Today’s post is for my fellow celiacs who have lived with this damn diagnosis for awhile now (five years for yours truly) and are well and truly over it. This isn’t a “yay we can do it!” post – this is a “yeah but WHY” post.
This month is Celiac Awareness Month! Celiac disease is “a genetically-based autoimmune disease that is triggered by the ingestion of gluten — a protein found in wheat, barley, and rye.” It’s surprisingly common — as many as 3 million Americans suffer from it. And I am one of those people.
I was diagnosed in early 2011. After nearly a year of unexplained symptoms and bouts of sickness, I finally visited my doctor. I wasn’t sure what to say except “What’s wrong with me? This can’t be normal. (Can it?)”
I was lucky enough to have a doctor who is both aware of celiac disease and knew the right way to test for it (the average diagnosis takes 6 to 10 years). She ran me through all kinds of tests to find out what exactly was the matter with me. A blood test came back slightly positive for celiac and she encouraged me to confirm the diagnosis with a GI specialist by undergoing an endoscopy.
I was not thrilled by this diagnosis (understatement of the year), nor was I eager to undergo an endoscopy. But I did it and the diagnosis was confirmed: celiac. The GI specialist gave me a packet of materials and sent me on my way — the only treatment option is to adhere to a strict gluten free diet. And that’s about all she told me.
So I left and was completely at a loss where to start. (Luckily, I had a good friend with the same diagnosis who was a huge help. She showed me that gluten free living could be done, and it could still be tasty. Even so, I felt a little bit weird calling her up to say: “Teach me!!”)
I started by cleaning out my kitchen. Goodbye: flour, cereal, bread, pizza, soy sauce, pretzels, couscous, and so much more. I think I went through at least three more rounds of cleaning. I’d do some research and then realize that, for example, I needed to replace my wooden cutting boards and toaster. Then the next time I pulled out my apron and hot pads, a cloud of flour came with it. Then I’d realize that I hadn’t looked at things like sauces, veggie burgers, and salad dressing. The list goes on.
It was extremely overwhelming. And I felt lost and alone.
Fortunately, I was surrounded by supportive friends and family (in particular, my now-fiance). I’m also one of those people that believes that all answers can be found in a book — you just have to find the right one. I went to Borders (remember those?) near my office and picked up gluten free cookbooks and a Complete Idiot’s Guide to Eating Gluten Free book. A few friends mailed me gluten free cookbooks and many more shared well wishes with me. I read a lot. I signed up for celiac disease email lists and scheduled a visit with a nutritionist. And slowly: I began to learn.
The treatment has been one of the most challenging parts of the diagnosis. On the one hand, I am lucky that my treatment plan doesn’t involve costly medication or surgery — only a change in my eating habits (albeit an expensive one). On the other, it’s a lifelong change that is complicated and affects your life every single day, one that most people don’t or can’t grasp how complex and difficult it is, or how pervasive gluten is in the food that we eat (but that’s a story for another day).
Symptoms of celiac disease vary, and most people (more than 80%) are un- or misdiagnosed. Serious complications can result from undiagnosed CD, so if you suffer from any of these symptoms, I encourage you to talk to your doctor about getting tested for celiac. Today. (Or sometime this month.)