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Original poster

I'm not coeliac but my god gluten is the devil

37 replies

BDAC · 16/12/2018 14:39

Ever since my pregnancy I've had joint pain and rampant diarrhoea after eating gluten. I've been tested via bloods twice for coeliac and it's been negative. I've heard a false negative is rare. anyone else have this?

OP posts:
Slipperboots · 16/12/2018 14:40

Are you still eating plenty of gluten when they do the blood test?

Kezzie200 · 16/12/2018 14:42

I get aches like inflamed arthiritic joints, within hours of eating gluten. I also get loose bowels when I eat it big time (which I rarely ever so now). It is the devil!

WhenEnoughIsEnough · 16/12/2018 14:42

I'm the same have been tested for celiac but it has come back as negative. Even the doctor was shocked as he was so convinced I would be. I eat a gluten free diet now and I'm so much better all my stomach problems seem to have disappeared, I'm less tired, my joints don't hurt as much and my skin has cleared up.

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General health
CottonSock · 16/12/2018 14:45

My sister had a negative test but still very allergic. I guess it's two different things.

Original poster
BDAC · 16/12/2018 14:48

I was eating gluten when i was tested via bloods twice. Now I keep away from it. I swear pregnancy brought it on

OP posts:
Figgygal · 16/12/2018 14:51

Well you can be intolerant without full blown coeliac (which my dh is and it's a pain in the arse)

Figgygal · 16/12/2018 14:52

Posted too soon

I eat a lot less bread now due to not having it in house but when I do in any quantity boy can I tell

StealingYourWiFi · 16/12/2018 14:52

The truest test is a duodenal biopsy via a gastroscope, you can have this done whilst pregnant. Ask for a gastroenterology referral.

redsummershoes · 16/12/2018 14:55

the blood test only gives an indication. the only reliable test for coeliacs is a gut biopsy.
back to gp for referral to gastro for a colonoscopy.

ChocAuVin · 16/12/2018 15:04

My gluten intolerance got worse with a vengeance with my first pregnancy (looking back).

Never been tested for coeliac as I couldn’t dream of eating it again. Been GF for 12 years and never looked back; I’m very sensitive though as the few times I’ve accidentally been ‘glutened’ the symptoms are acute.

Kezzie200 · 16/12/2018 15:18

Same here. Just cant bring myself to eat it again enough for a test to be done. Wjat have they done to it?

TiddleTaddleTat · 16/12/2018 15:29

I've had negative bloods for coeliac but get dreadful symptoms from just a tiny bit of gluten. Had lactose intolerance for months which is a side effect of coeliac. I just tell everyone it's coeliac and act as though it is. There's a lot that's still not understood about non coeliac gluten sensitivity. It may be that the tests we currently have for coeliac are simply not sensitive enough.

Original poster
BDAC · 16/12/2018 15:29

They've tested my blood twice. They did a range of bloods I'm not anaemic but my inflammatory markers were slightly raised

OP posts:
GinandGingerBeer · 16/12/2018 15:58

My consultant told me I'd have to eat the equivalent of four slices of bread a day over a period of 3 months for the blood test. My recent test was negative but I don't eat enough of it for the test to be accurate atm.

Original poster
BDAC · 16/12/2018 16:00

I was eating gluten daily before my blood test ie 2 pieces of bread and cereal so it should have picked it up

OP posts:
TiddleTaddleTat · 16/12/2018 17:11

Same here Gin
I was eating 1-2 pieces of bread a day for 6 weeks, in agony, and got a negative.
GP said it should have been 4 slices for 3 months. No way can I do that!

StealingYourWiFi · 16/12/2018 21:57

You do not need a colonoscopy for biopsy. This won’t show celiac disease. A gastroscopy is what is needed. A biopsy from the duodenum (first part of the small bowel) gives the best diagnosis, sometimes we can visually see it too.

Original poster
BDAC · 18/12/2018 14:08

I've had a calcoprotectin test of 300 from GP today. ESR and CRP normal. The stool test was taken when I was really bad with diarrhoea so she wants it repeating after Xmas and if no better will refer to gastro. Back on gluten free now and GP said that sometimes people mistake ibs with gluten intolerance

OP posts:
christmaschristmaschristmas · 18/12/2018 14:12

@BDAC calprotectin is indicative of inflammatory bowel disease (not ibs or an intolerance) and your reading is high. Some people mistake as an intolerance. It isn't and is a serious disease which needs treatment.

I would ask your GP to refer you now.

(DD has IBD)

Original poster
BDAC · 18/12/2018 14:32

the GP said she's seen higher and when I gave her the sample I had been unwell. She didn't seem that arsed!

OP posts:
christmaschristmaschristmas · 18/12/2018 15:40

@BDAC keep an eye on it. It's not crazy high but is still 'high'.

Original poster
BDAC · 18/12/2018 15:56

I just want a scope to find out of anything is going on

OP posts:
Didthatreallyhappen2 · 18/12/2018 16:06

I hugely sympathise. I'm coeliac (diagnosed in the summer after an endoscopy and colonoscopy - now that was fun!). But I'm asymptomatic and don't feel any different now than I did when I was eating foods with gluten.

My consultant said at the time that only an endoscopy coupled with the blood tests would confirm whether or not I was coeliac. I hope that you get some answers, and quickly.

Original poster
BDAC · 18/12/2018 19:04

I just hope I don't have crohns

OP posts:
christmaschristmaschristmas · 18/12/2018 19:39

DD has crohns. It is much better treated though, so it doesn't lead to complications in later life. @BDAC