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Do I really need another endoscopy?

(6 Posts)
Maidofdishonour Fri 13-Nov-15 21:42:04

I was diagnosed with Coeliac disease just over a year ago through blood test and endoscopy. In our area we are told to go gluten free but to include gf oats and then, a year later we have blood tests, a dexa scan and a second endoscopy to check that the gut has repaired.
I am really strict about sticking to a gf diet including having my own toaster, food cupboard and prep area. I have had my dexa scan and my bone density is above average for a woman of my age (48). My blood tests are all brilliant and the consultant says I am doing everything right. I feel fine.
BUT he says that I still have to have the repeat endoscopy because 'that is the policy'. I found the procedure extremely stressful and I just can't cope with having it done again.

Can anyone advise me whether this is standard policy for everyone? Has anyone not had a second endoscopy and regretted it?

Schrodingersmum Sat 14-Nov-15 13:01:53

Just decline, they cannot force you to have an endoscopy its not a problem

Hotbot Sat 14-Nov-15 13:19:13

Why not request a colonic c.t. Much more tolerable and the results are comparable

Maidofdishonour Sun 15-Nov-15 00:31:47

I didn't realist that was an option hotbot (apt username for this)

The biopsies are taken from the small intestine just beyond the stomach. Can you get that far by going up the other way?

Hotbot Sun 15-Nov-15 06:00:34

You can't take biopsy samples with colonic ct but you do get an overview of your Olson. I sam not a dr so it may not be appropriate for you. You could ask and see what he/ she says
www.radiologyinfo.org/en/info.cfm?pg=ct_colo

BeenAndGone Sun 15-Nov-15 20:08:26

I didn't have a second endo after diagnosis due to pregnancy then breastfeeding. I was completely fine for 4 years and symptom free then began having problems. Apparently there's a small percentage of Coeliacs that initially look as though they are responding but then symptoms reoccur and an endo can reveal ongoing issues. This can be either due to still ingesting small levels of gluten or refectory coeliac disease.

ink{https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/refractory-coeliac-disease/\www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/refractory-coeliac-disease]]/}

I know it's a horrible procedure and I hated it but would have a second if they are offering. Just ask to be properly sedated and it should be better experience hopefully.

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