Living with Celiac Disease

There isn't a day that goes by that I do not find myself having to explain to someone about my kids food allergies, autism, Graves disease or celiac disease. I really don't expect people to understand about these things unless they are affected by them directly and for the most part I don't mind talking about any of it. What does surprise me is when I find myself having to explain one of these things to someone in the medical field.

Not long ago we had another emergency room visit with our youngest and I had to list his food allergies for them. Later, when she realized that I had a total of seven children, one of the nurses asked me about them. We talked about how two of my children had autism, we talked about food allergies and I listed every food that the kids were allergic to and mentioned that my youngest daughter had celiac disease. That's when I got the question.

"What is that?"

I do not expect to have to explain celiac disease to someone in the medical field unless they practice something like dentistry or ophthalmology. I should not have to explain to a doctor or nurse in the emergency room the nature of a disease and how to treat it, or in the case of celiac disease, what not to do for fear of aggravating it. They should have this information, but as I am finding out, a lot of them do not. In fact, outside of the field of endocrinology most doctors don't have any experience with celiac disease. Because of this it takes the average person eleven years to get diagnosed after the onset of symptoms.

Celiac disease is an inherited autoimmune disorder that affects multiple systems of the body. It is the most common genetic disorder, affecting 1 in 133 people, and also the most commonly misdiagnosed. Those, like my daughter, with celiac can not digest the protein gluten that is found in wheat, rye and barley. Eating gluten sets off an immune response that causes damage to the villi in the small intestines (the hair like projections that are responsible for absorbing nutrients from food).