Misdiagnosis of Celiac Disease

Published Monday, March 30, 2009
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I suffered from being misdiagnosed by doctors who were not on top of the condition. It hurt me greatly but now that I know more about Celiac disease I understand what causes doctors to get it wrong.  The bottom line is Celiac disease is not well known and often overlooked. I had a number of diagnoses, all which were wrong and extended my suffering and pain. Celiac disease is often misdiagnosed as irritable bowel syndrome or another chronic digestive disease. In cases where the main symptoms are non-digestive symptoms such as anemia and fatigue, the condition might be misdiagnosed as chronic fatigue syndrome, depression, or other fatigue-causing disorders.  I was even told I had Multiple Sclerosis.  That was an extremely scary experience. 

Doctors Get it Wrong & People Suffer 

What many doctors don't know is celiac disease also can manifest itself in ways that have nothing to do with the digestive system. Doctors usually misdiagnose it, mistreat it or miss it altogether.  According to Reader's Digest, Celiac Disease is one of the top 10 misdiagnosed diseases.  That raises the awareness but is little comfort to those of us who have been misdiagnosed.

 
 

Good news – Celiac disease is being diagnosed more today, but test are still imperfect

 

Doctors often misunderstand how best to diagnose this disease, and because of that patients are often misled. Nowadays doctors screen for celiac disease with a blood test called "tissue trans-glutaminase" (TTG) to determine whether or not this enzyme is present in an abnormal form (which is the case in patients with celiac disease). However the test has an 80% sensitivity, which means that 80% of the people who have celiac disease test positive with the TTG test, but 20% of the people who test positive do NOT have celiac disease.

Good information is available

I am offering information on my website about Celiac Disease and other websites such as the Celiac Sprue Association and NFCA are excellent sources of trustworthy information.

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