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Low Biopsy Rates Contribute to Celiac Disease Underdiagnosis - Newswise (press release)


Scott Adams

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Newswise (press release)

Under-performance of small bowel biopsy during endoscopy may explain the underdiagnosis of celiac disease in the United States, according to a new study published online in Gastrointestinal Endoscopy. Investigators at the Celiac Disease Center at ...

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IrishHeart Veteran

Sure kept me from being diagnosed. <_<

My doctor failed to biopsy me when he did an endoscopy back in April 2009 and declared me "anorexic" with some "gut irritation" and prescribed Ensure and 3 other meds for a severely burning gut. None of that helped at all. (anorexia? huh? I had been overweight for years!)

Finally DXed 21 months later, after I had become severely ill and had desperately researched everything about celiac disease, I obtained copies of that endo report and saw : NOPE, no biopsy was done. (If had known back then what I know now, of course, I would have pressed for the biopsy.)

In January 2010, When I asked AGAIN if it could be celiac, the NP snarked at me "you don't have SPRUE!!".... he "went down there" last year. (yes, but he did not biopsy me, you idiot)

It did not matter that my weight had plummeted 90+ lbs., I was losing my hair and muscle mass and had B-12, Folate and iron deficiency anemia and D or the other 60 or so symptoms.

I was going to die and this "highly regarded" GI doctor did not seem to notice.

When I sent a letter to his office telling him and his NP that it WAS celiac after all and the chronic "IBS" and "GERD" they had been "treating " for 12 years was GONE and they were totally WRONG about my DX and left me ill for so long, I received no reply.

Then again, I did not expect one.

Two other people I know who had this doctor remained UnDXed as well--for years. I sent them to my new GI.

Are they celiacs too? Yep. You betcha.

squirmingitch Veteran

I love that they pointed this out!

"Biopsy rates were also lower among older patients, African-Americans, and Hispanics. Dr. Green added,

IrishHeart Veteran

and not just a stereotype of a young Caucasian--but he should have added:

It is still considered a "rare childhood disease"

That's the rap I was given repeatedly. It's what most docs still believe.

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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. 
    • 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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