National Foundation for Celiac Awareness

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How Common Is Celiac Disease?

Jean's Story

I now believe my date of birth as February 3, 2007, the day on which I started eating gluten-free. Thirty-six hours after eliminating all gluten from my diet, I no longer felt fatigued, weak, or unable to read and concentrate. The balance problem which had me homebound was gone within two months of going gluten free.  I no longer required a cane, walker, walking stick, transport chair, or spouse to get around.  Five months after going gluten-free, I alone removed the wall-to-wall carpet and padding from my office, rolled the four sections up, tied them off, and put them in the garbage container. That is quite a feat for anyone, but I did it at age 67, having spent years in a bedridden state.


I was totally unable to work by age 50, yet Social Security benefits were not available to me because I had no diagnosis as to why I was too weak to work. Without the help of my loving husband, I could literally have been without a source of any income and therefore one of America's homeless.

But now I am not only gluten-free, but am also free to live life with quality and dignity.


I look at gluten now as a poison, as that is what it was to me. I will never intentionally eat gluten again.


Had Kimball Genetics not offered the DNA test without requiring a doctor's order, I will still be bedridden. My having celiac disease should have been obvious to my doctors since it is both an autoimmune and a genetic illness. My medical records clearly show my family's autoimmune disorders, which include a first-degree relative with celiac disease and a grandparent who died from non-Hodgkins lymphoma, a cancer associated with celiac disease. For several decades, I have gone to the right specialists, asked the right questions, given the correct family medical histories; yet not one doctor checked me for celiac disease. This illustrates why all first-degree relatives need testing for celiac. Three first-degree relatives have tested positive for celiac and taken gluten out of their diets.


Celiac Disease: A Hidden Epidemic, by Peter H. R. Green, M.D., has been my celiac textbook. I doubt my doctors have read this book even though I supplied two of them with copies. When I told one of my doctors that 1 out of 133 Americans is thought to have celiac disease, he said that didn't mean they were in our city! Duh! Don't doctors take statistics classes?


Life has answers, but sometime they take a long time to come. Is it better late than never? -- NO. This should have been diagnosed decades ago. Starting life at 67 has its problems. I try not to dwell on what life might have been had I been diagnosed when this disease when it first presented itself at age 11, following a bout with Measles. How much college could I have achieved? How many children could I have had? What would my career have been? The sense of loss can be overwhelming; so I try to look at what life I have left and take one step at a time, with my loving husband still at my side.