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Biopsy, What Should I Know?

Guest AutumnE

By Guest AutumnE
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest AutumnE
Guest AutumnE
Posted

If enterolab comes back positive my gi dr is wanting to do a biopsy. I'm assuming I will be put out for it. How long did the whole thing take at the hospital? Are there any preparations? He said a scope of the small and large intestine so is that a scope in the mouth and butt? What should I expect afterwards?

Thanks for any advice :)

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Lisa Mentor
Lisa
Posted

The endoscopy exam is the easiest test I have every had. The worst part is being nervous about it. It is through your mouth into you small intestines. They clip some part of your intestings, and they should take 5-8 samples to test. Please request that.

They give you a shot, you fall asleep, wake up and most people have no memory of the testing. I had a sore throat after, but that was it.

But, please bring someone with you. I talked a bit of nonsense when I woke up and remember nothing about what the doctor said. I had to ask my husband several times, the next day, what the doctor told me.

They send off the biopsy, and the results will come back within a weeks time. But, the dr. will be able to tell you what he/she sees.

The prep, is to not eat in, I think 12-24 hrs., but I can't remember.

The Colinoscopy, is another story.

I hope that I have put you at ease. :)

Guest AutumnE
Guest AutumnE
Posted

You have thanks :) I hope I just heard him wrong about the colonoscopy!

It does sound easy but Im still nervous. Im not keen on hospitals.

Lisa Mentor
Lisa
Posted

When is your appt.?

VydorScope Proficient
VydorScope
Posted

I have had 2 endoscopy's and 1 colonoscopy. Both are realy a non event, but the prep for the colonoscopy is NOT AT ALL FUNNY! NOT EVEN CLOSE!

The biggest and best advice for it was already posted, BRING SOME ONE YOU TRUST WTIH YOU. Make sure they know all they questioons you want asked, and make sure you trust them 100% cause it si extremly likly you will remember absolutly NOTHING the doc tells you, and you never know what YOU might say while doped up. :ph34r:

Guest AutumnE
Guest AutumnE
Posted

I dont have an appt yet, Im still waiting on enterolab. Im suppose to call when I get the results back.

I'll bring my husband hopefully he will ask the right questions. Ugh it sounds similar to glutening with the prep for the colonoscopy.

Amethyst Newbie
Amethyst
Posted
I dont have an appt yet, Im still waiting on enterolab. Im suppose to call when I get the results back.

I'll bring my husband hopefully he will ask the right questions. Ugh it sounds similar to glutening with the prep for the colonoscopy.

Hi,

I had a scope and 8 x biopsy done yesterday and I lived to tell the tale!! I am reading through the forum taking it all in!.

I notice in your siggy that you say you are gluten free?

gluten free diet for both of us.
Don't forget that you will have to go back on gluten for at least a full six weeks to get any positive results. I had to and can now go back to being gluten free Phew!!

Good luck xxxx

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Guest AutumnE
Guest AutumnE
Posted

Hi Amethyst :) Welcome to the board

Im not really wanting to go through this. Im satisfied with the gene tests but my gi dr is pushing it. Maybe its a good thing. I havent had a scope for 22 years with loads of gastro problems I feel like I should do it to get a clean bill of health in a way.

I wonder if I will still show damage, I havent had diarrhea and sciatica together since the end of may and low and behold its back with a load of intolerances other than gluten. I have a feeling it may show damage just do to the intolerances other than gluten.

Im not going to do a gluten tolerance period of eating it. I cant handle the symptoms anymore, they are worse than was months ago.

VydorScope Proficient
VydorScope
Posted

IMO, (and many many others) Bisopy for celiac disease is a total waste of time and money. The fact that your already gluten-free just makes it more so. You do NOT have to have the test just cause your doc is pushing it.

You did the diet, you got better, you have the Entrolab test... why go through with it? If they are ONLY looking for celiac disease its a waste, if they are looking for other things (colon cancer, polyups, etc) and will check celiac disease while there that makes sense.... just know that the result is only usefull if its is postive. A non- postive result tells you absolutly nothing at all. Bisopy can only confirm the celiac disease dx, and can never rule it out.

Guest AutumnE
Guest AutumnE
Posted

Thanks :)

I know your right. I guess Im in a way I am second guessing myself when I know down deep I have this without a doubt.I almost feel the need to have the proof even though it may not give me any. Im scared of procedures anyways honestly. I have always been a chicken on anything that requires anesthetic for me. The only reason I went to the gi is because my general md really pushed it.

Guest nini
Guest nini
Posted
Thanks :)

I know your right. I guess Im in a way I am second guessing myself when I know down deep I have this without a doubt.I almost feel the need to have the proof even though it may not give me any. Im scared of procedures anyways honestly. I have always been a chicken on anything that requires anesthetic for me. The only reason I went to the gi is because my general md really pushed it.

