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eliserhj

Am I doing the right thing? Going gluten free before endoscopy

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Posted (edited)

Hi all!

A few months ago I went to my local practice with complaints of paleness, fatigue, and difficulty performing the mildest of exercise. I told my doctor I thought I was anaemic, since iron deficiency is an issue in my family. Incredibly fast testing (the day after the test I was called back in) revealed I was severely iron and vitamin B12 deficient, and I went on iron supplements and B12 injections immediately.

There was no obvious cause for my sudden decline in health, as my diet has remained largely unchanged for years. They suggested that Coeliac disease could be the cause, which would explain the slowly worsening absorption issues, and the fact that my mother has it made it all the more likely. I had two blood tests done - one came back positive and one came back negative. They didn't reveal to me the exact tests and numbers, which I suspect is because of how young I am (17).

I've been on the waiting list for an endoscopy for a month now. During this wait I've grown more and more restless - I just want to be well again. A discussion with my mother recently led me to think that going gluten free early could be a good idea. Instead of having to wait indefinitely - being in the UK, NHS waiting times can be astronomical sometimes - and progressively get worse and worse, I'd be able to gauge whether or not going gluten free makes me feel better. After all, if I am diagnosed after an endoscopy, it would just be the same outcome. Apart from some extra peace of mind, there is no real benefit to having a doctor tell me I have the disease. A small voice is telling me my reasoning would somehow be more legitimate with a diagnosis, but all that matters is how I feel (or at least, that's what I'm telling myself).

So, I started a gluten free diet on the 18th. I'm sort of winging things right now, since all of this was so sudden. I'm a bit nervous to return to the doctors in August, as I need to discuss what's going to happen with my supplements - I'm unsure how the dosages are going to change as my levels are replenished, and if other blood tests will be needed to check on my progress. I think I'm inevitably going to feel a bit awkward once I walk in there and say, "Hey there, incredibly qualified person who knows what they're doing more than I ever could, I've decided to disregard your well-informed medical opinion but I still need you to dose me up with drugs". I just hope they understand. Hooray for being an overthinker!

I think I just needed a place to vent, since I suspect my mother's a little biased - she's seeing me ill and is as such very encouraging of me going gluten free early. Not a bad thing, of course. I was just wondering if all you other Coeliacs think this is a good course of action. I just figured since I have terrible genetics and blood tests on my side (this is why I wish I knew the specifics about the test, so that my decision is more solid!), it can't be too ridiculous, right?

Thank you all in advance and have a good day!

Edited by eliserhj

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I can understand your frustration.  You can keep your endoscopy appointment (call in to see if any has canceled).    You would need to go back on gluten free a full two weeks prior to the scope.  It might be worth it, but only you can decide what is worth it.  My hubby went gluten-free 17 years ago without a proper diagnosis.  It was worth it.  His health improved.  But he would be the first to tell you that I have had way more support from family, medical and friends with my solid diagnosis.    Just something to think about.  

 

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1 hour ago, cyclinglady said:

You would need to go back on gluten free a full two weeks prior to the scope

She meant "go back on gluten a full..."

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Posted (edited)
3 hours ago, tessa25 said:

She meant "go back on gluten a full..."

Good catch.    Thanks!  

Edited by cyclinglady

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