Janie, was diagnosed with Celiac disease in January of this year. Celiac disease is, basically, a body’s inability to process gluten. It damages the vili in the small intestine, making it near impossible to absorb nutrients. This causes many symptoms including fatigue, chronic diarrhea and the inability to locate your work badge. I was pretty unhappy about it because I’m a real fan of waffles and cheeseburgers, but not both at the same time. Her mom had been diagnosed a while before and suggested Janie see her nutritionist to be tested as well, because Celiac disease runs in their family like the ability to ignore someone and make them feel invisible runs in mine. The nutritionist ordered blood tests before her scheduled appointment and we eagerly awaited the results to see if, in fact, she bore the mark of a Celiac. About a week later, off Janie went to see Dr. Fran while I surrounded myself with bags of flour and grain alcohol for a heartfelt farewell.
She came back with a page-long list of foods she could no longer eat, including wheat, barley, oats, quinoa, milk, corn and sugar. I no longer knew what she could eat, so for dinner that night I gave her a bowl of rice. We talked very little of the results because I’d never been a believer in nutritionists and the manner in which hers tested for these other food “intolerances.” She used a technique called “applied kinesiology” or, muscle testing (or, a bunch of hoo-ha). This is basically, in my totally biased opinion and incredibly limited knowledge of the subject, where the nutritionist puts something in your hand, like a sugar cube, and presses down on your other arm. If that arm falls, you’re intolerant! That’s why when I shake the hand of a religious person, my other hand drags on the floor.
My first response was to tell her that we’d get through this together, that we’d manage to find delicious recipes using ingredients like water and magic. I did try. I read Gluten-Free Girl and any other website I could find. I ordered books from the library and Amazon. I went to the store and bought some vegetables and meat, safe things that had no suspect ingredients like “spices,” “natural flavors,” or “anything remotely delicious.” I even found a small gluten-free section with gravy mix to put onto our spice-less meat. I returned home, triumphant and of the belief that this was all going to work out. Until she couldn’t identify an ingredient on the gravy package and we had to throw it away. I felt like a failure, and I felt a little cheated. It wasn’t her fault that she had a disease I’d never heard of and thought, for several days, maybe didn’t exist. It wasn’t my fault that my body loved a donut. I had no other options left but to drink a lot of wine very fast.
I mostly stopped drinking after my 21st birthday when I threw up on my sister’s head in a bar (true story). When I do drink, it’s usually no more than a sip or two before realizing that drinking is not something I enjoy. The idea of a glass of wine is infinitely better than an actual glass of wine or, in this instance, a bottle and a half. I got very drunk and very upset and cried a lot. I lay in the bed and wept hysterically, profusely apologizing to Janie for about three straight hours. I don’t know what’s more humiliating about this moment in my life, the fact that I was such a drunken wreck over my wife not getting to eat toast anymore, or that Janie had no idea I was even drunk. Because apparently I become inconsolable and babble incoherently in the dark of our bedroom at 7pm on a Friday night often enough that it didn’t seem totally out of the ordinary. She only realized it hours later when, in the middle of the night, I was head-first in the toilet.
This was the beginning of what we refer to as “The Very Hard Time” in our relationship. We fought for several weeks as I slowly accepted the fact that our lives had to change. I took solace in the fact that Janie was starting to feel better, physically and emotionally, and that what she could only describe as a fog that she’s been living in for over ten years was beginning to lift. She could concentrate and had more drive. Maybe she’d finally do some laundry. I’m an emotional eater, so when I get emotional I like a donut or a cookie or something made with flour. It was extraordinarily difficult when I was getting emotional about not being able to eat Oreos and wasn’t able to console myself with a box of them. Reading this, it might seem as if the notion of arguing over a cooking staple is pretty ridiculous, but that’s because you don’t know me very well yet. I have a lot of feelings.
It’s been almost a year since the original diagnosis and we’re doing much better. I’ve learned that I’m still able to have a sandwich, but more often than not I do it at work or when Janie’s out with friends. I try to eat the same meals as she does, which makes sense because I do most of the cooking. We’ve managed to find out that once you get the hang of reading labels and knowing what is poison and what isn’t, this Celiac business isn’t all that hard. Sure, she can’t have most baked goods but, honestly, she never ate them much before. We are lucky to live in a city that’s pretty accommodating for those with Celiac disease. There are several bakeries and stores with prepared foods that she’s able to have. Most restaurants are able to meet her specifications and she doesn’t have to break out of her shell to explain why she’s requesting that salad without croutons. She can have all the sushi she wants which is a big deal, because she would probably eat it every day if it wouldn’t bankrupt us.
The biggest challenge now is helping friends and family understand what her limitations are. They get that she can’t have a roll at Thanksgiving dinner, but don’t yet understand the instances where it isn’t obvious. They make a huge effort, though, and that’s what matters most of all. She’s able to take care of herself when it comes to only putting things on her plate that she can eat. But every once in a while, my dad is sure that she should be able to eat something that she can’t and insists, “Of course she can eat it! It’s delicious!”