Amy Leger
Amy Leger (aka The Savvy Celiac) continually uncovers and shares great information on celiac disease research. This post in particular talking about the underdiagnosis of celiac disease in the United States is an eye-opener in terms of what we are and aren’t doing. Hopefully, the new guidelines that were put in place will make the difference.
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“New research out this month investigates why there’s such a high rate of “under-diagnosis” of celiac disease in the United States. Researchers said doctors performing biopsies on the small intestine may be, in part, to blame for the 97%* of the celiac population that remains undiagnosed.
Most of us who have experienced a celiac diagnosis (or suspected celiac) have gone through a biopsy after testing positive to blood tests. The biopsy is considered the gold standard in celiac testing. But what many of us may not have known, until this study was released, is that the recommended guidelines for a celiac biopsy say doctors should take at least 4 samples in the small intestine.
The Celiac Test Research
According to an article in e! Science News and research published in the July issue of Gastrointestinal Endoscopy, researchers looked at the records of 132,000 patients who had had a biopsy of the small intestine for a variety of medical symptoms : diarrhea, abdominal pain, esophageal reflux and anemia. Plus, doctors suspected celiac disease — only 35 percent of the patients had at least four samples taken.
“Celiac disease can affect the small intestine in a patchy distribution, and so just one or two biopsy samples could potentially miss the evidence of the disease,” said lead author Dr. Benjamin Lebwohl from the Celiac Disease Center at Columbia University Medical Center.
So what was the most common number of specimens taken? 2! What may have happened if the correct number of specimens was taken? The article explains “adhering to the recommendation of submitting at least four specimens more than doubled the diagnosis rate of celiac disease…”
See the entire post from The Savvy Celiac Website »
5 comments
Moreen Gover says:
Jul 9, 2011
I’m not surprised.
Paulette Ysasi says:
Jul 9, 2011
Figures. Lucky for me I do not lend my trust to Dr.’ concerning much, especially my Dis Ease. (In 03 they wanted to do exploratory surgery, NO Thanks) I thank spirit for guiding me to health with the assist of impeccable warriors like Ms. Amy Leger. ~Namaste
Krissy Jones says:
Jul 9, 2011
I’m pretty sure this EXACT thing happened to me! Had an Endoscopy about 3 years ago (back before I had even heard of Celiac) and nothing “abnormal” showed up. I went to med doc after med doc… Only to completely remove wheat and then gluten on my own. What do you know, no meds and no more stomach pains, other stomach issues and the “acne” that covered my back went completely away! I never trust medicine (as in medical doctors)! It was long after I had removed gluten that a ND did a fecal test to confirm my diagnosis!
Gluten Free Frugality says:
Jul 9, 2011
This is unfortunately not surprising, plus a lot of people have gluten intolerance or sensitivity which won’t show up on a biopsy anyway.
Amy Leger says:
Jul 10, 2011
Thanks for the repost!