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Exact Details Of Endocscopic Biopsy

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Hi all, I hope you can help me in a hurry. It's been so long since I went through my biopsy that I cannot recall the appropriate methodology for the endoscopy. My mom is having an endoscopy for another reason but had bloodwork done last week that indicated that it might be prudent to check for celiac disease/villi damage. Anyhow I am fairly confident that her GI is not too knowledgable in this area and she won't switch her procedure at this point to someone in the area who is more knowledgable with celiac disease, but she is willing to have her GI pull the biopsy for celiac disease. So now I need to give her very specific information as to what to give to him re: what needs to be done for a proper biopsy. Even if he knows what to do, if nothing else, it will help to educate her. For some reason despite my surfing and net abilities I can't seem to pull this information off the net. Can anyone help me out here? She needs to call him ASAP and so any input would be appreicated.

It's great to finally join y'all. I'm a newbie here.

Thanks so much!



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I don't think I have all the details you need but I DO know that he needs to take something 8-10 samples from various areas of the small bowel. Damage can be spotty and if you take just 2 or 3 samples you can miss it. If he doesn't know what he's looking for he needs to let somebody with more expertise read the slides.



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One thing they need to do when they take the biopsies (and most doctors don't do this) is to look at the tissue samples on the cellular level. I think it is called a celiac disease-3 stain. They can then count the number of lymphocytes (anything over 20 is conscidered celiac disease). This would only need to be done in the absence of visible damage to the villi, but it needs to be specially requested by the doctor or the lab won't do it.

I found this out too late, and since I had no visible damage I do not have the diagnosis. I will NOT do another gluten challenge (the first one was horrible) and so I will have to wait until they accept Enterolab in the mainstream medical field.

God bless,



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    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
    • Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels.   Plumbago
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