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Refractory Coeliac

Posted , 4 users are following.

zhineh84769
zhineh84769

I've had coeliac disease for over 15 years and have followed the strictest of diets which my bloods surprisingly getting worse, the doctors and dietician are not sure why my bloods are running so high and we can't seem to find an answer, I've been tested for refractory coeliac once before we a negative result however being tested again soon for it as we can't find the source. Has anyone else been diagnosed with this or have any idea what could be classed as gluten free but found it isn't?

Help!

1 like, 4 replies

4 Replies

  • laurie99463
    laurie99463 zhineh84769

    Posted

    Hi Zhineh84769,

    Have you fully explored non-glutenous products? I experienced the same circumstances until I recognized the IBS diet and FODMAP listed foods. While I do not have IBS, my body is extremely sensitive to fructose and fats - yes, that limits the diet even more... Everything from apples to dark greens, all "good foods" will set me into my autoimmune attack. Check that out if you haven't already done so. BTW, I can eat white fish but NOT salmon or tuna ... too much fat!

     

    • zhineh84769
      zhineh84769 laurie99463

      Posted

      Thank you so much for your response. I've never heard of the FODMAP diet or been told about it until now so I will definitely do some research and reading, desperate to find the cause in a food product rather than more medication!

      Thanks again!

      Zhineh

  • lynda01728
    lynda01728 zhineh84769

    Posted

    Hi Zhineh

    If only life where that simple.....avoid gluten and you'll be fine except I wasn't either.

    There are foods that mimic gluten eg I can't tollerate oats, millet or huge amounts of any carbs.

    I eventually started on the FODMAP diet and have pretty much stuck with it ever since with very good results but it is limiting.

    I'm afraid once gluten has wrecked your gut it will never be the same again.

    I was so ill after eating brocoli! I can't have any dairy,apples, dried fruits, sweet potato fine, normal only small amounts, no shop bought gf bread....the list is endless..... and I'm a vegetarian by choice. 

    It's 3 years since I was diagnosed and I am finally feeling well if I stick to what I know my body can cope with....which has largely been down to trial and error. Even tonight I am sat here wondering why my inside bottom lip feels like sandpaper......could it possibly be a new lip gloss I bought a few days ago.

    It wont be easy but hang on in there.....you are not alone my friend....this disease is a horrible thing.....don't let it get the better of you.

    Best wishes

    Lyn

    • zhineh84769
      zhineh84769 lynda01728

      Posted

      Thanks so much for your repky! I've tried and tested other food groups but can't put my finger on what the trigger is!

      I will look into and research this FODMAP diet as I've never heard of it?!

      I'm happy to try anything, I'm that desperate!

      Hope you're doing well and that the new lipgloss isn't the issue! Such a nuisance having to be so particular and investigate ingredients in everything you use!

      I won't let it get me down, I just need to find the source of trouble and beat it! Haha.

      Thanks again!

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