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coeliac disease

Discussion in 'Gluten-free Forum' started by johnny37, Jul 25, 2017.

  1. johnny37

    johnny37 · Well-Known Member

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    This may or may not be a gluten free thread but here goes anyway. We are told to

    I have coeliac disease, diagnosed about 5 years ago, though being somewhat stoical by nature i think ive had it a lot longer when i think of the serious stomach upsets I've always had in the past. I thought it was just my physiology and something I had to put up with! Only went to the docs when my wife started complaining about the smell! I've since found out that diabetes has a link to coeliac (auto immune disease). In which case why do they not check for it automatically instead of waiting for us to complain? Anyway, about a year ago i started getting coeliac symptoms again big time. Again, did not think about the diabetes link and put up with it for several months before going to the docs. Got to the stage where i could not get back from my dog walk without soiling my pants. Had TWO colonoscopies (to rule out cancer, etc). Last one was 25Mar. Both were not completed due to fecal matter blocking my intestine at the time of the test, despite taking the laxative as given. GI consultant was confident there was nothing more serious (like cancer). He put me on the list to attend the gastro intestinal clinic. Or colorectal clinic, i'm not sure. No-one in the system has queried why am I getting gluten symptoms when I have been on a gluten free diet for the last five years' If or if not coeliac related I'm baffled why a serious loss of bowel control has lasted for nearly a year.

    Since then my appointment has been put back four times. Latest date is 23Sep but dont hold your breath. If I have a complete remission between now and then I shall take myself off the list.

    Best news is that over the last six weeks or so symptoms are getting better, with none at all for the last week.
     
  2. Brunneria

    Brunneria Other · Guru
    Retired Moderator

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    Hi,

    Sounds like you have been having a rough time!

    Fingers crossed you get to go to that appointment in September.
    How strict are you being with your gluten free? The reason I ask is because I went GF about 6 months ago, and was amazed at the range and variety of odd things that need to be excluded to be strict - including shampoos, skincare, etc. etc.

    And have you heard of the FODMAP diet? Some people (thankfully not me!) find that they get reactions from foods that do not contain gluten, but can still cause reactions. I will look out a link. Interesting reading, even if you find it doesn't apply to you.
    https://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx

    I spent a few weeks (it was probably about 8) excluding EVERYTHING, and then slowly re-introduced things one by one to check if I got a reaction or not. My relief was huge when I discovered that I could tolerate all the FODMAP veggies! :)
     
  3. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    Johnny - I was tested for Coeliac in March, with my Endo sending me off for the test saying he was pretty certain I'd never get a diagnosis (I didn't want a diagnosis!) because I have been a low carber for some years now. He didn't recommend I carbed up for it, thank goodness.

    My test were negative, but I was told to adopt a GF diet anyway, because so many people with AI conditions do well on it. I don't have any diagnosed AI conditions, but most of my family have and he was astonished I didn't turn up something. I try not not see a failure. ;)

    Moving on, I have gone GF. I haven't gone through my shampoos and so on, but I have stopped using a form of wheat oil that I used to use as a moisturiser on some of my skin.

    Cutting to the chase; what I have found since going GF is that my sensitivity has gone through the roof and if I trip up these days it takes a couple of weeks before my innards are back to their normal state. I'll spare you the specifics, obviously.

    So, it could be that you are still, somewhere along the line, ingesting small amounts of gluten, or foods being cross contaminated by utensils used to prepare glutenous foods.

    Of course, I could be totally wrong, but one of my worst sledgehammer-like glutenings was eating out, and choosing from the GF menu. I never, ever have anything like GF bread or GF pasta, because I wouldn't have eaten them before adopting the GF way of eating, so I'm not inclined to bother now.

    "They" say it can take several weeks, if not months, to feel the benefits of an effective GF diet. I hope things stay on a good path for you. It's certainly not a pleasant way to be in the throw of some of those reactions.
     
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