Last September I got an answer to a decades-long medical mystery. After spending over half of my life enduring an odd conglomeration of symptoms and emotionally-devastating weight issues a couple of simple blood tests put a name on the source of my issues: celiac disease. It was a phone call that changed my life and I had never felt so relieved in my life. For the next few hours I was utterly elated. I celebrated by ordering a big, nasty pizza from Pizza Hut and feasting only to spend the rest of the night horribly sick and in pain–the same thing I had experienced with nearly every meal for years. Yes, I celebrated the discovery that gluten is poison to my body by stuffing my face full of gluten.
It wasn’t my best moment, but it was a very telling moment. A diagnosis of celiac disease (or even gluten intolerance) requires a major change in one’s approach to food and how they interact with it. The simple convenience of ordering a pizza on a night when I’m just exhausted no longer safely exists. The majority of my cookbooks are somewhat useless to me. I was about to descend into a world very foreign to me and though I read lots of websites and books I still found myself lost. Nearly a year later I am still eating gluten and spending a disproportionate amount of my time suffering, something that is somehow tolerable because it’s all I know.
Why? Why do I do this to myself? Why do I put myself through sleepless nights spent being miserably ill and wake up so stiff and sore that walking a few yards to my kitchen for coffee is nearly impossible? A case could be made for a lot of “reasons” that are just excuses, but it all boils down to one: I have no idea how to effectively make the major lifestyle change required to transition myself to health. Yes, I have read blogs and books and asked questions and meal-planned, but the reality is that there is truly no guidebook to this sort of thing. It is all trial and error because everyone’s life is different. So many sources suggested that I do epic meal prepping (the cook everything for the week on Sunday sort of thing) but it isn’t practical for me. I’ve discovered that I hate most prepackaged gluten-free breads and pastas that would make my transition more seamless. I can’t just dump out all of my foods that contain gluten and replace them with safe foods because it’s expensive. Every day is an obstacle course. Some days I do better than others. Some days I just don’t care.
The diagnosis was just the first step, but there is no map for this. I think that is what makes all of the criticism of the “gluten-free lifestyle” so irritating to me, those people that try to claim you’re faking or that what you are dealing with isn’t real just because you have a slice of pizza or because you don’t want to be left out when your amazing coworker brings in her to die for cupcakes. This is hard, trying to navigate a food world where most foods you grew up with you can’t touch. On some level it’s like dealing with an addiction as well, as you know the food will hurt you but you can’t help yourself. When others criticize? It is the absolute least helpful thing in the world. It actually just makes it all worse.
Tomorrow I’m going to try again. This weekend I’m going see what I can do about being better prepared. I’m even going to try preparing a couple of days in advance. Since there is no guidebook I will just have to write my own.