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Allergies and intolerances

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Original poster

Did docs lie about coeliacs

9 replies

Selenaisabumface · 20/04/2015 19:03

I know i have a problem with gluten. I get all sorts of symptoms. Currently i look 7 month pregnant with wind, stomach ache and toilet issues. I also have irregular periods (i now know they are a symptom too) i asked my docs last year for a blood test for coeliacs. He said i def didn't have it as i'd be bed bound insevere pain. All he did was feel my tummy. He just recommended a low wheat diet, since wheat doesn't agree with me. Ispoke to a recently diagnosed friend who said thats completely untrue. I have a new appointment on thurs to demand a blood test. I am miserable but they just say IBS. Was my doctor lying? Or would i be bed bound ifi really had coelics? I amin flippin agony.

OP posts:

crappyday · 20/04/2015 19:07

I have a close friend recently diagnosed aged 42 with coeliacs.
She was not bed bound. Lots of tummy trouble, but thought it was bug and feeling ill.
Push for the blood test.
You will also need a biopsy I think, and you need to be eating gluten in the run up to that for it to show properly.
Doc was wrong.

Bimblepops · 20/04/2015 19:15

Doc was talking absolute rubbish, please ignore him.

I know several people with coeliac disease, all of whom were diagnosed fairly late on. NONE of them were bed bound or in severe pain, utter nonsense.

Get the blood test and even if it is negative, which it often is, insist on the biopsy as well.

Don't let your ignorant GP stop you being properly diagnosed.

Bimblepops · 20/04/2015 19:18

Have a read through the coeliac UK web site, loads of great information on here:
www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

Original poster

Selenaisabumface · 20/04/2015 19:20

Thanks. I know i have to keep eating gluten. Bleurghh.

OP posts:

Lagoonablue · 20/04/2015 19:20

GP is wrong. Contiñue to eat gluten but demand a blood test. You need to get a correct reading by eating gluten. ?ou can buy over the counter screening tests which you could do and them show results to the doc.

Yes to coeliac UK site. Symptoms are on a big range. I have it and am never bed bound!

Serafinaaa · 20/04/2015 19:25

Symptoms can be more or less severe for different people. My cousin was diagnosed as an adult after feeling tired and getting thin. My mother has been diagnosed since childhood but if she accidentally eats gluten she is severely affected and is actually bed bound.

PoshPenny · 20/04/2015 20:52

Your doctor is wrong. IBS is meant to be a diagnosis of exclusion anyway, so what tests has he run? ask for the coeliac blood test and decide what to do after that. My one came back negative and as I felt so awful I decided to go gluten free anyway which was absolutely the best thing I could have done. However I am now going to have to do a gluten trial later this year, as I've decided to find out if it's coeliac (as I suspect it is) or gluten intolerance so I need to do the biopsy. Go back and ask for the blood test. There is a lot of useful information to help you on the NHS website, and also the coeliac uk website as well. That will arm you with the facts you need.

compostheap · 20/04/2015 22:14

Get the blood test and even if it is negative, which it often is, insist on the biopsy as well.

The first line blood test is something called tTGA which has a sensitivity of 90% (i.e. 90% of people who do have coeliac will be correctly identified) and a specificity of 97% (i.e. 97% of people who don't have coeliac will be correctly identified). If the result is equivocal then NICE recommend further blood tests to try and narrow down the result. If any of these are positive then endoscopy and biopsy is needed to confirm the result, and if it clinically looks like coeliac but everything is coming back as negative then you need to see a gastroenterologist who can decide whether a biopsy is needed.

I agree that you were fobbed off and that you need to go back and request the blood test (and most GPs would do a wider screen than just this anyway), but it's a good screening test, so please don't just go in and demand a biopsy too (I do realise that the OP never said she was going to, before anyone shoots me down.....).

namechange2015 · 20/04/2015 22:21

Rubbish, I can tell you my dd had constant diarreah (sp?) before diagnosis but otherwise normal. Two other family members were subsequently diagnosed (consultant ordered tests on all of us after did dx) & didn't even have symptoms except thinness & a bit of ibs
Imo GPs are infuriatingly vague & basically know nothing about coeliac , we've had some properly dodgy advice (brown bread is ok?!?) & various other gems. Thank godforsaken coeliac UK

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