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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Endoscopy
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20 posts in this topic

I have heard from a lot of people that the next step after a blood test is an endoscopy. Have any of you had one and was it bad? Im not even sure what it is really but I have an idea?

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I didn't have the blood test, but I did have an endoscopy:

It was totally painless. Seriously. The worst part was when they gave me this cough medicine-like stuff that numbed my throat. That was the worst part for me. After prepping you (IVs for fluid, ect), they give you that numbing stuff. After that, it's into the room where they'll do the test. They gave me a sedative and when I woke up, it was all over and my throat was back to normal. I didn't even get a sore throat afterwards.

I don't know how all GI docs do it, but that's how mine did it. My test was normal, as was my stomach. It's a totally painless procedure and I was asleep for the whole test :).

-Kel

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my experience was the same as aight ball-

painless, nasty throat number, no big deal.

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Hello! I have a question (or 2). I had a blood test that was positive for celiac but haven't gotten any better after being on gluten free diet for 8 weeks. I've also been avoiding alcohol, soy and dairy. It's been a very basic diet. Now my GI doc wants to do a biopsy (endoscopy) to be sure it's celiac disease. The problem is - if it's negative, is that meaningful? If I'm not eating gluten, won't it be negative? If it is negative, he's probably going to give me steroids. What should I do??

Thanks for your help.

warpspeed

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warpspeed, I would guess that after 8 weeks, it could definatley affect the results. My doc wanted me back on gluten for 4 weeks at a minimum and that was only after a 2 weeks gluten-free period. I think it would tamper the results.

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I'd go as far as to say I wouldn't waste my time with an endoscopy if I had been gluten free for 8 weeks. You need to be eating gluten to show accurate results.

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Right, you need to be ingesting gluten. I'm surprised your doctor didn't also suggest a colonoscopy if your problems are bad enough to suggest steroids. I would talk to the doctor about what you've heard from this site, and ask him if it's possible that you wait a few weeks and go back to gluten. Of course, that's a determination that only you and the dr. can make and decide if waiting is safe.

As far as what's involved in the endoscopy, mine went fine even though I was so nervous about it! It was done in the hospital, the only prep was to avoid food and drink for 12 hours before the test. When I arrived they put an IV in and started some fluids going. Then they wheeled me in and gave me a mild sedative, no throat spray. I was awake enough to answer questions (though sleepily!) and to open and close my eyes many times while the tube was down my throat. Of course I was also able to swallow and breathe normally. When I swallowed, I was aware of the thin little spaghetti sized tube in there, but it did not hurt or bother me at all. Then they rolled me over and told me we were done. It was a total of about 7 minutes for the actual procedure. No big deal at all, and I think it's an intregal part of diagnosis.

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Hi,

I am waiting for my biospy/endoscopy at the mo and as i live in the uk i was wondering if anyone knows if the procedure is different over here. my doctor hasnt really explained it thoroughly yet, but i got the impression that i will be awake throughout the process - with perhaps a local anesthetic, but not a general one.

i really dont like the sound of it at all - can anyone in the uk put my mind at rest?

cheers

nickra :huh:

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My endoscopy was also a piece of cake. They do not give a general anesthetic usually. What it is, is a mild sedative. I think most people are somewhat awake and vaguely aware during the procedure, but they rarely remember it. I did not remember a thing. I don't even remember the doctor coming into the recovery room afterwards and talking to me! I guess I feel like I didn't even have it done!

I do understand your aprehension, I felt the same way. However, now that I have been through it and know what it's like, I wouldn't hesitate to have it done again.

As for being gluten free prior to the test, see my response to the topic of gluten-free for 2 months and going for biopsy in this section.

