Anybody else gluten free after negative coeliac test?

[3sEnough]

Hi - I am beginning to suspect that I'm just going mad! Have regular bloating and BAD diahorrhoea (sp?!)after wheat eating which is definitely getting worse/more acute. Have had coeliac test which came back negative but have been advised by a similar symptoms lady in health food shop to test by going gluten free for a month and then seeing if symptoms return with any particular item. Is there anything else I can do? My dh wants me to see a dietician if I end up on gluten free - do I just see them now or do I wait until the month is up....so annoying/frustrating. HELP!!

P.S. - have to go out in 2 mins so please excuse me if I don't reply in the next few hours! xx

Do you think it could be IBS? Have you kept a food diary? It's worthwhile taking the time to ascertain whether or not it is specific food that makes you feel unwell. You have to be careful when embarking on an exclusion diet. Are you being seen by an gastroenterologist for your problem?

We've never seen a dietician for our ds2 (nearly 7). He's been wheat free for 2 years - not at the moment as he is about to have a coeliac test, so we've had a lovely 6 weeks of bloating and running to the loo.
Have you had any time off wheat yet? You may find a dramatic difference very quickly - that's what happened with our ds. To us cutting out wheat doesn't seem a huge dietary problem as it can be replaced with rice etc... It probably depends on your GP - ours would never think of refering to dietician unless you couldn't eat a variety of foods.

I felt like a new woman after I stopped eating gluten/wheat. No only did the vile stomach bloating and upsets disappear but so did a lot of joint pain, brain fog and a whole load of other symptoms. I sometimes lapse on my diet and boy, do I know it when I do! Lets just say Andex sales go through the roof!!

my DH is coeliac. Try the coeliac uk website - www.coeliac.co.uk/ it does say on there that a negative result doesn't mean you don't have it. They were really helpful when DH was diagnosed, he did have a battle to get the referal from the gp to a specialist but from there it was better.

Hi - you can have a negative blood test and still have coeliac disease, which is very frustrating.

Might be worth going gluten-free for a while to see if you feel better, but then going back on the gluten (which is a pain, I know) in a while and asking for another blood test - really stock up on the gluten before your blood test. Before my biopsy my Consultant advised me to eat Shredded Wheat for breakfast and lunch - at least 4 Shredded Wheat a day!!

I went on a heavy-duty exclusion diet when I saw a private dietitian to try and finally sort out my IBS. I'd been hospitalised twice, and the daily problems were ruining my normal life.

I had suspected that, amongst other things, eating too much bread was having an effect - two of the things I reacted to later were yeast and oats.

I hadn't realised how bad my tummy problems were until, after two weeks of eating the bland stuff to "clear the system", I had no bloating, no constipation, no diarrhoea, no tummy ache, no nausea etc.

It was a long process, but I am now able to eat (in moderation) many of the things that had produced a reaction during the exclusion diet (and the reactions were very unpleasant).

My mum has put herself on a gluten-free diet as she was suffering as you are. She wouldn't see a GP about it, but she is now completely well. I guess it's not very scientific!

Thanks guys - that's really great advice - I shall do the months long exclusion and if it works, try including stuff - if I flare up again I'll go back to the dr's and see if I can do another test (after wheat loading) Thanks allxx

I had one of those not positive, not negative result (sorry can't remember the word)- and then a biopsy which was negative.

I still obviously had symptoms though and so found another doctor who does a further test (for coeliac gene or something) and I do have that.

So I gave up gluten a year ago and now am not ruled by my bowels - which is lovely. I don't think I improved a whole heap in the first month though - but enough to keep me motivated.

Hi reviving an old thread here .... iv been diagnosed with IBS for last couple of years ... had blood tests for coeliac desease early lst year came back negative , each time i see my gastro specialist says the same , IBS had flex sygmoidoscopy (spelling )last year all normal .

had 2 days gluten free so far , bM much better could be coencidence i know ,but properly formed never normally like that ...but light in colour .... paler .... is that ok ?

My symptoms are normally .

Loose mushy , beak up as soon as in water undigested food BM [blush ]
bloating
wind
some nausea

sorry to be so graphic at tea time ...
thanks

You can quite easily have even a serious intolerance to gluten without being a coeliac.

My DS2 is MASSIVELY intolerant but is not coeliac

thanks for reply ,oh really im just so sick of being told just ibs im the same stressed or not and it really gets me down
how old is your DS and is his diet G free

mu specialist is happy with his diagnosis and feels that IBS is what i have and theres no need to investigate further as bloods came back neg and other bloods normal ..

he is 12 now. He has been gluten and dairy free since he was three.

probably should mention he has ASD. Gluten and dairy intolerance very common amongst these guys.

me too & my ds, you will find fantastic support on glutenfreeforum (& celiac.com)

bump

IBS is just the name for the set of symptoms, not the cause, so yes, of course by his book you have IBS.., research it more and/or find a better dr. Some gf forums have sections on finding a good dr & share their names.