Have any dismissed suspiect coeliacs got their answers yet?

I've had lots of chats with people on here with similar symptoms to mine, with negative outcomes of different tests. I wondered if anyone had seen any progress or direction? I was up in excrutiating pain last night and will be making a trip back to the doctors but its frustrating to think they'll dismiss me again!

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  • Hi Abby,

    Check out my post yesterday, A Cure By 2026. It's a link to Uni of Chicago and on it you will find some videos of a gastroent scientist talking about getting negative blood results and also about gluten sensitivity, rather than full blown coeliac.

    You could also consider IBS and ask for a referral to a dietician. Maybe they can put you on a LowFODMAP diet (eliminates known causes of IBS by removing certain fruit and veg) to find the cause of your pain. There is a largish facebook group of low FODMAP dieters if you wanted more info, but I wouldn't recommend doing the diet without a dietician's advice.

  • want to give you hope if it turns out to be IBS - just been on the core part of low FODMAP for six weeks - wonderful. the relief at getting rid of nearly all the symptoms and actually being able to sleep for 11 nights in a row without constant cramp and all the other issues. there are now more and more hospitals making this diet available. it involves significantly reducing five sugars from the diet for up to 8 weeks. These are Fructose, Polyols (mainly stoned fruit) fructans (long chain fructose) which includes wheat rye onion garlic GOS (beans and pulses) and lactose (dairy food). You need to stick rigidly to the diet. After the symptoms go you introduce specific sugars one by one from each of these groups to see which one is triggering the symptoms. this last process takes around 5 weeks. You will probably (but not certainly) know if it is going to work about two weeks into the 8 because the symptoms start diminishing. A certain amount of courage is needed to reintroduce! but the dietician said that you want to cut the costs if you can and to expand what is a restricted diet. the core part is more expensive because you need to use alternatives like soya (that will tell you if GOS is a problem or not) or lactofree products for the dairy; gluten free for the wheat and you are given a list of fruit and veg that is safe to eat during the initial period. (sometimes you can be intolerant to some of those). I would certainly give it a try. it would be very unusual if you were intolerant to all the suguars. Ask your GP to refer you. If he wont see if you can see a dietician privately for a couple of sessions to brief you. that is all that is needed. refer to the IBS network website that has a self management plan on how to control the symptoms. hope this works. If it doesnt you must insist on your doctor doing tests to see if there are other diseases present.

  • Hazel,

    Amazing isn't it! I'm still reintroducing, which is becoming a long process as there are certain days at work when I just can't be ill. Did you notice any particular patterns? I think it might be all fructans with me (but reintroduced fructose, most polyols and most GOS). I already knew I was Lactose intolerant and coeliac.

  • Hi Abby - did the Dr not consider doing a test for IgG and IgA? Have they also considered whether you need a scan or whether there's other problems causing your problems? Remember IBS is usually a catch all for 'I don't know what's wrong with the patient' - don't be fobbed off with that!

  • FODMAP does sound interesting.

    Yes, Fiona, I agree with your IBS theory, for years and years the doctors have said I'm stressed 'and that's bound to upset anyone's stomach'. I've definitely shown refusal to be fobbed, but they seem adamant that I'm not 'unwell', because I seem 'healthy'. My reply to that is- if being in pain almost everyday is healthy, I'd like to know what you class as unhealthy.

    I think I'll go back and ask specifically for both of those. I did have a negative blood screening, but had not been on a gluten rich diet at all, so I'm not convinced enough yet.

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