This is the last in a four-part series of stories that came from support research for a piece on Dining Out with Allergies. For more, read Chef Gavin Kaysen’s confession to having Celiac Disease, an interview with Chef Lynn Bound and Marcia Polas’ Confessions of a Celiac.
Confession: I can’t eat dairy, gluten, and a few other things.
But I write about them.
Technically, I write about people who make food — over 120 of them to date — a niche I purposely worked myself into so that I could write about food and people but not have to eat things that make me sick. But that formula has worked only about 90% of the time, and there are certain circumstances where I pester my “testers” about food I can’t eat, or take nibbles and suffer the consequences on my own. Before I get to explaining how that works, here’s my backstory:
Why I can’t eat things:
I got Lyme disease when I was 12; I woke up one morning not able to move my legs, and it took months of off diagnoses, minimal hours at school, massive amounts of antibiotics and a whole lot of patience to keep things floating. I can only now imagine what my poor parents were going through, shuttling me up and down stairs and in and out of a car whilst hobbling on crutches when I was able or carrying me / pushing me in a wheelchair when I wasn’t. To this day, I’m still sometimes overwhelmed by the joy of being able to walk.
It wasn’t until I went to a naturopathic doctor (yes, he was a real doctor) that we started seeing changes in my health. I was taken off a long list of foods — wheat, oats, dairy, sugar, eggs, beef, pork, nightshade vegetables, citrus — and put on streams of intravenous vitamins weekly, on top of the antibiotics dripping daily into my arm. After a few weeks, symptoms that hadn’t abated from months of medication started to lift and, within six months, I was “healed”.
I watched those foods generally throughout my teens, suffering through pints of Ben and Jerry’s with girlfriends in high school, and incorporating rice milks and odd gluten-free breads when I felt I needed them. My freshman year of college I tempted fate by eating mac and cheese with the best of them, drinking beer and not thinking anything of… well, anything. Within months I was getting massive headaches and stomachaches, to the point migraines would keep me holed up in my room. By second semester I pulled off of those danger foods again, and started boiling white rice in my dorm room to go along with chicken breasts I’d cook weekly in a friend’s apartment, with containers of steamed broccoli and salads filling up my two mini-fridges, while my friends gorged on cafeteria foods downstairs. By my sophomore year I was back on weekly injections of antibiotics, massive doses of supplements and those vitamin drips again; I could still walk, thankfully, but started getting arthritic symptoms in my neck and spine, and the headaches had turned into blacking out in class, or violent anxiety attacks that came without notice. I pulled through, and was much more careful with my foods going forward.
One more painful bout of symptoms had me out of work and homebound in my mid-twenties, and food was of such a disinterest that I was lucky to get 500 calories a day, and dropped thirty pounds without thinking about it; my food-focused extended family was worried. I just felt sick.
Now, in my early thirties, my body is somewhere in the middle. Gluten and dairy have been out since college, but now I’m very strict about them. I cook all my non-dining-out meals from scratch, and am currently on a program to help figure out what “healthy” foods are causing me inflammation, as some symptoms aren’t going away and must be threatened by something my body can’t process. My focus always has to be on putting anti-inflammatory foods in as much as possible; dark greens, carrots, ginger, tumeric, cinnamon; though not too often so that I don’t start developing adverse reactions to them. My symptoms are disguisable enough; most people I work with don’t know that at my worst it hurts horribly to walk, which petrifies me, or that it takes a lot of self-discipline to manage my health in general.
But I’m a happy person; I feel whole, and as healthy as one who’s lived with an immune disease for 20 years can be. I’m thankful my illness is a largely invisible one, and that only those who know me intimately see its breadth.
So why don’t I write for gluten-free publications, or make that my work’s focus?
I have a tricky disease that is not researched nearly enough and affects the many people that have it differently, so I’ve learned that self education, regulation and responsibility are vital. My body is mine; it’s my responsibility to take care of it, physically and spiritually. But, sometimes, feeding my body spiritually means that I might take a few sips of beer or a half piece of crusty, fresh baguette once or twice year.
And admitting something like that in the gluten-free world is asking for crucification.
I had a baking blog for many years that’s still technically up today: The Dusty Baker. My bio on there reads, “I love food. I don’t see my allergies as banners to be waved around. I dislike trends. I respect chefs. I speak politely with servers.”
I very, very much see food issues as vital to dealing with various chronic illnesses, but I disagree with any “one sized fits all” approach. Yes, if someone has Celiac disease they know gluten is the culprit. But the body is a wild, wild west of a landscape, and everyone’s is different. We can only be responsible for our own bodies. And this is where I get hung up on writing about or representing any community.
