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Celiac Not So Rare Afterall


Travis-Hiland

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Travis-Hiland Rookie

I would like to re-affirm any motion carried forward on this forum that Celiac is not so rare afterall.

I believe most Celiacs can attest to the lack of understanding and underrecognition of Celiac Sprue in the U.S. medical community. My wife was finally, officially diagnosed nine months ago, after the 12 years of symptoms, the severest of which manifesting during the final 6 years before diagnosis.

Research shows that Celiac is probably the most underdiagnosed condition in the U.S and affects more people than Crohn's disease, cystic fibrosis, multiple sclerosis, and Parkinson's disease combined. Yet 97 percent of the people with celiac go undiagnosed. Incidently, outside the U.S., Celiac disease is recognized as one of the most common genetic conditions in the world!

In 2004 the National Institute of Health Consensus Conference on Celiac Disease validated a study conducted by the University of Maryland's Center for Celiac Research (CFCR). They concluded that 1 out of 133 people in the U.S. (3,000,000 people) are at risk for celiac disease. Also very revealing, is the associative risk amongst immediate family members.

Celiac disease is known to occur in 5-15 % of children and siblings of those with the disease. The results of one study indicate that one out of 22 first-degree relatives of a celiac have the disease as well. While other studies show that immediate family members have up to 30% chance of carrying the genetic markers for celiac. In 70% of identical twins, both twins have the disease. It is recommended therefore that both first and second degree relatives of a celiac be tested as well. And finally, since Celiac Disease is an autoimmune disease, it is suggested that people living with other autoimmune disorders, like Diabetes, Addison's disease, Rheumatoid arthritis, Lupus, MS, Grave's disease, and Hashimoto's thyroiditis, should be tested as well.

It behooves anyone at all affected by Celiac, including family members, to become overnight spokespeople for the disorder. The medical community at large in this country are grossly misinformed and underinformed about the symptoms, the risk factors, the genetic predispositions, and ultimately how easy it is look for markers in a simple blood test. Learn as much as you can about the disease here: www.celiac.org and www.celiac.com, and share your story with as many as will listen. You may be able to inspire professionals and friends alike, and shorten someone's time to diagnosis and healing, which is currently averaging about 11 years! Imagine what is must be like to have to wait 11 years before you hear that you are not crazy afterall, you really were sick, but no one understood. For my wife, it was 12 years, and symptoms had to escalate to life threatening levels before diagnosis was ultimately reached.

Travis Hiland -www.travishiland.com


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