Gluten Challenge

I've just had a letter from GI dept at local hospital telling me to ring on Monday to arrange my consult. This is great news (decades of problems inc daily diarrhoea, many celiac type symptoms, borderline celiac results a years ago that I only found out about recently when new GP looked back through the results). My GP is fabulous, but when I asked her whether i should start going back on gluten (assuming they will test for celiacs) she looked worried and said how awful that would be for me, and I should wait to see the consultant. I've been off gluten for over a year as was trying low-fodmaps assuming IBS of some sort.

To be honest, I can't imagine any way they will NOT want me back on gluten to test, so have off my own back decided to get going with it. Mainly because I've just worked out I'm otherwise in danger of spending the summer holidays miserable (we have a 6 year old) and I really REALLY don't want to spend all the summer hols in the loos :D

I've had 2 slices of toast with marmite (which was heaven) 30 minutes ago and I am now blown up like a balloon (which is less heavenly...)

I'm not mad to be getting going with this am I?

6 Replies

  • Most of the consulatants will ask you to go back on it before they do an endoscopy & I thnk the norm is to eat it for 6 weeks. It is really a personal choice as to whether you want to do that or not to get a firm diagnosis. I refused to eat it again, as I didn't want to go backwatds in how I felt & they did the endoscopy anyway. There was no damage, but they could see there had been & confirmed that I was a coeliac. The end result was the same, I just stay off gluten, however, have the annual appt with dietician & annual blood tests. Think it depends what your gastro consultant is like. Sounds like yu have a great gp, who would support you if you didn't eat it & I am sure she would give you the annual blood tests & even arrange for a bone scan. Good luck

  • thanks virgolizzy. I didn't realise they could see recovered damage, that's interesting. I don't blame you for wanting to avoid going back on it - i suspect my symptoms aren't as bad as lots of people, and think I probably need to know that it's something as serious as coeliac (if it is) to keep me on the straight and narrow. I actually don't feel that bad this morning (slightly crampy and bloated and awake a lot in the night with gas, but definitely been worse!). Before I stopped the gluten (and many many other things - low-fodmap diet) a year ago I was nauseous, diarrhea, very lightheaded, mouth sores etc. I;m hoping the culprit will turn out to be one of the many other things I've been avoiding but do feel I need to rule out coeliacs (as obviously more serious than many other things) due to borderline tTG result. Thanks again.

  • Totally understand why you are doing it & I agree unless you know, it will be harder to give it up permanently.

    In all honesty, I don't think you can see that there was damage & I got a copy of the report & it didn't say that on the endoscopy report. i think she just said it as everything else pointed that way, including the blood tests.

    Good luck & fongers crossed you find the culprit?

  • I don`t think you are mad Tilly.

    I stopped eating gluten because I had really bad diarrhoea with griping pains and the symptoms stopped almost immediately off gluten.

    My GP did a blood test and it came back with antibodies and so I was referred to a Consultant GI. She told me to go back on gluten and my gastroscopy is next Saturday morning! I starting eating gluten with dread but thankfully although I am a bit bloated and windy, the nasty diarrhoea and pains have not happened. So I have less than a week on gluten now til the test and the gluten challenge has not been as bad as I expected.

    If the gluten had affected me as it has in the past, I don`t think I could have endured 6 weeks. Will soon know if its CD or not. Good luck with your challenge Tilly. Let us know how you get on. Best wishes. Diane

  • virgolizzy thank you :)

    liver-bird sounds a very similar experience to mine - i couldn't believe how my D and wind changed when i went on low-fodmap (which obviously also includes no gluten), almost overnight. Very good luck with your endoscopy I will be keeping an eye out to see how you get on :)

    Also very similar now - i'm very surprised that the D hasn't returned in full - not great this morning, but really not awful. However the thing that has surprised me (and I know could be a coincidence) is how bad my twitchy legs were last night - like I've never had before. I didn't really believe (not sure why ;) ) there could be a link with diet but it does seem odd. I've had it since my teens (a very long time ago now) but last night was verging on the laughable (sense of humour failure around 2 am :D ). I've never seen the doc about it, thought in the grand scheme of things I could live with it. But weird, very weird. Hey ho, only 5 weeks and 2 days left!

  • hey liver-bird did you have your endoscopy? Hope it went ok. Tillyxx

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