A few years ago I worked for a gluten-free magazine and edited their blog. I was also a private chef at the time, and took my summer week off to meet another private chef in northern California. He discovered that his favorite brewery was close by us in Sonoma, and as we sat to lunch he ordered one of those massive beer samplers, with about 2 dozen shot glasses of small-batch beer ready for the tasting. I hadn’t had gluten in a long time, and decided that the culinary experience would trump the sluggishness I’d feel afterward, knowing that I could trust the work I’d done with my body and that it wouldn’t lead to anything serious (even my current doctor – an amazing specialist who’s done so much good for me – tells me that my body can handle certain indulgences now and then). I took some sips. Sips. And tweeted excitedly about it.
A strange tweet exchange started with another gluten-free eater, who accused me of making those who can’t eat gluten feel bad by my confession. I don’t have Celiac disease, and my twitter handle, blog and byline all confirmed that, yet I was being called out by another who judged my choice for expressing myself honestly to be wrong. I wrote a piece about it intended for my own blog, which the editor of the magazine decided to put on theirs. In it, I basically said “we all have issues with gluten here. This is a meeting point for the gluten-free community, not the Celiac community.” I pointed out how protective I am of those with Celiac, and how we need to strengthen education about gluten for that reason, but that we all don’t eat gluten for our own varying personal health reasons, and those should be respected by others. I spoke about inclusion and support and community.
I was crucified. Some people threatened to cancel their subscriptions, others said I should be fired. I had one woman declare I wasn’t legit, and was only “dipping my toe” into the gluten-free life. I technically had the support of the owner, but they didn’t make a public statement for either side, and the editor I had worked with intimately for a year — who knew my issues specifically — didn’t help at all with a misleading statement to combat comments on her Facebook page.
It hurt. While others came to my side, it soured the experience for me as a writer. Those with special needs do need to keep themselves safe, yes. But we’re each responsible for ourselves, and that includes what we deem to be safe or unsafe for our own bodies; I’m in love with food, and those few sips of beer were heaven.
How I work now:
See those pastries up there? They’re all packed with gluten and dairy. I wrote about all four of them. I only nibbled at one.
I don’t often write about food itself, but last summer found myself in Cincinnati with a series of pieces approved, and started combing the greater city area for the most exciting savory meals and pastries, including the Cronut craze that had also come from New York, a few weeks before my arrival.
Now, I have a background in pastry; I’ve been building both gluten-free and non-gluten-free recipes for years. I know how various doughs, methods, techniques, and traditions work. I can tell by touch how something is going to break down in the mouth. I have a pretty solid palate and can pick out various scents rather easily. And, most importantly, I know the right questions to ask.
All of these pastries were sampled by a group of people, who knew of my work and gave thoughtful answers to my questions. Rather than one person critiquing, as often happens in internet writing, I’d have four or five or seven. From that I was able to pull out differences in preference as well; at one point I had people from various backgrounds and cultures weighing in, which I believe brings far more well-rounded results.
When covering food events — for which I do not review any food but rather report on what was offered and the success of the event itself — I always request a second ticket for my photographer, who tastes things for me, or for my own “taster/assistant” to come with me. They do the eating I can’t and, again, I ask them and the chefs who are preparing food enough questions to get as specific as possible.
In both circumstances, I often nibble what I can around things I can’t. And, in general, I don’t have to spell out what something is that often as I’m, thankfully, not a critic.
And other stuff:
Why am I coming out with this now?
Because coming out next week is a monster of a piece; an etiquette guide to dining out with allergies. For it, I interviewed chefs, restaurant managers and servers from around the country, along with a friend of mine in Denver with severe Celiac disease. My MO with writing pieces on other people is that I keep myself out of it as much as possible but, for this, my editor wanted my input and pushed me to accept that I have a very solid history with these issues that make me a trusting and valuable voice for how others can navigate dining out with restrictions. In the general food world I rarely pop up with my own dietary issues, which is rather ridiculous given that I’m personally very cool with them.
The one pastry up there I did nibble? I didn’t confess to the chef what I can’t eat, and so just very carefully took tiny bites that he wouldn’t notice, and pretended to eat things I didn’t while his head was turned.
But the many voices I’ve recently spoken with make me feel a bit more fortified in stating that, yes, I have allergies and I write about food. Both can live in my world, and my choices about what I eat and what I write are justified by my extensive experience with both. If my food issues came to such severity that my work was compromised because of them, I would back out and change trajectory. But, for now, I’m going to write until my fingers bleed.
For more, read:
A full interview with Chef Lynn Bound, who caters generously to those with allergies.
An interview with Marcia Polas, who has Celiac disease and some strong opinions about it.
An interview with Chef Gavin Kaysen, who publicly stated he has Celiac disease for my article.