Gluten Free Guerrillas

Negative blood test and positive endoscopy?

I know the chances are very slim but I'm just wondering if anyone here had their bloods come.back as negative but a positive gut biopsy?

I've been suffering with nausea, vommiting, diarrhoea, weight loss and extreme exhaustion since November.

My father has Coeliac, so Dr ordered blood test for antibodies but it came back as negative.

I had a low b12 level so have had the loading injections but still feel terrible.

Dr referring me for endoscopy but I know the changes of it being Coeliac are tiny.

I'm just wondering if anyone has had that experience?

Thanks in advance!

8 Replies
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Are you still eating a gluten containing diet?

If not that might be why it came back negative but also i believe there is a fail rate attached to negative results.

Hopefully your gastro appt will give you a more conclusive answer.

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I am still eating gluten, it's really tempting to cut it out but I know if it is Coeliac I need to.be glutened up!

Can I ask, do you react to all gluten? I mean, to everything equally? Or are there things that cause a stronger reaction than others?

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It’s quite possible to have a negative blood test and a positive biopsy.

coeliac.org.uk/coeliac-dise...

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I know someone who had a negative blood test but positive biopsy

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My blood tests came back negative I'm hoping my endocopy will come back positive 😮

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My bloods were always negative but was a definite positive from the endscopy (and apparently I'm not IGA deficient either, which would be the normal explanation).

I have had symptoms since my teens, am now 54, diagnosed 1.5 years ago. I've had coeliac tests a few times over the years and they've always been negative with one "borderline" (7, with over 10 as a positive). I basically begged for the endoscopy which revealed "subtotal villous atrophy with marked inflammation and striking increase in lymphocytes" (I happen to have the report open next to me at work :D ), ie most definitely coeliac disease.

I do feel for you - it's weird hoping to have something, but such a huge relief to have an explanation.

Good luck

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Wow - I wonder how your bloods came back as negative. It seems there's still so much unknown about the disease.

I am so hopeful of a positive biopsy ( that sounds like I want to be unwell - I really don't!).

GP really slow on the push for tests.

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Thanks for the replies everyone.

I'm really hopeful of a Coeliac diagnosis, not that I'm wishing it on myself but it could explain everything and there are is a really practical way of starting the healing process.

Just out of curiosity, was vomiting a symptom for any of you guys?

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