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

[eliserhj]

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 July 20, 2018 by eliserhj

[cyclinglady]

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.  

 

[tessa25]

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..."

[cyclinglady]

3 hours ago, tessa25 said:

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

Good catch.    Thanks!  

Edited July 23, 2018 by cyclinglady

[Emjean]

On 7/20/2018 at 11:27 PM, eliserhj said:

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!

Hi this isn't necessarily helpful but I need to vent too! 

I'm 17 and from the UK also and extremely anxious about most things especially hypochondria and emetaphobia .

I recently , very reluctantly had a blood test as I've been having nausea in the morning and instantly needing to poo which would get better in the day , dizziness, lower back ache ,9brain fog , insomnia, stomach cramps all the time ect...list goes on and my result came back as something like 25 I think so I have been referred for an endoscopy but I'm on a waiting list thst takes months to a year .

This doesn't help the fact I'm extremely anxious and worry about my health all the time and I have decided to go gluten free until prior to it. I've just been free for about a week now and am already starting to feel better my nausea has gone down a lot my back aches and a few other things but not all symptoms of course . 

I'm also very very anxious about an endoscopy and the waiting list doesn't help .

I was wandering is the best way about it mild sedation as I'm to afraid of general anesthetic making me feel or be sick. 

I'm so sorry for the rant !

[cristiana]

Hello Emjean and welcome to the forum

I'm a British coeliac and I can imagine the waiting times for an endoscopy must be pretty long at the moment.  

I'm afraid you will need to go back to eating gluten prior to the endoscopy.   

You could give it up for a while and then go back to it, but something to bear in mind: some people do find that if they give it up completely, they get a worse reaction when they go back to it, so you may wish to just eat less for the time being and ramp up the consumption prior to the test.

In the UK most private clinics and some NHS settings will offer mild sedation.  I tried without it once (I've had three endoscopies) but I had the sedation in the end, and would always have one now.  I feel instantly relaxed once it is given to me and for some hours after the endoscopy.  It's like waking after a lovely sleep - my gastroenterolgist refers to it as having too much to drink without the hangover, but I have to take his word for it as I have never liked the taste of alcohol so have never experienced that!

Cristiana

[trents]

I've had several endoscopies done and where I live they use a short duration sedation of some kind. It was a piece of cake. The only thing I remember about them was the inserting the scope in my mouth but there is no memory of anything else until it was over. No pain or tenderness afterward. They will ask you to not eat anything after midnight so your stomach will be empty when the scope is done. Nothing to throw up.

Edited December 14, 2021 by trents

[Emjean]

3 minutes ago, trents said:

I've had several endoscopies done and where I live they use a short duration sedation of some kind. It was a piece of cake. The only thing I remember about them was the inserting the scope in my mouth but there is no memory of anything else until it was over. No pain or tenderness afterward. They will ask you to not eat anything after midnight so your stomach will be empty when the scope is done. Nothing to throw up.

Brilliant thank you so much ! The reassurance helps alot 

Emily 

Just now, Emjean said:

Brilliant thank you so much ! The reassurance helps alot 

Emily 

Another thing I hope I only have to have just one endoscopy!

[Scott Adams]

Welcome to the forum @Emjean, it seems that your current experiment with a gluten-free diet might at least have guided you to a possible cause of your symptoms, and to get tested for celiac disease via endoscopy you'd need to eat 2 slices of wheat bread a day (or equivalent) for at least 2 weeks prior to an endoscopy, but if it turns out negative you could still have non-celiac gluten sensitivity for which there currently isn't a test. 

Normally they would do a celiac disease blood test beforehand, and for that you need to be eating gluten daily for at least 6 weeks.

[BuzzB]

HI Y'all, New here.

I am scheduled for an endoscopy, apparently the one test I have not had that the doctor said could be used to diagnose celiac disease. My question is how long and how much gluten do I need to eat before I the endoscopy, so that it can show if I have celiac d. (since if I continue on my gluten-free diet that test will not return a positive result)?

I assume that everyone is different, and that one's symptoms for celiac, or the other related gluten issues not called celiac d., can be quite varied. My issues surrounded itchiness on my skin, and then rashes. Therefore would be eating just enough gluten to experience a little symptoms be enough for the test to properly yield conclusive results. I have heard six weeks of the diet would be required, then that was changed to 4 weeks. The doctor's office did not know how much I should consume before the test.

Any feedback on how much I should consume before the endoscopy?

Thank you for any feed back

Buzz B

[trents]

Welcome to the forum, BuzzB!

Pretest gluten exposure guidelines given by the Mayo Clinic for the endoscopy/biopsy are the daily consumption of an amount of gluten equivalent to what would be found in two slices of wheat bread for at least two weeks. For the antibody blood test the same amount of gluten should be consumed for 6-8 weeks before the blood draw.

Have you had the antibody blood test performed and was it positive?

Edited December 17, 2021 by trents

[BuzzB]

2 hours ago, trents said:

Welcome to the forum, BuzzB!

Pretest gluten exposure guidelines given by the Mayo Clinic for the endoscopy/biopsy are the daily consumption of an amount of gluten equivalent to what would be found in two slices of wheat bread for at least two weeks. For the antibody blood test the same amount of gluten should be consumed for 6-8 weeks before the blood draw.

Have you had the antibody blood test performed and was it positive?

Thank you,

 It sounds like a good source of info. So there is still time for me to prepare for that one test. 

And yes, I have had the Ig--I think it was G--for Gluten--test and it was positive. Interesting it requires more time consuming gluten for that test. Thank you bringing that up.

BuzzB