Coping With Celiac Disease

by Carol
(NJ)

My story is that I was diagnosed with Celiac Disease some twenty plus years ago. Living with Celiac Disease was not easy then, as not as much was known about it. Doctors were reluctant to make the diagnosis because of the seemingly severe change in diet and lifestyle.

When I first became ill I had to be hospitalized because all the out-patient testing came back negative. I was in the hospital for about 10 days and they did every possible test imaginable, including EKG’s. I had lost 20 pounds in about a month and could no longer control the vomiting and diarrhea. My electrolytes were out of balance, hence an irregular heartbeat and the need for the EKG’s.

Once diagnosed, I learned a great deal in a very short period. I joined a small support group that met once a month. We shared recipes, brought in samples of our baked goodies- cookies, cakes, muffins, and especially breads, none of which were available commercially at that time and shared stories of our dining out experiences, some of which were disastrous!

I think worse than being diagnosed as an adult were the stories I heard of children and the not-so-easy times they were having adjusting to not just the diet, but the dilemmas of what to bring to school for lunch, class birthday parties, and the like.

Thank goodness for The Celiac-Sprue Association and their efforts to educate and build awareness about the disease.