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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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      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which...
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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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