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hi

thanks for everyones help on these pages

my biopsy is tomorrow and im so nervous - ive read different accounts on here, some people saying it was not nice, but most saying it was painless and no problem

i hope mine is the latter!!!

well, i guess theres only one way to find out, i just want to get it over and done with.

cheers everyone

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An endoscopy is when they stick a thin tube down your throat and cut 5-6 microscopic pieces of your intestine off, so that they can test them. They take the test in multiple spots because the flattening of the villi can be patcy. There is a camera on the tube, as well, so that while they're in there, they can see (on a screen in the procedure room) the inside of your small intestine. I was kind of concerned going into it cause I had never had anything done to me where I had to be knocked out....it's painless. They knocked me out and although they say you can have a sore throat after, I didn't have one, at all. As a matter of fact, I woke up soon after and felt well enough to leave the hospital, but first they wanted to make sure that my gag reflex was working and that I would't throw up water or apple juice....no big deal, so don't worry about it too much. In addition, don't read up on it the morning it happens...I did that....all it does is make you think it's worse than it really is...you'll be fine.

-celiac3270

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I was really freaked out before mine and when I went in I told the doctor how nervous I was. He gave me extra sedative and after that I could not care what happened. It really was very painless and easy for me. I did go home and nap for about 6 hours though!

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hi

i had my endoscopy/biopsy this morning.

its obvious that each person can find it quite different to another.

i was sedated but i remembered every bit of what happened and i did not sleep at all afterwards. i can feel where they took the biopsies from - which is kind of wierd

as today has gone on - i am forgetting more and more about the procedure - it is very hard for me to explain

i can remember not liking it and being convinced that i had not been sedated at all - but it is now apparent that i was as i am losing my memory of it.

i was very nervous and came on here yesterday to try and console myself - celiac3270, you are so right - it only makes you worry more. if anyone is on here looking for info about the endoscopy and how they will feel - i would like to reassure you. please dont worry - the 10 mins or so you will be in theatre is a very tiny amount of time out of your life. most people find it painfree - but some dont (ie ME) but even if thats the case its not the end of the world and compared to pain i have been suffering for the last few years - its really not that bad.

i wont pretend mine was painless and worry free - it most deffinatly wasnt - but the relief i felt afterwards was well worth it - now its done and i can get on with trying to get healthy. the procedure is over very quickly and with hindsight im actually quite pleased i wasnt fully sedated - because i know what they did to me instead of being in the dark.

all the best to anyone awaiting their biopsies - you'll be fine :)

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i was sedated but i remembered every bit of what happened and i did not sleep at all afterwards. i can feel where they took the biopsies from - which is kind of wierd

I got put out completely...I could do whichever I wanted, but it's easier, I think, to be put out entirely....I just remember the guy sticking the needle in me to knock me out and then I remember being wheeled to some place where I'd lie until I wake up -- only I was awake as they wheeld me there....well, that's typical celiac3270; getting up early :P ....anyway...I don't know what happened and was out of it the whole time; much easier. You shouldn't be able to feel where they took it -- it's a microscopic piece of your intestine so it shouldn't hurt -- you should just be able to feel, if anything, a sore throat from where they stuck the tube down your throat. Do you think it's just in your head?

i was very nervous and came on here yesterday to try and console myself - celiac3270, you are so right - it only makes you worry more

I know from experience....I posted when I was diagnosed via bloodwork...but not about the scope. The morning of the scope I looked up endocopy, scope, and other keywords that got me to some health articles with the grisly details :) ...which got me more nervous since, like I said, I had never had anything done where I was knocked out....I mean, I had broken my head open two or three times, but that was it :) ....stitiches are really different from scopes...so I was unsure...anyway....

i wont pretend mine was painless and worry free - it most deffinatly wasnt - but the relief i felt afterwards was well worth it - now its done and i can get on with trying to get healthy. the procedure is over very quickly and with hindsight im actually quite pleased i wasnt fully sedated - because i know what they did to me instead of being in the dark.

