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High probability of celiac disease

(9 Posts)
LunaLoveFood Fri 14-Aug-20 14:11:03

I've just had blood test results back from gp who have said that the test for celiac disease came back as a high probability of having it. I am now being referred to hospital and my gp has advised me to stop eating gluten.

Since the phone call (at 8 am) I've been doing lots of research which have given me lots of questions which I can't find answers to, any help would be great.

1. The gp has suggested I stop eating gluten now, however the NHS website states I should continue eating it so that further tests will be accurate.
Which do I do? Stop or continue?

2. All the research I have read states if you get a positive blood test the endoscopy and biopsy will give the same result. As my blood results state high probability of celiac disease any idea what the likelihood of me having it will be.

And any positive stories of endoscopy tests or living with celiac disease much appreciated.

Thank you .

OP’s posts: |
dementedpixie Fri 14-Aug-20 14:14:49

If you are getting further testing then surely you should continue eating gluten so you don't get a false negative.

LunaLoveFood Fri 14-Aug-20 14:24:59

That's what I'm thinking (and what the NHS advise on their website) but it confused me when my GP said he will write to the gastroenterologist and refer me for the endoscopy test but in the meantime cut out all gluten.

Maybe the tests won't happen for a long time due to covid so he didn't want me to continue to suffer (as the blood results suggest high probability of a positive).

I don't know, I think I'll continue with eating it until I get a positive result (if I do).

OP’s posts: |
Pythonesque Fri 14-Aug-20 14:32:19

I agree that you need to eat gluten for a period of time (? 6 weeks) prior to a biopsy being done for it to be useful. (thank you to the gastroenterologist who did mine several years gluten-free without asking me to restart it because she didn't believe the changes ever went completely away - not UK btw).

However, listen to this and it may be that you will be diagnosed without biopsy:

www.coeliac.org.uk/about-us/media-centre/news/bbc-radio-4s-interview-on-new-diagnosis-guidelines/

Also, given that there could be delays, a trial gluten-free may help symptoms in the meantime.

If you get an appointment reasonbly soon, keep eating gluten, otherwise consider trying time off it and see what happens. The implications of a formal diagnosis are less than they used to be as provision of gluten-free supplies on prescription is very limited now compared to what it used to be (when less was available in supermarkets).

Many people, myself included, find all sorts of aspects of their health improve on a gluten-free diet that they had previously assumed were just normal. Hope it helps you!

LunaLoveFood Fri 14-Aug-20 15:02:43

That really helps, thank you.

My GP sounded more flustered on the phone as for some reason he had only just got this result back (as it went to the wrong Dr) whereas all of the other results came back a couple of weeks ago.

I think I will try gluten free (after test) regardless of results as I've been ill since Feb and had loads of blood tests. I did have very low b12 which was treated by injections but they couldn't figure out how or why it was so low. I've also been exhausted constantly and have been struggling with concentration, memory and tingling hands. All of this was put down to low b12, until my last set of bloods came back normal. Looking at signs of celiac it ticks most of the boxes. I've also had IBS for years, which has been controlled by removing dairy from my diet.

I'm currently suffering with stomach cramps on top of everything else and am now just wanting answers.

Before the high probability results came back my GP had said he had run out of tests he could give me and there was no reason I should still be feeling so ill and if it continued he would ask a colleague to check for early menopause.

OP’s posts: |
yikesanotherbooboo Fri 14-Aug-20 15:54:24

I think pp is right in that you only need to be eating gluten for 6 weeks before a biopsy and in these COVID times you are likely to be waiting ages for an endoscopy so going gluten free is going to be the best thing for your health. I just wanted to add that you should be 100% gluten free to get the benefits so scrutinise carefully anything you haven't made yourself!

LunaLoveFood Fri 14-Aug-20 16:27:05

I think that sounds like a sensible plan. Thank you.

I think I'll be ok eating out as a used to preparing dairy free meals and understand cross contamination risk etc. Just concerned with eating out and I'm guessing takeaways will be almost impossible.

OP’s posts: |
Dilbertian Wed 26-Aug-20 22:05:24

Join Coeliac UK and you'll have access to masses of help choosing foods. The app is incredibly useful when shopping, and eating out is certainly possible.

Pineapplemonkey Wed 26-Aug-20 22:15:04

Can I just ask, I had some blood tests this week and my GP said he was going to test for Coeliac. The results are now in but I can’t see a test that says Coeliac on it- do you know what the test is called? I had a iga test but I don’t think that’s the coeliac one........

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