This Christmas was a turning point. For the first time, I came home to celebrate Christmas as a celiac. The traditions that define Christmas are gift-giving, yule longs, mistletoe, and a feast. One realizes as a celiac how much of our holiday traditions revolve around food. Being celiac turns a person into an outsider in all sorts of sudden, surreal ways. When one speck of gluten can damage my health for months, I develop a different way of looking at a loaf of french bread, a Christmas cookie, or a beer. For me, those things are poison, and the holidays are forever altered.
Last year I was in Argentina for Christmas, which now, seems like a wonderful strategy for a celiac (travel!). Perhaps it was a “should,” but I wanted to tap back into our family traditions. I flew in from Oakland to New York (where I checked out the city’s wonderful pioneering gluten-free restaurants, and then took a bus to Rhode Island). Christmas cooking preparations started early this year with phone calls and emails traded with my parents. We knew this year would be different, though we followed the same patterns that we usually did for our meals.
On Christmas Eve we gather at my father’s and stepmother’s home for dinner. (Even my mother and her husband come.) My father and his wife usually serve a takeout lasagna from one of the Italian shops in Providence. My dad called me in early December to ask me how we should handle dinner. I had sent a link describing how to cook for a celiac a few days before. He was appropriately intimidated. Cooking for a celiac requires scrutinizing ingredients for hidden sources of gluten and notes about where the product was manufactured, a dedicated cutting board and at the least very, very well scrubbed pots and pans (to rid them of gluten). I don’t eat a friend or family member’s food unless I train them.
During the phone call, we decided I would bring my own gluten-free lasagna. That would be safer. Initially I felt jangly from the call, moody and unloved. I was angry my father did not want to learn how to cook gluten-free for me. I told my father, “This is going to be for life you know. You are never going to learn the basics of how to cook for me?” But then I realized my emotions were preventing me from seeing my father for who he is. My father is not a cook (he’s one of those vegetarians who subsists on packaged foods). He was showing me he loved me by reaching out to figure out what we would do. So I told him I appreciated that and thanked him. That gathering went fine. It’s the right approach for a celiac to simply bring her own food in tupperware, then slide it on a plate when it’s time to eat. I abstained from the salad, normal lasagna, bread, and desserts. My family was worried about me feeling deprived. I wasn’t worried about feeling deprived; I was much more worried about getting poisoned. Not eating a Mexican chocolate cookie is no big deal, but being exhausted for weeks is.
On Christmas Day my mother hosted a gathering for her extended family. She planned to cook some gluten-free dishes, including a roast and braised cabbage. The ambition got us into trouble. My mother is a fantastic cook and an RN; she has a lot of experience with avoiding contamination. At my request, she bought a separate dedicated cutting board, knife, two fry pans, and she washes her hands before cooking with certified gluten-free hand soap I brought home from Whole Foods (yes, even hand soap may contain gluten). But it’s impossible to not miss errant gluten; manufacturers put it in so many processed foods. For example, she used spray butter automatically before frying our hamburgers, and the spray butter bottle says “may contain wheat.” There’s no substitute for me observing and making sure that nothing contains gluten. She doesn’t like the word “supervise” so we can call it “consult.” Whatever you call it, it’s exhausting to watch someone cook and pounce on them any time there is a gluten alert.
We put in a lot of effort to cook gluten-free, but once the extended family arrived, I could see that there would still be possibility for cross-contamination. Two of my aunts were wonderful, and totally got what’s needed to prevent cross-contamination, but even with their help, the very structure of a potluck event doesn’t work for a celiac. Everyone nibbles before the dish is served, and people are also nibbling on crackers. A crumb is enough to activate the autoimmune response. Being a celiac means being constantly vigilant. I did not have the energy to police. My cousin wanted to make her pineapple bread stuffing in our kitchen. My uncle was cutting the roast and I hadn’t asked him to wash his hands–and he had been eating crackers. The mayhem. The chaos. I decided to eat only only the cabbage that had been covered the whole time and my gluten-free lasagna leftovers (which were tasty).
The best part of the Christmas meal today for me was explaining celiac to my cousin Kerry who has a thyme allergy. As we sat down to eat, Kerry asked me what happens when a celiac eats gluten. I explained that a tiny speck destroys the villi in our intestines, and then we can’t absorb food, and that leads to diverse symptoms, and increased risk for cancer and other autoimmune diseases. The damage can take three months to heal.
Her mother (my aunt) is getting married New Year’s Eve. Kerry asked me what I will do for food. I said, “Oh, I will bring my own, it’s easier.” She said, “That’s a fucking pain in the ass.” I smiled and laughed. I was so happy for her candor. Yes, it is a fucking pain in the ass to always bring your own food. Thank you for naming it! I feel so tight pretending all the time that being celiac is just fine. It is not just fine, for so many reasons, most of them having to do with the appalling lack of regulation on gluten disclosure in food and drugs in this country. It often feels like a part-time job, if not a half-time one, to stay safe (researching and making calls to manufacturers).
I often feel there is prohibition in this country against complaining. The happy, spiritual, socially acceptable cheery person puts the positive spin on something like celiac disease: such as, Oh, now I have such a healthy diet! I have learned all these wonderful recipes! I cook all my food at home! Oh yes, it has been a blessing to have this gene trigger in my body to cause it to attack itself at the slightest 1% of a bread crumb! And now, all my boyfriends get asked to brush their teeth before they kiss me! Their teeth are so white and clean!
Barbara Ehrenreich named “our love affair with positive thinking” in her 2009 book Bright-Sided: How Positive Thinking is Undermining America. She got her inspiration for the book when she was diagnosed with breast cancer and found a tyranny in the pink-ribbon culture to look for the silver lining of the disease. I feel the same way about celiac. I want to enjoy my life and don’t want to live in anger, but I’m not going to lie to you and tell you that living a strictly gluten-free lifestyle is a blessing. I would prefer to tell you that I want laws to force manufacturers to disclose whether food and drugs contain gluten, and I want a drug that will allow my body to consume that teeny bit of gluten without sending my intestines into self-destructive mode (such a drug is in development). Putting the positive spin on things can feel fake. Fake feels tight and pinched and like we don’t get to truly connect about what is real. Sometimes being celiac really sucks, and dealing with being celiac at the holidays is one of those times.
The gift of celiac at the holidays is that it has stripped away all the nostalgic associations. Now it’s crystal clear for me: I love my family and I don’t love these gatherings.
As I get older, I get more and more attuned to the knowledge that life is meant to be enjoyed. I am less likely to do things because of habit or tradition, and more likely to ask, Do I actually enjoy this? Do I want to celebrate Christmas the way I always have? The decision will be much clearer for me in the future to celebrate the holidays in a nontraditional way where food is not the centerpiece. Perhaps by making sure I am in another country in December. Perhaps smaller gatherings. Perhaps my mother and I will invite people over just for dessert or serve an exclusively gluten-free meal for a smaller crowd. No more going on automatic pilot, no more illusions that following the old template works. The future is up for definition.