by Paul Graham
—
After the bags of blood and electrolytes paved the way for the dual scopes; after all the tests; after boredom and fatigue gave way to a feeling of imprisonment that led me to attempt to get myself thrown out of the hospital—by wandering my floor when Bec wasn’t there, incoherently shooting the shit with anyone who would listen to me, making unsuccessful breaks for fresh air via the elevator, and running in place until the nurses finally relented and removed my monitors—after all this, the Chucklady surprised me with a full lunch of solid food. Beneath the covered dishes was a bacon-turkey whole-wheat wrap with mayonnaise and greens, a bag of chips, some fruit, and a chocolate pudding topped with the same nitrogen-propelled faux whipped cream that my brother and I used to shoot directly into our mouths when we were kids (and into each other’s: “Here! You do me!”). The Chucklady set the tray down with a triumphant smile and a little ceremony. She thought this spread signified progress, convalescence, and hope.
The nurse, who was kind but tired of my insistence that I was not the pathetic fool I seemed to be, came in on the Chucklady’s heels.
“The doctor says that if your system can tolerate this, you can go home.”
I thanked her, waited for her to leave, took a bite of the sandwich, and immediately got a bad feeling. It was the first time my body, completely detoxified of gluten by the gallon of laxatives I’d had to drink for the scoping, sensed something poisonous. I hadn’t been diagnosed, and I did not know yet to avoid gluten, but I knew an aversion when I felt one. I also knew that moving from a diet of clear liquids right to processed meat was stupid. But the doctor making rounds that morning was dangling freedom on the other end of lunch.
I called Bec, who was taking care of some things at the house. I told her what had happened. There was a long pause, which I knew took the place of an expletive.
“He what?”
“I can go home if I eat it,” I repeated. “The thing is, I don’t want it.”
“He sent you bacon?”
“And turkey. Mayo, too. And chips.” I was thoroughly pleased to be throwing this guy to the wolves. He was the hospitalist on duty, and he’d made me his enemy that morning when he repeatedly asked, with more insistence each time, whether I’d been tested for HIV.
“Well, whatever you do,” Bec said, “don’t eat any of it. I’ll bring you something.”
“I kind of already ate some. Because I want to go home.”
She told me to sit tight. She’d be there in a little while with food that wouldn’t kill me. Did I flush the sandwich to make it appear that I’d eaten it? I seem to remember doing this, but I cannot be sure.
The meal was one of the most questionable decisions made by my physicians in several weeks of them, especially given the range of possible diagnoses. Nobody in the hospital appeared to be communicating clearly except for my wife and me. There are days when I still bristle at that doctor’s judgment, though in the end I’ve come to see all of those who examined me as contemporary variants of Samuel Gee, or Aretaeus, or even Willem-Karel Dicke before the Nazis starved the Dutch into eating chestnuts and beans, thus proving that bread can be very bad for some people (truly an odd legacy of the German Occupation). Although I admittedly lack a medical degree, I too was assiduously searching for answers online—and I didn’t do any better than they did.
I’m not certain a doctor someplace else would have immediately diagnosed me accurately, either. Celiac misdiagnoses are common. Some estimates put the average time from first presentation of symptoms to final diagnosis at four to ten years in the United States—which is a long time to be suffering. Most physicians and researchers working on the disease will quickly argue that the medical community has only recently learned to screen for it. Complicating the process is the idiosyncrasy with which the disease can present itself; more than three hundred symptoms have been associated with celiac disease, the most common clustering around gastrointestinal distress and malabsorption. Getting it wrong isn’t cheap, either; misdiagnoses can lead to medical expenses that average around four thousand dollars, between insurance payouts and premiums, over a period of four years. I hit the jackpot with a $24,000 bill, most of which was, fortunately, covered by insurance.
—
I left the hospital that afternoon twenty-five pounds lighter than I’d been at Thanksgiving three weeks prior, with edema in my legs from the massive amounts of fluids I had received, and still no answers. My discharge papers did not list celiac disease; they listed a GI bleed and recommended a diet of clear liquids to which I could add as (or if) I showed progress. Nobody sent me home with instructions to eliminate wheat, barley, or gluten. I think everyone, especially Dr. Sandwich, expected to see me back at the ER in a few days.
