What to expect from an endoscopy

Lately I've been getting a lot of questions from people who are about to have an endoscopy to determine whether they have coeliac disease.


Wondering about a coeliac endoscopy
What does an endoscopy for coeliac disease involve?
I must admit, it's not the most pleasant procedure.

However! There are 2 things that make it a lot better than many visits I've had to hospital.


Firstly, it's over really quickly. Mine took about two minutes (no, really).


Secondly, you don't need a general anaesthetic. As someone who's had three of these, it's a relief not to have to go through another.


The reason it's not so great will become clear shortly.

I'll explain what happens...


An endoscopy for coeliac disease basically involves having a camera that goes down your throat so a gastroenterologist can look at your small intestine and take a sample for biopsy.


Whilst doing this, the endoscope may gently blow air so it's easier for the specialist to see what they're doing.


The analysis of the sample taken will determine whether you have coeliac disease.


That said, if there's visible damage to your villi in your intestine, the specialist may be fairly confident prior to the biopsy analysis that you have coeliac disease.


Before any of this happens, you'll be given two options: a throat spray and/or sedation.


I opted for a throat spray (which numbs your throat and tastes - according to the specialist I had - like alcoholic bananas).


I've met many people who much preferred sedation. (And you can still have your alcoholic bananas if you wish.)


My reasoning at the time was that I didn't want to have the rest of my day affected by being sedated. You're not allowed to do much afterwards and will need to rest. If you have small children to look after, you may decide it's better to go for the throat spray.


The endoscopy doesn't hurt, either, so you're not having to brace yourself for pain.


That said, I absolutely loathed it. I found the way I was treated really humiliating. There was a tool to suck the saliva away from my mouth as it dribbled messily onto the bed. Having a tube inserted down my throat felt invasive, and after it was all over, I burst into tears, which everyone found strange.


I mean, come on! When you're an undiagnosed coeliac you're liable to suffer from some pretty awful symptoms, including vomiting, diarrhoea, bloating and depression. I was definitely suffering from the latter, and the attitude of the staff made things immeasurably worse, especially as they offered me a (gluten) biscuit as I sobbed.


But let's not dwell on that. I know plenty of people who had much better experiences.


Once you've had the procedure, you'll probably be told you can stop eating gluten. There are cases where this might be unadvisable (such as when a repeat endoscopy is needed) but if you're having severe symptoms from eating gluten, your specialist may advise you to stop putting yourself through any more trauma.


The results take a few weeks to come back (although this may differ depending on where you live and issues with covid).


Once you have a confirmed diagnosis of coeliac disease, you'll be referred to see a dietician (if your doctor doesn't do this, make sure you ask). You should also have more tests done to check things like your vitamin D levels.


If the test comes back negative, it doesn't mean you don't have coeliac disease. It may mean they need to do a further test - e.g. if you haven't eaten gluten for long enough then you'll get a false negative (the gluten challenge means eating at least 2 portions of gluten every day for 6 weeks).


Whatever your diagnosis, please don't panic. There are many places you can turn to for advice. Pop me a message via the form here if you've got a particular concern.

Hi! Great to have you here...

My name's Ali and I help people with coeliac disease have a better, easier and healthier lifestyle. 

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Ali Walsh