I’ve been living with Celiac Disease for over a decade. A lot has changed since my diagnosis 2003. I’ve learned so much along the way, in small bits and pieces, and continue to learn more every day. I’m an educator by training, so maybe that’s why I’m a Celiac Disease advocate. If I’ve learned something that can help someone else, I feel like it’s my obligation to share.
Over the next few weeks, I’m planning to share factual information about Celiac Disease. Maybe you’ll learn something. Maybe you’ll share it with someone else who will learn something. Either way, I hope to make living with this disease a little less overwhelming.
Celiac Disease is an autoimmune disease. This can be confusing because sometimes you’ll even hear someone with Celiac Disease refer to it as an allergy when we’re eating out. (More on that on another day.) An autoimmune disease is a “disease in which the body produces antibodies that attacks its own tissues, leading to the deterioration and in some cases the destruction of such tissue.” Examples of other autoimmune diseases include Type 1 Diabetes, Lupus, Rheumatoid Arthritis, Multiple Sclerosis and more. To make it more interesting, autoimmune diseases are like birds – they like to flock together. When someone has an autoimmune disease, they are likely to develop another one later in life. We’re a blessed bunch, aren’t we?
Celiac Disease is also a genetic disease. This means that the “code” for this disease is passed on through our genes to our offspring. For example, my grandmother and father both have Celiac Disease. Interestingly enough, simply having the genes for this disease does not automatically mean that you will develop it. Thirty-five to forty percent of the general population carry the HLA DQ2 of HLA DQ8 genes, but only 1% of them will actually develop Celiac Disease. We’re not really sure why some develop Celiac Disease and some don’t.
So how does one get tested for this autoimmune disease? The two B’s – blood work and biopsy. And for these tests to be accurate you have to “B” eating gluten. (See what I did there? I’m so punny.) Doctors traditionally order a Celiac Disease panel that screens for the tTg, EMA, and DGP antibodies. If those come back with a high level of antibodies, the next step is a small bowel biopsy done via endoscopy Before you panic, an endoscopy is performed by passing a tube through the throat, so there’s no need to drink the “junk” prior to this procedure. People sometimes comment that it’s highly invasive. Sure, there are some tissue samples, but more cutting and anesthesia is given when someone has their wisdom teeth out. It’s really not that bad. At least in my opinion.