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

Scott Adams

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Scott Adams Grand Master
Scott Adams
Posted

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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
IrishHeart
Posted

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
squirmingitch
Posted

I love that they pointed this out!

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

IrishHeart Veteran
IrishHeart
Posted

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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      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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