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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:
BDAC · 18/12/2018 19:47

what were her symptoms Christmas?

OP posts:
BDAC · 18/12/2018 20:43

i actually do think I've got ibd. I'm just not right and haven't been for a year

OP posts:
christmaschristmaschristmas · 18/12/2018 22:08

For a couple of years she has had stomach complaints, what we thought were 'intolerances and sensitivities'. Then she started bleeding and became more generally unwell with it.

Feeling generally not 'right' and having generally unwellness is a big symptom.

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BDAC · 18/12/2018 22:08
Xmas Confused
OP posts:
BDAC · 18/12/2018 22:10

looks like I'll be getting a nasty diagnosis in 2019

OP posts:
christmaschristmaschristmas · 18/12/2018 22:19

It can be really well managed once diagnosed. Good luck

OComeAllYeFaithful · 18/12/2018 22:39

I’ve had symptoms for 15 years now - bloating, reflux, variable bowel movements. Blood tests were normal but my GP agreed to refer me for a gastroscopy and later I had a coloscopy to investigate chronic abdo pain. Biopsies for Coeliac and colonoscopy were negative/normal. They diagnosed me with ‘functional dyspepsia’ and I have a hiatus hernia.

However I did push for a laparoscopy (chronic abdo pain with no obvious cause from scans was so awful it stopped me working) and I did get diagnosed with endometriosis. I definitely have worse symptoms around AF. So I have an IBS and endo diagnosis.

I know I’m sensitive to gluten - I did the low FODMAP diet where you exclude all foods likely to cause IBS under the guidance of a dietitian and then reintroduce them one at a time to see what is setting you off - but unfortunately I reacted to everything I introduced! Life was so bland without all of them. So I’m GF, try to keep my lactose intake to a minimum and it helps. I also get the aching joints, feeling rough, bloating, nausea and even vomiting at times from gluten intake but I’m not coeliac nor do I have IBD. As one consultant siad to me once ‘You’re all auto-immnuey, aren’t you?’ Smile I also have asthma, eczema and migraines!

I think in your position I would push for a gastroscopy, you need it to be investigated. It may not be as worrying, as you suspect, but even the negative blood tests haven’t put your mind at ease. I think a biopsy and a good look down probably would.

BDAC · 18/12/2018 22:47

the calcoprotectin has increased from 77 to 300 in 4 months

OP posts:
christmaschristmaschristmas · 19/12/2018 18:45

@BDAC go back to your GP after Christmas and get a referral to a gastro consultant.

EnidButton · 19/12/2018 19:53

Your gp sounds a bit shit and that'll naturally make you start trying to diagnose yourself so I wouldn't worry about bad diagnosis yet. Try to see another one maybe and push for a consultant app. Flowers It's rubbish when they don't take you seriously.

Onceihadaname · 20/12/2018 12:40

My blood test came back negative but i was put on a GF diet which turned my health around incredibly. The idea of going back on gluten is too horrible a thought as I react even when I don't realise the food I have eaten isn't GF, so intolerant / coeliac is totally irrelevant - I know I need to be gf forever as I will suffer regardless of the medical label.
Thankfully GF food is more readily available now. YADNU to think gluten is the work of the devil!
I had heard the opposite though and that false negatives on bloods was quite common. Anecdotally, i have come across so many people in similar situations who can't face a retest so i wonder how reliable the blood tests are given that people are so reluctant to press for additional testing (so the results aren't challenged)

longwayoff · 20/12/2018 12:58

Can't resist an occasional piece of toast in moments of weakness and am sitting here with stomach cramps to pay for it. Am not coeliac but is definitely the food of the devil.

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