Advocate for Yourself

A new study found that when doctors performed endoscopies on people complaining of diarrhea, weight loss, iron deficiency, or anemia, intestinal biopsies to test for celiac were performed only 40-50% of the time. This is shocking given that 1.) diarrhea, weight loss, iron deficiency and anemia are classic signs of celiac disease, 2.) an endoscopy is the procedure used to investigate the cause of these complaints, 3.) you have to do an endoscopy in order to a biopsy, and 4.) a biopsy is the only way to diagnose celiac disease. Why aren’t doctors doing biopsies?! This study doesn’t answer that question, but hopefully their next study will investigate that question.

Doctors are missing celiac disease

The researchers at the Celiac Disease Center at Columbia University Medical Center assert “under-performance of small bowel biopsy during endoscopy may be a major reason that celiac disease remains under-diagnosed in the United States”.

1 in 133 people are estimated to have celiac disease, but 95% of those people don’t know it.

The researchers also found that the rates of biopsy were even lower in men, older patients, African-Americans, and Hispanics.

This study is concerning, not only because those who obvious symptoms of celiac are being missed, but because I can only imagine that the rate of biopsy on people who present with constipation, irregular menses, depression, infertility, miscarriages or joint pain is even lower. These are symptoms of celiac that are widely accepted by celiac disease specialists, but they are not “classical symptoms” that all gastroenterology physicians seem to learn in their training.

The bottom line is:

Advocate for yourself. If you are experiencing symptoms of celiac disease, talk to your doctor. Ask about blood tests for celiac and intestinal biopsy. Bring this newly published study with you and share it with your doctor. A biopsy may not be what your doctor initially recommends, but it is likely the best way to diagnose or rule out celiac disease. Genetic tests for celiac are an option for ruling out celiac, but genetic tests do not diagnose celiac. Genetic tests are helpful when you are debating about whether or not you need a biopsy. If you do not have genes for celiac, a biopsy would not be indicated, however if you have symptoms of celiac AND you have genes for celiac, a biopsy would be indicated.

Resources:

Full text paper (pdf)

Media release summary

Material on this blog is provided for informational purposes only. It is general information that may not apply to you as an individual, and is not a substitute for personalized nutrition or health advice or healthcare. Never disregard medical advice or delay seeking medical care because of something you have read or accessed through this website.

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  1. Pingback: Day 18 -Still No Final Repeated Biopsy Report « I Just Got Cancer

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