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Help Reading Pathology Report


cacampora

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cacampora Rookie

Hi everyone,

I had an endoscopy back in December. The gastroenterologist did not seem very knowledgeable about celiac disease and performed the endoscopy on me without checking if I had been eating gluten. I've learned a ton about celiac since my endoscopy and it seems like I should have been eating gluten for 2 weeks prior to the procedure. I had been eating gluten free at that point since October when my PCP tested my for endomysial antibody {my value was 1:640, range was <1:10} and TTG {my value was >100, range was 0-3}.

I am not a physican so medical speak is a different language to me, but does anyone know how to interpret my pathology report? When I met with the gastroenterologist to go over my results, he said I definitely have celiac disease. Here's what the report says:

Small intestine, small bowel, biopsy: duodenal mucosa with mild increase of intraepithelial lymphocytes.

Examination of levels show duodenal mucosa by the presence of scant Brunner's glands with preservation of the villous architecture. Mild increase of intraepithelial lymphocytes is noted. No widening of villi, crypt hyperplasia, acute inflammatory cells, gastric surface metaplasia or Giardia is noted.

The gastro also had me do celiac blood panel. I did my research on that and did a gluten challenge for 7 weeks. Here are those blood results:

TTG {my value was >250 H, range was <15}

Endomysial antibody SCR (IGA): positive

Endomysial antibody titer {my value was 1:160 H, range was <1:5 titer}

I've now had blood work done twice now that is consistent. I am due to see a new gastroenterologist next month and I'll be sure to bring all my results to that appt. I have no idea what the pathology report means, but the results may be confusing since I was gluten free at that point.

Thanks!


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Scott Adams Grand Master

Based on your extremely high tTG results alone, most doctors in Europe would now diagnose you with celiac disease without an endoscopy/biopsy. What that level means is that you probably had severe flattening of the villi which hadn't fully healed, even though you were gluten-free for weeks or a few months before the endoscopy, there was still damage. 

Another possibility is that your diet hasn't been 100% gluten-free, and this can be true, for example, if you eat in restaurants, as they are a common source of cross-contamination. This article may be helpful in that regard:

 

cacampora Rookie
18 hours ago, Scott Adams said:

Based on your extremely high tTG results alone, most doctors in Europe would now diagnose you with celiac disease without an endoscopy/biopsy. What that level means is that you probably had severe flattening of the villi which hadn't fully healed, even though you were gluten-free for weeks or a few months before the endoscopy, there was still damage. 

Another possibility is that your diet hasn't been 100% gluten-free, and this can be true, for example, if you eat in restaurants, as they are a common source of cross-contamination. This article may be helpful in that regard:

 

Thanks for your reply!

How would you interpret the histology report? My GI hasn't been the best to work with and doesn't respond to any questions/messages I have. I'm looking forward to seeing a new GI next month. My current GI never explained the histology report to me, just said I have celiac. 

Thanks!

RMJ Mentor

The extremely simplified explanation of the biopsy: the only abnormal finding was a mild increase in a type of white blood cells within the layer of cells lining the first part of the small intestine.

Hope that helps!

This abnormality is typically seen in celiac disease.  It is a bit unusual that this is the only thing that was seen, especially with your high antibody levels.

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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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