Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Biopsy, What Should I Know?


Guest AutumnE

Recommended Posts

Guest AutumnE

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 :)

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor

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. :)

Link to comment
Share on other sites
Guest AutumnE

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.

Link to comment
Share on other sites
Lisa Mentor

When is your appt.?

Link to comment
Share on other sites
VydorScope Proficient

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:

Link to comment
Share on other sites
Guest AutumnE

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.

Link to comment
Share on other sites
Amethyst Newbie
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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest AutumnE

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.

Link to comment
Share on other sites
VydorScope Proficient

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.

Link to comment
Share on other sites
Guest AutumnE

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.

Link to comment
Share on other sites
Guest nini
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.

Link to comment
Share on other sites
Terch Apprentice

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!

[

Link to comment
Share on other sites
txnmaryann Rookie

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!!!!!

Link to comment
Share on other sites
Amethyst Newbie

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:

Link to comment
Share on other sites
Guest AutumnE

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.

Link to comment
Share on other sites
AliceW Apprentice
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

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,209
    • Most Online (within 30 mins)
      7,748

    Yankavich
    Newest Member
    Yankavich
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
    • Bayb
      Hi, I received my labs via email yesterday and have not heard back from my doctor yet. Can anyone tell me if these results indicate I have Celiac?      Endomysial Antibody IgAPositive  Ft-Transglutaminase (tTG) IgA6  H0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10 - Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten-sensitive enteropathy. FImmunoglobulin A, Qn, Serum55  L87-352 (mg/dL) Ft-Transglutaminase (tTG) IgG183  H0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9
    • Aussienae
      Mine is definitely triggered by inflammation and stress! I do also have arthritis in my spine, but the pain is more in my pelvic area. Im sure i have other food intolerances or other autoimmune isues but the more I focus on it and see doctor after doctor, it just gets worse.  Best thing is get of Gluten! (I also avoid lactose). Try to limit stress and anything that causes inflammation in your body.
    • ButWhatCanIEat
      Good morning,   I got an email about replies to this post. Some of my doctors had blamed a slipped disc for the pain I had and that contributes, but after meeting with a gastroenterologist AGAIN and trying some lifestyle modifications, I found out I have IBS and can't tolerate corn or excessive fructose to any degree. Cutting out corn AFTER having cut out all gluten containing products was a real pain but I feel much better now!
    • trents
      So, I contacted Scott Adams, the author of that article and also the creator/admin of this website, and pointed out to him the need to clarify the information in the paragraph in question. He has now updated the paragraph and it is clear that the DGP-IGA does serve the purpose of circumventing the false negatives that IGA deficiencies can generate in the tTG-IGA antibody test.
×
×
  • Create New...