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.

Comments

3 comments
Comment:
  • Sweet Christines gluten-free confections
    Jul 23, 2011 Zubair uddin (anonymous) email: Uddinzubair@yahoo.com said:
    Hey I've been diagnosed with both celicas and ulcerative colitis. The uc is confirmed however. My I've been told I have celicas. Then just to get am second option I went to another doctor where he told me I sky have celicas how ever I can develp it in the future I was given the genetics test which showed positive he told me I may have an chance of getting it but it's 50% how is that possible. Can it be it's an cause of my ulcer colitis? I'm tired of trying to find answers. Thank u
  • Sweet Christines gluten-free confections
    Aug 15, 2010 nancy j Lavin (anonymous) email: nlavin1562@aol.com said:
    Hi and your blog is wonderful. have just had time to look at it longer than two seconds.
    I don't know why I had so much trouble before.
    The info is very helpful, and I will be back here.
    I have missed getting to the store and seeing you all.
    Still feel that food is the enemy, and have not found a comfortable diet, that doesnt take me forever to get ready. Having known food was the enemy for years, the difference is now I know why. I had my three things I ate each day, Now I have to find those three things again. Like I said before I wish my house was across the street from me. I am however able to pick them up in more stores. Thinking of you all, with a lot of love. Nancy J Lavin.
  • Sweet Christines gluten-free confections
    Aug 15, 2010 nancy j Lavin (anonymous) email: nlavin1562@aol.com said:
    Hi and your blog is wonderful. have just had time to look at it longer than two seconds.
    I don't know why I had so much trouble before.
    The info is very helpful, and I will be back here.
    I have missed getting to the store and seeing you all.
    Still feel that food is the enemy, and have not found a comfortable diet, that doesnt take me forever to get ready. Having known food was the enemy for years, the difference is now I know why. I had my three things I ate each day, Now I have to find those three things again. Like I said before I wish my house was across the street from me. I am however able to pick them up in more stores. Thinking of you all, with a lot of love. Nancy J Lavin.

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The Gluten-Free Resource Education Awareness Training (GREAT) program was created by the NFCA to educate all food and hospitality professionals about Celiac disease and the gluten-free diet. 


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