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Blood Test Results Vs Small Intestine Biopsy


GladGirl

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I realize that having been diagnosed by a Hematologist who ran all the blood tests for Celiac Disease on me is not considered the "gold standard". However, after having been through surgery to remove my gallbladder and a very painful biopsy on my liver, I really didn't feel the need to go through yet another "invasive" procedure. Some have questioned me about my ttg level and all I can say is it was my IGA positive results that the Dr. has used for my diagnosis. Here is a short synopsis from our very own library on this site, to explain that type of usage:

"IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur."

This excerpt is from "Interpretation of Celiac Disease Blood Test Results" by Scott Adams located on this site for Diagnosis information.

At this point in my life, almost 60 years of age, I really do not feel the need to digest "gluten" again just to please the medical community or others. With the wonderful results of my newest blood work since being gluten free for 3 months now....I do not want to reverse this process of feeling so much better.

I have been in contact with a support group close to my area and hope my search for a "celiac wise" Dr. in family practice or internal medicine close by can be found. So far, one of the mediators for the group said the Gastroenterologists they have had "cut them lose" to fend for themselves since diet is the treatment. Really?? What a need in the medical community then, even to Pediatricians, OB/GYN, and Dentists! From the short amount of research I have been doing, we need to be monitored at any rate about our nutrient sufficiency and proper treatment when prescribing any medications. That certainly leaves a huge gap since our population is so infected. Try telling your current Dr. he is wrong to prescribe you a medicine!! Mine yelled at me!! Not willing to take that again!

Sending you all well wishes to our healing process! :)


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      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
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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. 
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      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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