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Why Is A Biopsy So Often Necessary When Labs Are Positive?


appletree729

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appletree729 Apprentice

I'm just awaiting my lab results and have been wondering - why is it so often recommended to go get a biopsy if the bloodwork comes back positive?  Especially if it's really positive.  I know the biopsy is the 'gold standard", and I understand the importance of doing it if there are symptoms and the bloodwork is negative because there can still be damage, but I don't understand the justification when the bloodwork is positive.  

 

Isn't the bloodwork (at least one of the tests) pretty specific to celiac?  If you're making antibodies to gliadin, isn't that a big red flag that something is wrong and you should be avoiding gluten anyway?

 

There's obviously something that I'm not understanding fully.  What justifies a more invasive procedure such as a biopsy when the bloodwork seems to tell us that the answer is to avoid gluten no matter what?

 

ps - I am aware of the somewhat newer guidelines that allows a doctor to diagnose celiac without biopsy in certain circumstances, based on bloodwork.  Just wondering why this isn't always the case.


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cyclinglady Grand Master

Here's a link from the University of Chicago's Celiac website that can answer your question:

 

Open Original Shared Link

 

That said, I had a "mild" positive on my blood test.  Seven weeks later my biopsy (they took more than two samples) showed Marsh Stage IIIB damage.  Now, I know exactly where I stand.  I'll have a follow-up blood test and another biopsy in a year.  Hopefully, the damage to my intestines will improve.  If I'm gluten free compliant (via blood test) and I'm still stuck at Marsh Stage IIIB,  maybe I'm getting damage from something else.  At least I have something to compare it to (that's not the wording that I'm looking for.....)

 

Some people just use the blood test since having an endoscopy in itself may be risky due to other medical problems.  They then  try the diet to see if it relieves symptoms.   Later, they may have to have an endoscopy if their symptoms don't improve.

 

Does that help?  

appletree729 Apprentice

yes - thank you.  That does help.

 

Just got my results back and seems it doesn't apply to me anyway.  No antibody detected for me but I am anemic, so they say there is still good reason to go ahead with the biopsy.

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    • knitty kitty
      Welcome to the forum! Keep in mind that if you quit eating gluten before all testing is done, you may have inaccurate, possibly false negative, test results.  When you stop eating gluten, your body stops making the antibodies which are measured in the blood tests.  Stopping gluten before an endoscopy may make the intestinal damage harder to detect, and a false negative biopsy may result.  As uncomfortable as it is, finish all testing before going gluten free.  
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your feelings are completely valid, and I want to commend you for advocating for yourself despite the initial resistance from your doctor. Navigating a new celiac diagnosis can feel overwhelming, especially when you're adjusting to such a big lifestyle change. It’s natural to grieve the loss of your old eating habits and to feel frustrated by the constant label-reading and vigilance required. But please know that you are not alone, and many others have walked this path and come out stronger on the other side. Healing takes time, and while the brain fog, fatigue, and bowel symptoms can be discouraging, they often improve as your body begins to recover. It’s great that you’ve hired a dietitian—that’s a big step in supporting your healing journey and ensuring you’re getting the nutrients your body needs to rebuild. Remember, each small step you take is progress, even if it doesn’t feel like it right now. It’s okay to feel sad and angry, but also try to give yourself credit for your strength in facing this. The fact that you pushed for answers shows how resilient you are. While the road ahead may have challenges, many people find that over time, they feel better than they ever imagined possible once their gut begins to heal. You’ve got this, and the celiac community is here to support you every step of the way. If you have time, this book was published on Celiac.com's and you might find it helpful: Also, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      Welcome to the forum, @Whyz! By "half way to being diagnosed" I assume you mean you have had the blood antibody testing done but not the gastroscopy with biopsy. Is this correct? Were the results of your blood work positive for celiac disease?
    • trents
      Three days of no gluten is not likely to have much impact on serum antibody test results. I have more concern over exactly what test or tests were ordered. When you get the results back, please post them including the reference ranges for the tests for negative vs. positive. What country are you in? Do you have much choice in what doctors you see? Sounds like it might be a good idea to seek out another physician who knows what they are doing in this area of disease diagnosis. At any rate, you have the link I shared above outlining the various tests that can be run so that might be a resource you could share with a physician.
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