Hiya I stumbled across this forum, I've been struggling with bloating etc for a few years and told its IBS , I also suffer with back problem

And past two years numbness and pins n needles to hands feet and face, nerve pain the list goes on and on . I take a lot of morphine based mess only like I said I stumbled across this site and couldn't believe what I was reading .... I felt like someone was inside my head and body , my gps had been blaming all my symptoms on anything but coeliac disease. I ate gluten free for 2 weeks and felt like superwoman I couldn't believe it so I took my findings to my GP who is being great but unfortunately I need to now eat gluten for 4 weeks to get a blood test , I'm currently 2 weeks in and feeling really ill , any hints n tips to give me best chance with my blood test would be very gratefully received , apologies for poor grammar just kept typing , thanks in advance

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  • the old diagnosis problem rears its head again, for a definite diagnosis according to the medical world you have to do this for a biopsy/ blood test…….. I JUST WONDER WHEN THEY WILL FIND A BETTER WAY. eating gluten again just makes one sick, and damages the gut more, how can this be right, I have just had an acute reaction to oats and it was so awful I really feel sorry for you having to do this for two more weeks, I was diagnosed before the blood tests and just had a brief gluten challenge, sorry you have to endure this

  • Courage! Since you're already two weeks into the challenge you are already half way there. And if you stop now then you have suffered for two weeks for no reason.

    Diagnosis is usually by biopsy and not blood test alone - so ask your GP whether it is possible to have that lined up too... otherwise there will be a delay between getting the blood test results and booking you in for endoscopy.

    Blood tests are helpful, but not definitive. If your blood test is positive they would refer you for biopsy... if they would refer you even if your blood tests are negative (because of your strong reaction to eating wheat/gluten) then they might as well do it now.

    It may be IBS after all though because wheat is one of the problem foods in IBS, but because of the fructans content not just the gluten. Have you heard of the FODMAPs diet? It's worth a look... some people have problems with both gluten and fructans.

  • Thank you for your replies , I like the idea of lining a consultant appointment up . Also my daughter is like a slice of me and my mum about 80% of me symptoms wise. I recently had a scan and it showed an enlarged liver and I had my gallbladder removed at 29 , over 10 years ago I've been reading online these two things could also be linked? My daughter is currently eating gluten with me so I will keep you posted . Thanks again for your help x

  • I think I and right .... current thinking re IBS ...... IBS should only be diagnosed AFTER Coeliac disease has been ruled out .... NICE guidelines I think. Now for the ghastly bit ...... don't give up gluten after blood test/results 'cos it's likely you'll need an endoscopy. Dr's can refer you directly for this on pos blood test to save time; less suffering for you/greater likelihood of correct diagnosis. It's is SO worth it going the whole sh***y route; who wants to struggle if when elderly you have to plead for GF food 'cos you've not got an official diagnosis, oh and meantimes all other related health issues will be monitored eg calcium levels & osteoporosis etc. Oh and one last thing....... for me the numbness etc was one of my first symptoms and that went after I was diagnosed hypothyroid and began meds. Often these disease go together !

  • Thank you Malago I have just seen your reply , blood tests are on Wednesday so hopefully we can start getting the better of all these lousy symptoms . This forum is amazing x

  • Yes it is. Keep us up to date on your bloods if you want to.

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