if i eat a coeliac diet and my symptoms improve thats my answer, but yes if i have no gluten in my diet and have the  endoscopy it will be harder to diagnose for sure.

    My GP just wants me to try the  diet and hope my symtoms improve because he said i cannot continue feeling the way i am, thats why im confused confused

  • FA54321
    FA54321 scott17618

    Posted

    When I was having symptoms, I went through a difficult time due to a nurse in endoscopy, not believing me when I said I hadn't been eating gluten as it made me ill (as she said it's hidden in everything, packet etc., even though I told her I made everything from scratch and I knew that I wasn't eating any) they proceeded with the biopsy, and as I predicted ended up needing another one after I had eaten gluten again for 6 weeks, which was unbearable, and I suffered terribly and wouldn't want anyone to go through what I did.  My consultant at the hospital said it what essential to get an official diagnosis as they can give you lots if help, if it's confirmed as Coeliacs disease. (Which indeed it was). The help I get is a yearly check up with the consultant, yearly reviews with the dietitian. If required, I can get food on prescription (you also get a yearly flu jab as, Coeliacs disease effects your immune system. You also get regular bone scans, as coeliac disease can effect your bones and other help as needed. So in the long run, it's best to get a proper diagnosis. 

    Of course, it's your choice, but you may get a few years down the road, and wish you'd had it done.  Whatever you decide, good luck! 

  • scott17618
    scott17618

    Posted

    many thanks fiona82003 im going to carry on eating gluten untill i have my appointment .smile
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