DD's blood test positive for coeliac - being referred for colonoscopy

[NicoAndTheNiners]

She's 17yo and has been unwell for sometime. Weight loss, anemia, stomach pains, diahorrhea.

Had blood tests two weeks ago which we were told were ok apart from very low ferritin. DD back at the doctors today to get results for her stool sample which were normal but apparently he's rechecked the blood test results and decided that now it's positive for coeliac!!!

So he's referred her for further testing which he says will be a camera up the bum. Though the coeliac uk website suggests its a camera down the mouth. I'm not sure I have much confidence in what the GP says now. I always thought that you needed to carry on eating gluten up to any biopsy testing. GP said he's not sure and is going to do some reading and ring us up and tell us whether dd is to stop eating gluten now or not. He's unsure of how long the referral will take.

Anyone here being for the biopsy test and was camera up the bum or down your mouth? Did you have sedation or not? DD is a bit needle phobic and says she won't have sedation if it involves a needle.

Have a look on the Coeliac Society website, but everyone I know who has had this done has had endoscopy (camera down the mouth).

Thanks, I'm waiting for a call back from Coeliac UK, they said it might be next week before they can ring back.

Need to be eating gluten for 6 weeks before testing I think

My understanding is the camera is down the mouth and it is important to keep eating gluten before testing. The tests may well be more tolerable if she is able to cope with sedation.

It’s usually an endoscopy to diagnose for Coeliac disease (camera down throat to see the gut). It’s very quick. They take biopsies to examine under a microscope to visualize the Coeliac damage and confirm the blood test. Gluten must be eaten until all the tests are finished.

Coeliac U.K. website has loads of info on it about the diagnosis and then what to eat etc. Well worth joining then. They also have a support group for under 25s.

Definitely was endoscopy when my ds had his done and you need to be eating gluten.

I have a friend who’s children have recently been diagnosed and they now don’t seem to use the endoscopy at all if the blood markers are high enough, so it might be worth asking coeliac society about that. Meant a much shorter time between the initial, blood based diagnosis and being able to stop gluten.

Thanks everyone. Coeliac uk rang back - it's definitely an endoscopy. They recommend trying to get the biopsy done so will wait for that and see what happens.