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About JEB

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  1. Seven months ago, I broke out in hives that turned to blisters. My dermatologist ordered a panel of blood test but came back negative for celiac. Then, after six months of watching this spread over my body and scalp, he biopsied a blister that came back consistent with DH. I ran to the internet and discovered the celiac link. I called my gastroenterologist and scheduled the test. ( He was the same one that diagnosed me with IBS 25 years ago. ) He said it was a waste of time but ran the test which came back positive. Two weeks gluten-free and all the GI symptoms were gone. Unfortuately, I was now on Dapsone. My folates are still out of range and I am anemic because of the Dapsone. Over the years there have been so many unexplainable medical events in my life. One of them was two years ago, when I started having retinal bleeding. I lost the sight in one eye. Since being gluten-free, that eye has stablized and the "good" eye has cleared. Good medical support is the most challenging thing about this disease. Finally, we traveled 500 miles to the University of Chicago celiac center where the right tests for absorption were done. Getting diagnosed early would have been a blessing. Now, my daughter can benefit from this knowledge.