This may be a stupid question! - Gluten Free Guerr...

Gluten Free Guerrillas

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This may be a stupid question!

scousekitty profile image
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Hi I had an appointment with a consultant on Friday and my endoscopy has been booked in for 2 weeks - I also have to have a camera put the other end too (shudder). My consultant didn't really give me any information during the appointment, he also didn't have much of a sense of humour and it was a bit like a formal interview.

Apart from the general worries - I am a control freak and the thought of having cameras inserted is greatly disturbing! - I have seen mentioned on here a few times about having to go back on the gluten before my endoscopy. Is this correct?

Also can anyone offer me any words of comfort so I hopefully don't get too nervous.

Thanks everyone.

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scousekitty
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14 Replies
NorthernSoul profile image
NorthernSoul

Yep, you'll have to go back on gluten for your endoscopy if it's the first time you're having one or they won't be able to diagnose you.

As for the procedure itself, it's really nothing to worry about. I've observed quite a few of them (I'm a medical student) and I've had a gastroscopy myself. It feels a little odd and I gagged a little when they pulled the camera out but that was really the most unpleasant thing about it. If you're nervous then ask for sedation in addition to the numbing throat spray and you'll definitely be fine! It's a very common procedure and extremely safe. And at least your doctor won't be talking through the anatomy and explaining the findings on the screen as he's doing it as he did with me! Every doctor I see feels the need to turn a consultation into a teaching session...

If you have any questions, then ring up the hospital and ask. If you don't already have them, here are a couple of leaflets about upper and lower endoscopies:

royalfree.nhs.uk/pip_admin/...

chelwest.nhs.uk/your-visit/...

I've never had a colonscopy but there's plenty of people on here who have who will be able to give you a first hand account of what it's like.

weee profile image
weee

Yes, as Northern soul says, if this is your first endoscopy t o confirm the diagnosis then you have to have been eating gluten. The doctor wants to observe flattened villi. These are the finger like projections that line your intestine and allow for absorption of nutrients from food and, for someone with coeliacs, gluten causes them to become flattened which is why we are unable to absorb nutrients from our food.

I have had both upper and lower scopes and didn't ask for sedation for either. I got a throat spray for the upper, it was very uncomfortable and the gagging was awful, but it was over quickly and not too bad. I'd defiantly opt for sedation for a lower if I were ever to have one again though as this was more painful .. and it did seem to go on for longer..

All the best ..

Ellen

Irene profile image
IreneAdministrator

Hi there. A similar Q was asked recently and received some useful responses. Have a look here and see whether this helps.

glutenfreeguerrillas.health...

I don't like being prodded and poked about, so having things shoved into my body makes me nervous so I had sedation for an endoscopy and a colonoscopy on the same day, so I woke up to find it all over. I have had follow up endoscopies all with sedation so just tell them you're nervous. Sedation is only a stronger dose of the local anaesthetic anyway.

And good luck.

NorthernSoul profile image
NorthernSoul in reply to

Sedation is usually with midazolam which is not a local anaesthetic (these can do very bad things if given IV). It's a benzodiazepine and of the same class of drugs that are given short-term in psychiatry. For clarification for scousekitty- although people often feel as if they've drifted off during the procedure (and are unable to remember what happened), you will actually remain conscious. It's nothing like a general anaesthetic.

As for going back on gluten... It really sucks, I know. But stick it out as best you can. I found that if I ate a slice of toast before going to bed, I got the worst of the nausea over and done with during the night (as I rarely woke up due to it), which was what I personally found most horrible.

Good luck!

in reply to NorthernSoul

I had that sedation with thikit was Fentylin ( not sure spelling) never again. failed colonoscopy, sedation and pain relief. First one about 12yrs ago at another hospital went really well not sure what sedation etc., Couldnt believe how same proceedure could have been so different. Staff ok at both proceedures just effects different.

scousekitty profile image
scousekitty

Thank you for all of your responses, the doctor did say I would have sedation which I think is good. You would have thought he would have mentioned the fact that I have to eat gluten first as this is quite important. Last time I tried before my blood tests I lasted 4 days and was in agony and my gp warned me to stop. So terrific!

Thanks again for the advice and the links, I'll have a good read.

Hi, you need to be eating gluten for at least 6 weeks prior to having an endoscopy otherwise the tests will give a false negative and they won't see any damage. The trouble with having stopped eating gluten is that to be diagnosed you need to eat it and after having a break from eating it then the symptoms are usually worse than they were to start with. Doctors do need to start becoming aware of this because people are being put through more pain than is really necessary.

Another point, sedation for both cameras is definitely the way forward.

Good luck x

The pain relief and sedation for a colonoscopy didnt work nor did the colonoscopy which failed. I was aware of pain and comments during proceedure. Years ago at another hospital never had any discomfort during or after, never felt a thing 1st time. Maybe different medication.

I had to have "cameras both ends too!" and i tried with sedation but it didnt help at all, so i went back and had a GA it was perfect, woke up it was all done and i didnt know a thing about it :)

x

Mikes profile image
Mikes

Hi Scousekitty - I have just returned home from havzing endoscopy this afternoon. I had sedation just to make sure it wasn't too bad, and I do not remember anything about the proceedure at all. Really nice staff, had a spray iin the throat, not very nice tasting, a bit like bananas. I watched the juiced go in and then my son was nudging me awake - really brilliant didn't know a thing. Oh just one thing, don't do what I did and just wander off chatting, only to get a phone call half way home saying that I had been signed off......oh well there you go, in and out in under an hour, can't be bad.

in reply to Mikes

Hi, pleased all went well during proceedure. Thought you had to wait for staff to give go ahead to go home after sedation. It was weeks and months latter when I was informed about flattened etc., villi. I was awake during proceedure but was ok, staff ok. Staff ok at colonoscopy but wasnt successful for some reason. Strange telling you about being signed off on way home. Had to laugh at you wondering off, next time in hospital make sure ok to go. Take care.I fooloshly replied to scouskitty and had to delete. Again take care.

scousekitty profile image
scousekitty

Thanks everyone for your reassuring words, I am still trying to get in contact with the hospital to find out about the gluten issue. I'm quite cross that the consultant didn't mention it, but I have to wait for my letter to arrive which will give me the info and the number to call - apparently I can't do anything till this comes.

scousekitty profile image
scousekitty

I have good news, I finally was able to speak to my consultant's secretary and I do not have to eat any gluten before my endoscopy next Friday - yipeee!

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