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.
What is Celiac Disease?
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.
Genetic testing can be done, but since as previously mentioned that having the genes doesn't mean you will develop the disease, the genetic test can only be used to RULE OUT that you don't have it.
If I could pass on anything personal about the disease, it would be this - It's not anyone's "fault." If you're a parent, you didn't "do" this to your child. If you're a child, you're parent didn't "make" you this way. We all carry around enough guilt and shame in this life. Don't let this be one of them.
How Does Celiac Disease Affect the Body?
As I mentioned above, the antibodies created by ingesting gluten destroy the body. Specifically, the antibodies destroy the villi that line the intestinal wall. Villi (vill- eye) are small finger-like projections that line the wall of the bowel. They're little nutritional vacuums, sucking up all the vitamins and minerals from the food we eat. They absorb the calcium we need for strong bones, the iron we need for red blood cell production, the B6 vitamins we need for metabolism, and the list goes on. Without those little guys, we're just as malnourished as a child living in a third world African country. Our body systems can't function properly without those nutrients, which is why Celiac Disease has so many symptoms and is often misdiagnosed.
Some of these issues can be embarrassing. Before I was diagnosed, I had the most foul smelling gas. Some of the symptoms can be painful. I was plagued with joint pain all throughout college. Some of the symptoms can be highly dangerous. There are many times that I had racing heart rates, which made me anxious that I was having a heart attack. The University of Chicago's Celiac Disease Center has a complete list of the 200+ known associated symptoms. After diagnosis, I looked at this list and realized so many of my random health issues throughout life were on that list.
Among these symptoms are also neurological and mental health issues. I think this is important to include, as anxiety and depression is on the rise in this country. While these are very real diseases which often require medical intervention, it's worth mentioning that the food we eat can play a large part in the way we feel emotionally. There are those with Celiac Disease who may never have physical symptoms from ingesting gluten, but have very serious panic attacks. I personally had one every morning for a year prior to my diagnosis. It's definitely not fun. I also share this for those who may think that "a little" gluten won't hurt someone with Celiac Disease. Please don't mess with our food, because it can literally mess with our minds.
In the next few weeks I'll touch on the social implications of Celiac Disease, as well as how to navigate the diet at home and away. I'll also be working on a list of resources, including how to find a knowledgeable doctor. In the meantime, I'd love to read your comments about what questions and tips you have. This series is a work in progress, and I hope to unite our community for the improvement of us all.
- The gluten free diet; what's safe unsafe, and by whose standards
- Proper physival and emotional care
- Eating outside of the home and other resources