Gluten Free Guerrillas
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Trying to get a diagnosis

Hi, i'm a newbie here and just wanted to get a bit of advice if possible...around 2 years ago i started suffering from extreme mental and physical fatigue, and was put on iron tablets by my GP, then magnesium and then B12 but nothing worked. Last summer i started having symptoms typical with a wheat/gluten allergy, ie. stomach pain, bloating, constant need to go to the toilet, anaemia, hair falling out, tiredness, mouth ulcers, etc. I went back to my GP (and another GP at the same surgery) and both said it was 'emotional' - stress or depression. I was recommended to a kineasiologist, i know alternative therapies are debatable but i was willing to try anything at this point. I cut out everything and when i reintroduced wheat my symptoms came back. Since i cut wheat out fully my stomach problems have cleared up and he says i'm allergic to wheat not gluten. I went back to my GP and asked about a diagnosis, he sent me for a blood test but told me i don't need to eat wheat beforehand (even though i've cut it out fully for the past 3 months), is this normal? I've read other posts on here and people have all had to eat wheat/gluten before a blood test. I've also read that wheat and gluten allergies and IBS all have similar symptoms so any advice would be much appreciated. Sorry about the long post!

2 Replies

Hi there,

Sorry to hear you've been having such a horrible time, but it's great that you seem to have worked out what the problem might be.

My understanding is that you have to be eating gluten to get an accurate result from a blood test or biopsy. I was told by my GP that I would need to eat substantial amounts of gluten for at least three months to maximise the chances of getting an accurate result through a biopsy. So your doctor's advice does sound odd. Is there another doctor you could see? Perhaps you could even ask to be referred to someone more specialised in gastrointestinal issues, as this is a complex and much misunderstood area.

As far as distinguishing between coeliac disease, IBS and intolerances/allergies, I wonder how much that actually matters, when you know for sure that wheat and/or gluten has such a bad effect on you. Whatever the actual condition, the end result must surely be the same - you need to avoid consuming wheat/gluten. Knowing that - coupled with the fact that false negatives are all too common in the diagnosis of coeliac disease - you may decide not to put yourself through eating wheat/gluten again just for the sake of (possibly) getting a medical label.

It sounds as if you have been really suffering, and that what you are doing now is making a real difference. If I were you, I would listen to myself and do what I know feels right for me.

Whatever you choose to do, I really hope it works out well for you.

Best of luck!


Hi, thanks for replying! I'll see what the blood test result is, it will probably be negative but i will continue to cut out wheat anyway as it seems to be working. I doubt i will get anywhere with the other doctor at the surgery - it's such a shame some doctors aren't clued up about this sort of thing. You are right though - as long as i find a treatment that works, the name of the condition isn't important. Thanks again :)


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