I have been ill since I was a child, various things that left me convinced that I had fibromyalgia. After years of begging to be listened to, I (finally) got referred to the local CFS clinic but have been told I've not got that, they recommended to my doctor that I be referred for further investigation into a fibromyalgia diagnosis, among other things, but doctor is refusing to refer me to anything (though I relocate in September so will pursue further then).
However, in desperation 3 or 4 years ago, after being ignored and fobbed off by numerous doctors for years, I gave up eating gluten as a friend kept suggesting to try it. I did, not thinking that it would work at all, and my symptoms got a bit better within weeks (some, like my bladder and brain fog, within days) and within a few months I was much much better though still had these issues to an extent. I have eaten gluten occasionally since but now i know my reaction to it I only ever have it very occasionally and only in small amounts when I knew I'm home the next day and can deal with the aftermath (headache, feeling hungover, bowel issues, fogginess, etc) I also have things with traces of gluten in but again, it's limited and I don't react very badly to that as long as it's not regular.
Ihave been tested for gluten intolerance as part of the CFS referral process and it came back negative, but this was over a year after I had given it up. It has since occurred to me from looking at the symptoms that my symptoms could, to a massive extent, be a gluten intolerance or coeliac disease, rather than gluten being a trigger for what I still think is fibromyalgia, which is what I've always assumed.
I noW know that in order to get an accurate reading I'd need to start eating gluten again for a certain amount of time before having the tests done. But that would mean the symptoms coming back horribly for that time and probably by the end of a 6 week period I would be struggling again. I'm currently pregnant so definitely not planning to do it now or any time early in baby's life, but DH and I are considering whether I should get tested properly next year when we'll have a lot of practical family support available if I get ill again for that short period.
I'm so fed up of people being dicks about me not eating gluten and being quizzed publicly and loudly by family members about why I'm joining in a fad and being so ridiculous. It is a separate issue (my family don't believe that I have anything wrong with me so my not eating gluten because it affects my state of health is bullshit to them) but if I have got coeliac disease or a bonfide gluten intolerance it would make life so much fucking easier to have both family believe me and a doctor believe me. I'm so fed up of being painted as a fucking hypochondriac when I know that something is actually wrong! But is it really worth the symptoms coming back just to check that?!
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If you suspect coeliac disease or gluten intolerance but don't eat gluten, would you start to eat it again to be tested?
14 replies
RattieOfCatan · 06/07/2016 13:42
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