Possible coeliac - advice please!

[monkeybumsmum]

Hello
I've had two blood tests now to test for coeliac disease after losing 4 babies during pregnancy. (Also have one ds, 3.) I'd heard that coeliac disease could be a cause of pg's going wrong, so just thought I'd rule it out...
Anyway, both tests have come back borderline, so I've been asked by my GP to go gluten-free for a month, and then go back for another blood test to see if the result is different. Thing is that I'm not sure whether this is the right thing to do, and if it is, how do I go about cutting out all gluten? We eat a lot of pasta and bread, and live abroad where it's not so easy to get the wonderful gluten-free stuff that I know they do in the UK.

Does anyone have any advice, either on whether the GP has give the right directions, or what on earth to do re my diet?! We've had one hell of an awful year this year, and I can't really get my head round it all...

Hi Monkeybumsmum

Sorry to hear about you loosing your babies - how sad for you all. Must be very hard.
Not an expert on coeliacs - have a husband who is. And child ? is I restrict wheat and gluten as she gets diarrhoea and wind.
Am assuming GP expects blood test to be negative without gluten in your diet?
I found Coeliac Uk very helpful site. Maybe you could contact them for advice.
Also after four miscarriages in UK you would be refered to hospital for more expert consultation with gynea doctor. So would push for that too.
As for diet - for daughter have bread maker and make gluten free bread but only nice when first made. So usually buy crackers GFree from Tescos. Rice and potatoes instead of pasta. Gluten free not very nice.
Cakes can be ok with G free flour and Gf raising agents.
Hope things improve for you now. Dont loose heart

Thanks Florence

I seem to have a bit of a mental block about this If the test was negative after this gluten free month would that mean that I do or don't have coeliac disease?

Re the mc's we have had all the tests done and there is no reason for it going wrong each time. I am very intrigued about the coeliac tests - at least if I do find out I have it then we might be able to give ourselves a better chance for the future.

Will go and have a look at the Coeliac UK website now, thank you!

Hi Monkeybumsmum. So sorry to hear about your horrid year and your losses .

In the UK, following borderline tests, your GP should refer you for an endoscopy, where a biopsy of your intestine would be done. The coeliac blood test can be unreliable, although it has improved recently, and the endoscopy is really the only sure way to diagnose the condition.

The thing is, that if you take gluten out of your diet, then your next blood test will be completely unreliable, as the ingredient required for it to be meaningful (gluten) will no longer be there. When DD1 was first diagnosed, between her blood test results and her biopsy (about 6 weeks), we weren't allowed to remove anything from her diet otherwise the test results would be skewed. So if your test was negative after a gluten free month it would mean nothing.

I would go back to the GP and ask for a referral to a gastroenterologist to take it further. I have heard that undiagnosed coeliac disease can cause problems with pregnancy...do you have other symptoms as well? Bloating, diarrhoea etc (check the coeliac website for a full list of possible symptoms in adults - I'm only an expert on symptoms in children and they're quite different).

With regards to food - there are some companies in the UK who will send food abroad. Gluten free food isn't cheap, and if they're posting it, they normally have quite high minimum order requirements. The best bread is Genius Bread, next best we've found is Juvela (but you can only get this on prescription in the UK, so not sure if you'd be able to get it overseas). If you can find Doves Farm flours, they do a great range of gluten free flours - bread, self-raising, plain, rice flour. I've not had much success with baking bread, but gluten free cakes work very well . If you can find pasta, try one made with rice and maize flour rather than cornflour - much nicer.

Hope this helps - if you need any more info, feel free to CAT me.

tkband, thank you so much! That's what i suspected wrt the next test and cutting out gluten beforehand - I just couldn't see how it could tell me anything.
I've always had a bit of a dodgy tummy, but was told years ago that it was IBS. I think the symptoms are quite similar to coeliac disease aren't they? I also have endometriosis, which just confuses the issue
I think I will take your advice and go and see a gastroenterologist to get this sorted out properly. I don't really want to upset my GP though so will have to handle it carefully. Over here (Belgium) you don't have to wait for a referral, you can go to anyone you like, but I think I'll run it past the GP first...
How long has your DD had it for? Is coeliac something that will be there for life, or could she possibly grow out of it? I work in a school, and had a little boy in our class with coeliac once, he was really poorly with it - it's just horrible.
Thanks again for your advice!

I think symptoms for IBS are similar to those for coeliac disease - and IBS sufferers also benefit from cutting gluten out of their diets, so if you don't have any joy with the gastroenterologist then it might be worth a try anyway.

DD1 was diagnosed at nearly 3, after showing symptoms as early as 7 months (I was just dismissed as a neurotic first time mum when I mentioned anything then). By the time she was diagnosed she was in a terrible state - vomiting every 2 or 3 days, horribly constipated, stick thin with a huge belly like a famine victim and she had no energy at all . She'd also not gained any weight for a year. Finally a new GP listened to me and looked at her properly and referred us and she was diagnosed within 3 months. Within 2 weeks of going gluten free she was a changed child - bounding with energy and gobbling up food with enjoyment like she never had before. My DTs also have coeliac disease - they were diagnosed about 18 months ago...they were tested when we were first told about DD1, but the tests came back negative (they are notoriously unreliable for children) but then a couple of years later I noticed some more significant symptoms and got them tested again.

Anyway, I hope you get some answers - and as I say, if you've any more questions, I'm very happy to help.

Hi moneymum, Sorry you've had an awful year and having a hard time medically.

I have IBS which is made worse by a high gluten/dairy/wheat intake.

I also had a borderline cealiacs test but endoscopy ruled it out.(to cons shock) My consultant said all cutting it out will do is produce a negative test or if IgE still high could be other allergy/ intolerence?

I had all the symptoms aneamic, internal bleeding (small amount) very underweight with bloated stomach and constant D & V.

Although I'm still anaemic the rest rectified itself and was diagnosed with IBS after ruling everything else out.

Sorry this isn't much help but I wanted you to see it from another side of someone who'd been where your are now but given the all clear.

Best of luck with consultants.