Coeliac-Still ILL even though I avoid GLUTEN?!

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I have been diagnosed with coeliac disease for almost a year now. I have been avoiding gluten the whole time with some mistakes here and there. Now I am fully aware of the foods I can and cannot eat, I STILL get ill at least once a week. I have researched some links to coeliac and have found out that lactose intolerance is linked to it. I have now been avoiding gluten and lactose for a week, and Im still ill. I'm just wondering if anyone has any similar problems to me and have any advice at all, would be so appreciated!

Thanks

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7 Replies

  • Posted

    Coeliac uk gave me good advice about lactose (dr didnt agree) and I started to improve, even the gastroentrologist didnt agree just said it was a personal choice. Stick with the lactose free. I also tend to leave corn vegetable alone.
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  • Posted

    Agree 100% with osborne, also I'd avoid ( gluten free ) oats.

    ( BTW I've found the site coeliac dot ie & it forums very useful )

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  • Posted

    Lactose tends to be a temp intolerance when you are diagnosed coeliac, there is defo no cross contamination?you said a few slips, that can set you back, it can take upto 2 years for the gut to heal Defo sticking to the foods containing less than 20ppm of gluten? do you have the food and drink directory from Coeliac UK, that will become your bible. Recheck labels as they can change over night and my daughter felt that one I can tell you. I have been doing this for 6 years now and it does get easier and becomes second nature.
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  • Posted

    I agree, double check cross contamination, or labels and stick to the lists. Avoid lactose and corn until you are completely feeling well. Then if you ate corn and didn't feel well you would know. The same part of the villi digests lactose, so for 6 months, I used a lactaid pill for my son, to help him digest it. I didn't want him to not have it because he had stunted growth and I wanted him to have the calcium. Also important though would be some good supplements and especially the B vitamins, EFAs. 1-2 years for it to heal, don't give up.
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  • Posted

    Bit late to the party given this thread was started a year ago, but I am in exactly the same position as you - diagnosed with coeliac disease almost three years ago, I am so careful with the diet but I still get ill all the time. It's hard to tell sometimes if it's accidental gluten making me ill, a reaction to another allergen (eg lactose) or just a bug. It feels like it's been getting more and more frequent that I'm ill and I'm pretty much back to where I was before I got diagnosed - it's ruling my life, I'm tired all the time and I find it so frustrating that I don't know what is causing it! I'd be particularly interested in hearing from anyone who has had similar experiences and perhaps found a possible cause or a better way of coping.

    Thanks

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  • Posted

    Hi

    I did a lot of research whilst trying to find out what was wrong with me.... The casein in dairy products can cause a problem as well as the lactose..... Casein is the proten and is different between cows milk and goats milk for example....

    I also did a food intolerance test at home recommended by Allergy UK (Food Detective) and found this useful - there are others e,g, the York test that test for more stuff but they are much more expensive....

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    • Posted

      Are you still watching this post Chloe?

      When you say 'avoid' gluten what do you mean?  If you are just avoiding it and not cutting it out of your life altogether you will keep on glutening yourself, and the tiniest little crumb of the stuff makes us ill out of all proportion to the amount injested.

      Is someone in your household double dipping into the butter, jam or cheese?  Do you keep all your special foods on a seperate shelf apart from all the gluten containing foods in the house?

      Apologies if I'm stating the obvious. 

       

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