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should I get the endoscopy?


Madame Trixie

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Madame Trixie Newbie
First off, thank you so much for this page., it has helped me immensely in the last year. I need the  communities help me understand my test results and wether or not I should get a biopsy done. My t-Transglutaminase (tTG) IgA was <2 or negative, BUT my Immunoglobin A, Qn Serum was 64 Low. I have read that is can cause a false positive. "In some cases, the TTG IgA test result can be “false negative” – that is, results come back negative, even though celiac disease is actually present. False negatives can occur for various reasons, but the best known cause is a condition called IgA deficiency that people are born with. This immunodeficiency occurs in about one in 600 healthy individuals but is much more common in those with celiac disease." I have been gluten free for the last year and feeling a lot better.
It seems the next step would be the endoscopy and biopsy. How important is it to get a firm diagnosis of Celiacs for my health, if i just continue to eat gluten free? Thank you, Nicole

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kareng Grand Master

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."

 

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Madame Trixie Newbie

It does look weird. Let me re-post it.

First off, thank you so much for your web page it has helped me immensely in the last year. I need the community's help to help me understand my test results and whether or not I should get a biopsy done.

My t-Transglutaminase (tTG) IgA was <2 or negative, But my Immunoglobin A, Qn Serum was 64 Low. I have read that is can cause a false positive.

"In some cases, the TTG IgA test result can be “false negative” – that is, results come back negative, even though celiac disease is actually present. False negatives can occur for various reasons, but the best known cause is a condition called IgA deficiency that people are born with. This immunodeficiency occurs in about one in 600 healthy individuals but is much more common in those with celiac disease."

I have been gluten free for the last year and feeling a lot better. It seems the next step would be the endoscopy and biopsy. How important is it to get a firm diagnosis of Celiacs for my health, if i just continue to eat gluten free?

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      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
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      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
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      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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