Does anyone know if a negative biopsy... - Gluten Free Guerr...

Gluten Free Guerrillas

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Does anyone know if a negative biopsy result could be due to sample taken from a healthy part of intestines rather than a damaged part?

KCaine profile image
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KCaine
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Mmmm profile image
Mmmm

I think this can happen. They should take a few biopsy samples from different places though.

KCaine profile image
KCaine in reply to Mmmm

I just wondered because my specialist said that coeliac disease does not cause "patchy" damage to the intestines. He also said that weight loss would be caused by diarrhoea and because I have constipation, it could not be coeliac disease.I have lost over a stone and all my symptoms relate to cd.

Lexy profile image
Lexy in reply to KCaine

Hi KCaine, I have Dermatitis Herpetiformis and my bowel issues have always been constipation when I eat any form of gluten - I think it's quite common to get constipation with gluten issues (you literally get 'bunged up'!) so I'm surprised to hear that your GP believes you can only be sensitive if you get diarrhoea. It seems you may benefit from a second opinion? Good luck!

poing profile image
poing in reply to KCaine

Your specialist is probably wrong.

coeliac.org.uk/node/253378

Damage only shows up when the gut repair processes start to fall behind and it has to start somewhere - it cannot show up everywhere simultaneously.

DartmoorGuerrilla profile image
DartmoorGuerrilla

Weight loss could be caused by malabsorption of nutrients. Many undiagnosed coeliacs have constipation (diarrhoea isn't compulsory). I think I'd be asking the GP for a second opinion on the biopsy analysis! (get the lab slides sent to another hospital) Not least because if you're genuinely negative for CD your symptoms demand explanation and treatment. Good luck!

virgolizzy profile image
virgolizzy

Have you had a blood test done ie a TTGA? If it was positive then that'll mean it's 99% certain you have CD? Maybe you aren't too far along with it & your intestines haven't been hugely effected yet, or maybe you had given up gluten for a while before the test & you had a chance to repair?.

If it was negative & you had been eating gluten before the test, then that seems to indicate that you have not got CD.

However, if your sypmtoms improve by cutting out gluten, then maybe it's a gluten intolerance that you have, in which case your blood result would be negative & your intestine would be ok.

At the end of the day, if you feel much better off gluten & your symptons improve, then that's the most important thing. Listen to what your body is telling you.

If you don't improve by cutting out gluten, I'd go back & nag your doctor for further tests etc.

KCaine profile image
KCaine in reply to virgolizzy

thank you everyone for your replies. My tummy/bowels and bad head feel much better since giving up gluten. So, even if it is not cd, I am going to stay gluten free. Main problem at the moment is a really bad chest infection which I think I have because of losing so much weight and being run down. I am waiting to see a dietitcian and have got a referral for a second opinion.

pretender profile image
pretender

There are Endoscopy markers for CD, an endoscopy/biopsy is normally a minimum of four and can be from any part of the duodenum. My coeliac marker was Reduced folds, d2. which is the second part of the duodenum. Remember there is also a camera viewing your inside which is recorded on disc (at least mine was)