May Is Celiac Disease Awareness Month

May is designated Celiac Disease Awareness Month. As I’ve gradually healed and continue to heal since my diagnosis roughly a year ago, I’ve begun to understand how important it is to raise overall awareness of this disease. While celiac disease is an autoimmune disease that affects roughly the same percentage of the population as type 1 diabetes, it has had a much lower level of recognition. In large part, that’s because it tends to have a more gradual onset presenting with over 300 possible symptoms. While some people are impacted so severely by celiac disease that they experience major distress, like kidney failure, in a fairly short period of time, most of us experience the slow development over time of a bewildering array of seemingly unconnected symptoms. In fact, I didn’t even recognize some of my symptoms as symptoms until they began to fade when I eliminated gluten from my diet after my diagnosis.

Study after study tells us that the vast majority of people suffering from active celiac disease remain undiagnosed. In that sense, I’m one of the fortunate few. My family doctor was alert enough to tie unusual blood work with several other seemingly unrelated things and referred me to a gastroenterologist even though I was not specifically complaining about any digestive tract symptoms. (I did and do have a number of such symptoms, but they developed so slowly that I didn’t notice the onset and were not severe enough to trigger any awareness that something was seriously wrong.)

The blood tests for celiac disease have now been improved to the point that, given its prevalence and difficulty of diagnosis, it should become one of the things for which we routinely screen. We know that 95% or more of those with active celiac are undiagnosed. We know that they have a 500% higher risk of developing certain cancers, are at a greater risk of developing other autoimmune diseases, and are at risk for a host of other long-term health problems. Further we know the disease is notoriously difficult to diagnose correctly from symptoms alone. Since we have pretty accurate blood tests now (which was not true as recently as 10 years ago), why would we not screen for it?

The Celiac Nurse has posted a great article for Celiac Disease Awareness Month that, among other things, provides the links to her year-long, in-depth articles on the categories of symptoms associated with celiac disease. I strongly recommend taking the time to read her post and the linked series. It’s very likely that somebody reading this post has celiac disease and doesn’t know it.