My Rare Disease Part 10: A Note on Celiac Disease

Back to Part 9: Diagnosis ~

It has been nine years since my diagnosis, and I am still learning. I am sure I will never stop. I consider myself lucky in that, after all I went through, I was diagnosed with a condition that is controllable. Celiac disease is an autoimmune disorder in which the small intestine is destroyed when gluten is ingested, thereby impairing the body’s ability to digest food and absorb nutrients. Gluten is a protein found in many grains, including wheat, barley, and rye. These ingredients are hidden in more common foods than anyone who isn’t forced to think about such things would imagine, including soups and broth, seasonings, marinades, and a host of processed food ingredients. Celiac disease can be triggered by stress, a viral infection, or any life-altering event. Symptoms mirror those of many other illnesses and include diarrhea, gas, bloating, lethargy, weakness, malnutrition, anemia, and quite a few more, many of which are caused by complications from the persistence of other symptoms. Though it is often misdiagnosed and even more often undiagnosed, celiac disease is not rare.

It is now estimated that 1 in every 100 people in the United States has celiac disease. An astounding 97% of those people are undiagnosed (p. 3 Green, Jones). In their book Celiac Disease A Hidden Epidemic, Peter H.R. Green, M.D. and Rory Jones point out that “Celiac disease is the most common—and one of the most under-diagnosed—hereditary autoimmune conditions in the United States today. It is as common as hereditary high cholesterol.” Although celiac disease has been widely recognized in Europe for many years, it has, in America, been deemed as rare—a puzzling conclusion considering the high ratio of Americans who hail from European descent.

I constantly read updates on celiac disease research, and it is finally gaining recognition in this country by both the food and the medical industries. Nine years ago, when I lay in that hospital bed listening to the doctor explain how rare celiac disease was, I believed him. Since then, I’ve learned a few things, including the fact that celiac disease is much more prevalent than was once thought. I know full well that the amount of gluten necessary to cause a negative reaction is unknown; that trace amounts of contaminants must be avoided; and that the problems caused by this disease are internal and potentially not even perceivable. Still, I sat in silent awe five years after my diagnosis as my new doctor explained that a certain medication probably didn’t contain “enough” gluten to cause a reaction.

Celiac disease is not rare. I will repeat this as many times as is necessary for the rest of my life. At the time I was diagnosed, it was simply not well accepted by the American medical profession. That is changing.

Green H.R., Peter, M.D. and Jones, Rory. Celiac Disease A Hidden Epidemic. 1st ed.
New York: HarperCollins, 2006.


I hope you enjoyed reading “My Rare Disease,” though by now, we all know this disease is not rare. Dire need for better awareness and understanding persist. Please consider making a donation to one of the many organizations that are now striving to perform research and offer education regarding celiac disease and gluten intolerance. Thank you for participating in this journey. Mush!

National Foundation for Celiac Awareness

Celiac Disease Foundation

Celiac Sprue Association

University of Maryland Center for Celiac Research

University of Chicago Celiac Disease Center

Celiac Disease Center at Columbia University

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