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Biopsy Results


cbcc1997

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cbcc1997 Newbie

Good morning. I received a call on Friday that my biopsy was consistent with Celiac Disease. I received the report today and I am confused with results. This is what it said...

Patchy mild increase in the numbers of intra-epithelial lymphocytes.  The finding of intraepithelial lymphocytosis with preserved villous architecture is a non specific immunological phenomenon that has a large number of possible causes. A mild histological manifestation of gluten sensitivity is one of these causes. 

It then goes on to say that Serology for tissue transglutaminase/deaminated gliadin peptide antibodies is recommended. I believe that is the blood test which I have and is negative. There could by many causes that would increase the numbers. 

Has anyone experienced any report like this? Since my blood test was negative and there could be other causes, do I actually have Celiac Disease?

Thank you. :)


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cyclinglady Grand Master

The TTG and the DGP tests are pretty specific for celiac disease.  You need to take a serious look at exactly what celiac blood tests were given.  Did you have the IGA deficiency test as well (it is a control test)?  Were you consuming gluten daily for 8 to 12 weeks prior to the blood draw?  This is the complete panel:

 
-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
(Source: NVSMOM -- ?)
 
How many biopsies were taken?  At what locations? I personally tested positive on ONLY the DGP IGA and the rest of the celiac blood panel was negative, yet I had severe damage.  They diagnosed you with a Marsh Stage I but there could be more damage.  The small intestine is the size of a tennis court if spread out.  Finding damagd  areas is easy to miss.  
 
I recommend that you follow the advice of the pathologist and have the COMPLETE celiac panel done.  Be sure to keep eating gluten.  And finally, do some more research on celiac disease.  We are talking about your health.  Untreated celiac disease leads to CANCER! ?

 

Welcome to the forum and let us know how it goes! 

 

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    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
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