Mine was painless, though not worry free, either. The nice thing is that once it's over, you know for sure that you had it -- you won't go through life saying "did i really have it?" or "I wonder if all this effort is unnecessary".....that's the nice thing. I guess choosing whether or not you want to be completely out of it is a personal thing....I am glad that I was completely out, cause I would've been more scared to know what's going on...like you said in the beginning of your post...everyone is different.

all the best to anyone awaiting their biopsies - you'll be fine  :)

Ditto...it's not that big a deal...although it seems like one until it's over.

Congratulations, Nickra.... :) ...see, it was fine! :)

-celiac3270

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You shouldn't be able to feel where they took it -- it's a microscopic piece of your intestine so it shouldn't hurt -- you should just be able to feel, if anything, a sore throat from where they stuck the tube down your throat.  Do you think it's just in your head?

hmmm, i can see why you might think its in my head - as you were put out completely i think we obviously had very different experiences. i wasnt given a choice about it - but they did tell me that some people need more sedation than others. however i know for sure it is not in my head.

OK - please accept my excuses to anyone who is a wee bit squeemish, i will try not to be too indepth but, i can remember lying there - gagging on the tube and hearing the consultant saying "open" and "close" apparently this is where they open and close the tube where the knife is that takes the biopsy.

when i said i can feel where they took the samples - i dont mean specific spots where i think each bit was taken - i mean i can tell my insides have been jiggled with. i can still feel it now - its not painful, but has been quite uncomfortable for most of the day (didnt stop me going shopping and ordering pizza though - so cant be that bad - lol)

also - i should have mentioned before - i had my biopsy to conform that i dont have ceoliac, not that i do. my consultant found some areas higher up (where the stomach joins the bowel i think) he took some extra samples from here because he found some bleeding or something - so that may also explain a difference in our experiences.

it has been a wierd day - my memory this morning was complete - i was able to remember every last detail - and the nurse was surprised that i was able to recount everything to her about what had happened. but my memory has faded throughout the day - there are now big blank bits. i cant help wondering if in a couple of days i will have forgotton everything!!!!

Congratulations, Nickra.... :) ...see, it was fine!  :)
i hope we can help put a few minds at rest - like you say - once youve had it - it really is ok :)
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I had mine about a year ago and was mildly sedated. Whatever they used, I felt that I had not a care in the world... that part of it was great. Apparently they need you awake to participate in the procedure, so they don't put you totally out. I remember about a second worth of it, like a rubbing my throat sensation.. very strange. Anway, the side effect of the med is amnesia. Hahaaha! I do wonder now and then what kind of patient I was... did I gad?... did I drool?... only the doc will know. It sounds like your side effect took a day or so to kick in.

Gretchen

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did you sleep much after it?

the nurse told me to lay down and that i would fall asleep soon

10 minutes later i was sat up watching tellky because i was bored and another 20 mins later i rang for the nurse and asked if i could go home

maybe i am a freak patient

I do wonder now and then what kind of patient I was... did I gad?... did I drool?.

ps - i drooled, gagged, spat, wriggled and basically totally freaked out - i dread to think what happened on the bits i cant remember...

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did you sleep much after it?

the nurse told me to lay down and that i would fall asleep soon

10 minutes later i was sat up watching tellky because i was bored and another 20 mins later i rang for the nurse and asked if i could go home

maybe i am a freak patient

ps - i drooled, gagged, spat, wriggled and basically totally freaked out - i dread to think what happened on the bits i cant remember...

Actually, when my friend picked me up to go home, I was a little tired. But then we went shopping and I didn't feel badly at all... well, that I can remember! I do think it's better that I have very little memories of the procedure... if not for a pain issue, it's for the sake of pride. My endo was normal, by the way.

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glad your result was normal - i see my consultant again in august so time to get on with stuff until i get results

cheers

nickra

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Hahaaha! I do wonder now and then what kind of patient I was... did I gad?... did I drool?... only the doc will know. It sounds like your side effect took a day or so to kick in.

I think they said that they'd give me something to stop my gag reflex.....but I know that I drooled -- the hospital pillow was all wet from my saliva after -- :P -- yuck.

-celiac3270

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