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Biopsy Questions!
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My doctor called me today saying that they need to schedule me for a biopsy to check for the damage that celiac may have done. They said its not manditory but strongly encourages it. Has anyone had one? What do they do? Does it hurt? Are you awake or asleep? About how long does the whole process take? Any risks involved? Can someone be there in the room with me when they do it? I HATE it when they have to have blood taken every appointment so am very fearful of how I'm gonna handle it if I have to have one. Any pro's or con's if I decide to or not to have one?

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My daughter had biopsy/scope last week. The whole process took about 10 minutes. She was given IV sedation and fell asleep very quickly. They put a camera down the throat and look for damage. They also will take samples of the tissue to look for damage. Sometimes the damage can be seen by the scope itself but often it is only visible under microscope. She was a bit tired when she woke up but could eat and drink. She also had a bit of a sore throat for a few hours after. Most doctors will not confirm celiac without a biopsy.

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It doesn't hurt a bit. They give you cold medication like drugs that make you sleepy

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I have my endoscopy (and colonoscopy) tomorrow so I will let you know how it goes! : )

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They gave me some Benadryl, sprayed some nasty stuff down my throat, then whatever drug they put in my IV put me to sleep. I don't remember anything about the rest of the day except riding in a wheelchair in the elevator, and waking up in my recliner at home. I felt no pain or discomfort, other than that nasty spray.

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The spray numbs your throat. My doctor was going to skip it with me but I have such a ridiculous gag reflex — yawning sets it off — that I asked for it. It tastes a little like rotten bananas and goes away quickly.

But I realize now that I was so out of it, I wasn't about to be gagging on the tube anyway. :)

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I have been on a gluten-free diet & have gotten a blood test. I still have to wait a week for the results though... The doctor said something about if this one thing is high enough I won't need a biopsydone but I can't remember what it was called does anybody know? I was wondering though can they put you to sleep before you get the iv done because I already get freaked out just with needles any thoughts? Sorry if my spelling is bad. I would appreciate some replies. Thank you! :)

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Had mine yesterday and the actual procedure was a breeze! It was the prep that was the worst part.

They do not put you to sleep before the iv, that's how they give you the stuff that puts you to sleep.

They did put me to sleep before they numbed my throat and did everything else though.

Honestly except for being sleepy afterwards I felt great and didn't remember anything. I felt so good I actually wondered if they had done anything to me, LOL.

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It doesn't hurt, and barely felt putting in the IV and whammo, you're out. You most likely won't even know it's been done! You'll be on your way out before you think they even started.

My primary care doc said I didn't need an endoscopy because my blood work was positive for celiac.

However, my GI doc strongly disagreed. She said there are many reasons celiacs should have the endoscopy -- not just to confirm what blood tests indicate.

We (celiacs) often have had years of stomach upset, vomiting, reflux, etc. and during endoscopy they also examine the esophagus for damage or changes from stomach acid, and look for damage in the stomach, test for h-pylori, and look for certain markers, etc.

It's like getting the whole picture of your disease. Personally, I think it's a very worthwhile procedure to have done.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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