If I were the betting sort I would bet that the biopsy is going to tell you absolutely NOTHING. You have your answer. Tell the GI dr. you refuse to do the biopsy. No reason to put more money in his pocket for a procedure that is going to tell you nothing you already don't know. If your already gluten-free then the results will be skewed. It's hard enough to get a positive dx with a biopsy even when people are still on gluten. I've heard so many stories of people having multiple endoscopes over periods of YEARS, (all negative) Dr's refusing to accept it might still be Celiac and the person continuing to get sicker and sicker to the point of disability and in some cases even death before Celiac is positively confirmed. The biopsy and endoscope are quickly being replaced as the gold standard by POSITIVE DIETARY RESPONSE. That is the most valid diagnostic tool there is.

Dr.s are not infallible, they do not know everything, and of course they are going to push for what they've always done, but the old way is not the best way. Enterolab is way more reliable at detecting gluten intolerance than a stupid biopsy.

Terch Apprentice
Terch
Posted

Hi,

I had the endoscopy 3 weeks ago and it was a breeze, and this is from a person that practically has to take valium to get my teeth cleaned. You will be fine.

Good Luck!

[

txnmaryann Rookie
txnmaryann
Posted

I had the biopsy 3 weeks ago, and like has been said....it's a breeze. colonoscopy, I've had as well.....NOT a breeze for the preperation, the test itself was fine, they put you out. Having said that.......

I had been very sick with the Big D for over 6 months during this "flare up" (I've had the Big D for 20 years!). My biopsies came back negative, yet what the dr SAW was "atrophy consistent with celiac", I actually have the pictures and it looks EXACTLY like what I saw on the entrolab site, there is a slide on their site showing damage from celiac. This, combined with the fact that after seeing the pictures, I went gluten free and have been D free since......I have my answer! So, don't expect the biopsy to tell you anything. Even my dr. said that with my progress on the diet, it definitley shows I am gluten intolerant. With the Entrolab results, and a successful run on the diet, I don't think I would need more. I am now considering doing the entrolab myself just to see if I have any other intolerances.

Either way you decide.....good luck!!!!!

Amethyst Newbie
Amethyst
Posted

Hi Autumn :) thanks for the welcome.

I had my gastroscopy and biopsies done without sedation or anaesethetic, only a throat spray because like you I don't like them. It was tolerable and got it done much quicker.

Its strange how many opinions there are on if there is any point to the biopsies, in The UK they won't prescribe any gluten free products unless theres been a coeliac positive biopsy, hopefully they will rethink that though.

I have never heard of Enterolab before reading this thread and went off to look. I was amazed. What a simple idea!It seems daft to me to go through a biopsy procedure whilst on gluten free though, and like you I dreaded the loading up period of six weeks because after being gluten free for 30 months my reactionsto even small contaminations were acute! to say the least! But I had no choice I had to find out.

The first few days on gluten were bad but then they became bearable and after 3 weeks I actually started feeling better and pigged on toast lol, I reckoned the damage had been done and that was what had been causing the pain, I still had all the other problems that made me go gluten-free in the first place but I could cope, just.

I knew I was going to go back to gluten-free after the op anyway but I wanted to find out so I would know if my kids were more at risk.... still waiting for my results :rolleyes:

Guest AutumnE
Guest AutumnE
Posted

Thanks everyone :)

I have decided not to do the biopsy. The last thing I need to do right now is go through more medical testing than necessary. Im still waiting on enterolab but am anxiously awaiting results.

Amethyst- gl on the results. Im sorry you have to go through it to get help.

AliceW Apprentice
AliceW
Posted
Thanks everyone :)

I have decided not to do the biopsy. The last thing I need to do right now is go through more medical testing than necessary. Im still waiting on enterolab but am anxiously awaiting results.

Amethyst- gl on the results. Im sorry you have to go through it to get help.

I don't blame you. In contrast to the others who have responded, I had pretty bad experiences with previous endoscopies, and I, too, am debating whether or not to do another one to have the biopsy.

I dread the prospect of another endoscopy...I've had two because of my long-standing GI issues, and both were very unpleasant...I gagged and retched a lot despite a ton of sedation, and felt truly lousy after both procedured because of all the drugs they gave me. I was so out of it it was kind of scary...I could barely walk to the car, and slept for about 6 hours after both procedures.

I'm a little unusual in that I have an extremely active gag reflex...I've never even been able to tolerate tongue depressors or dental x-rays...and also I have an extreme, bordering on phobic aversion to gagging/vomiting...so an upper GI endoscopy is pretty much my worst nightmare. Gah!

Alice

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