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Should I go gluten-free before I've had my endoscopy tests

Posted , 5 users are following.

maxine94520
maxine94520

I recently had the results of my blood test which said I have coeliacs disease. The nurse said that I should start cutting gluten out of my diet even before I have my endoscopy tests at the hospital but most of the literature I read says that I should continue eating as I normally do until I have those tests any advice please

0 likes, 12 replies

12 Replies

  • jenny2740
    jenny2740 maxine94520

    Posted

    Even if you had blood work that confirms it. I wouldn't stop eating it til the endoscope. It can give it a false neagtive .

  • annick98074
    annick98074 maxine94520

    Posted

    I just saw my gastroenterologist and we were talking about my gluten intolerance and my biopsy which was positive but I actually had stopped eating gluten four weeks prior.  the doctor said it wouldn't make a real difference because the small intestine actually needs about a year and a half to heal from the gluten damage to the villi so if your endoscopy is in a short while and you already have a positive blood result, I'd say go gluten free. no one would ever make me go back to introducing gluten in my diet it makes me so miserable.  if at a restaurant there is hidden gluten despite my requesting for the exact components/ingredients i will break out with dermatitis herpitiformis the next day, so frustrating.

     

  • FA54321
    FA54321 maxine94520

    Posted

    Hi Maxine, the answer is absolutely NO, you need to eat gluten every day for at least 6 weeks before they do biopsies because the autoimmune response will not be there if you do it without gluten in your diet.  This nurse is ill informed.

    I wasn’t eating gluten when I had mine and the nurse said, “oh you will have been eating it, as it’s in packets etc.” When I told her I cooked everything from scratch and did not rely on ‘packets’ or instant food from anything, she wouldn’t listen, insisting she was right and I was wrong.  As a result I had to have another endoscopy done at a later date, which confirmed I did have Coeliac disease. I’m telling you this to save you from having to go through what I did, as in the long run, it takes longer to get diagnosed and longer to get better.

    • annick98074
      annick98074 FA54321

      Posted

      hi Fiona,

      that is your opinion and it is what I also believed.  did you read my whole post?  it is my gastroenterologist who told me that if you have Coeliac disease, it is not going to give you a negative result if you have been gluten free for four to six weeks because it takes at least a year to a year and a half to heal the villi in the small intestine.  i also cook from scratch, always have; I don't consider prepared packaged food generally wholesome and reliable in their ingredients: food colouring, hidden starch and sugar, preservatives etc...

    • FA54321
      FA54321 annick98074

      Posted

      With respect, that is not just my opinion, it was the opinion of MY gastroenterologist too and my reply was to Maxine not you,  and consider your reply a personal attack. Yes I read your whole post, but I don’t have to agree with you! 
  • maxine94520
    maxine94520

    Posted

    Thanks all. I have decided to continue on my usual eating habits before i go and then take it from there. Another few weeks of feeling rubbish.
    • FA54321
      FA54321 maxine94520

      Posted

      Hi Maxine, hang on in there, there’s light at the end of the tunnel. Hope the time goes by quickly for you and hope they’ve got you booked in already for your endoscopy, so not to prolong things for you.
    • maxine94520
      maxine94520 FA54321

      Posted

      Hi thanks Fiona82003 my appointment is in 8 weeks time. Will be glad to get it all sorted.
  • annick98074
    annick98074 maxine94520

    Posted

    I have a great deal of empathy for you.  Even when you will be gluten free, or at least within your control, there will be a time or other when you will be contaminated unbeknownst to you unfortunately when you go to a restaurant.  I sure know, no matter how one stresses for a gluten free choice.  Certain restaurants depend on packaged sauces, sauces that may contain that "hidden" ingredient that does you in.  How do I know?!  The day after,  the nerve pain along the ribs and the dermatitis herpetiformis breakout the next day.  If I stay home and cook all the time, no problem.  Oh well.., best wishes to you.

    Annick

  • vbforvendetta
    vbforvendetta maxine94520

    Posted

    Hi Maxine,

    ?I too am waiting for an endoscopy and I know it's frustrating as all you wanna do is get started going gluten free to hopefully get better but I was advised to keep eating normally until I have my test just to make sure the results are true. It's a pain waiting for the appointment and I've thought of just doing it anyway and going gluten free but it's worth holding out to get that proper diagnosis. I think it takes each person a different amount of time to heal after going g-free depending on the severity of it, so just to be sure I suggest carrying on as normal so your results are accurate.

    Hope your appointment comes through soon, all the best!

    • maxine94520
      maxine94520 vbforvendetta

      Posted

      I have my appointment through but still got about another eight weeks to wait. it's going to be a bit of a struggle because of all the symptoms but luckily I don't have them too severely. hope you get your appointment sorted to

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