It nearly happened. Over the weekend, in order to bring a little cheer into an otherwise dreadful month, Bec hosted her annual Christmas cookie exchange. I heartily endorsed it. My system was totally cleansed, and even though I wasn’t physically hungry, in an emotional sense I was hungry. All of the women who attend this annual event can bake, and not just a little. They’re tempering chocolate, fearlessly blending sweet and savory, making strange and wonderful confections from the countries they’ve traveled to or lived in. I ate a few cookies, and then a few more, and quickly felt the familiar despair return. Something about my mental state, probably a diminished capacity to think owing to exhaustion and malnutrition, once again kept me from connecting my discomfort to wheat. It seems so obvious now.
I was so out of it when my follow-up with the gastroenterologist arrived a few days later that I could barely get myself seated on the exam table. And yet, Dr. Song seemed oddly pleased to see me.
“So I have good news and bad news for you,” he said, the delivery sounding, as did the endoscopy joke, like another industry cliché. “Your condition is entirely curable. But you’re not going to like the cure.”
The test results revealed celiac disease with “99-percent certainty.” The biopsies of my intestinal tissue put the damage to the microvilli between Marsh III and Marsh IIIb (the Marsh scale is a staging rubric for the histopathology of celiac disease), a state that looks flattened, like a city that has been firebombed. The blood tests taken in the hospital showed high levels of gluten antibodies even though I’d eaten very little gluten then.
The cure sounded ridiculously simple. All I had to do, he said, was stop eating gluten. If I cut out wheat, rye, barley, spelt, and oats, I would recover. (Oats, while they don’t contain gluten, are often processed at plants that also handle barley and wheat; even gluten-free oats, however, can cue an immune response in some people with celiac disease because of similarities between the avenin protein in oats and the gliadin and glutenin proteins in wheat. I turned out to be one of those who cannot have oats at all.) Notably, Dr. Song did not name actual foods. He did not say, “Sir, brace yourself. You will never have a slice of real bread ever again, nor will you have a bottle of real beer, a real cookie, or a real pizza.” Rather, if I avoided those ingredients, those agricultural commodities, I would most likely see a full recovery. He stressed that the dietary change was the only treatment available to me. If I followed it, I would improve in time. If I didn’t follow it, more serious complications, like lymphoma, could ensue. Full recovery and healing usually take a few years; it would depend upon the damage and how “compliant,” as he put it, I was with the gluten-free diet. In the meantime, Dr. Song sent me home with a prescription for iron supplements and a handout on celiac disease. He pointed out that there was a celiac support group in town; if I’d been capable of listening closely, I would have understood that this fact augured darkness on the horizon.
In the car, on the way home, I said something like, “Well, shit.”
“Of course,” Bec said, “I will do this with you.”
She meant the gluten-free diet. She was not answering a question but preemptively declaring a truth, as if it were plainly written in the snowy fields. She loved me; she sensed that it would be hard;
she believed that we were in this together. I can’t remember what I said in reply, but nothing, then or now, seems a fitting answer to such generosity.
Neither of us, however, truly understood at the time what this diagnosis would mean. We were not giving up milk, or meat, or even coffee. We were stepping out of Western civilization’s most important culinary and agricultural tradition. We were about to go back in time as eaters, to a period before the invention of leavened bread; when, technically speaking, “bread” could be made out of anything that a cook might grind, mix with water, and griddle into a hotcake. We were about to visit the sad and squalid pockets of eating history, getting by, or attempting to, with what have been described as “breads of poverty.” Along the way we would make discoveries both disastrous and delicious as we battled—against withdrawal first, and then absence—with ingenuity, innovation, and a shit-ton of rice.
* * *
* Among the proto-panophobes was one Simon-Nicolas-Henri Linguet, a public intellectual who—in response to the public outcry in ancien régime France over bread scarcity and inflated prices that helped to fuel the French Revolution—revealed in a letter to his physician the earliest first-person evidence of celiac disease, or at least gluten intolerance, that I’ve encountered: “I have observed from the time I was a child that bread has always disagreed with me; only [bread] in however little quantity I ingested it, always gave me acidity, genuine indigestions.” On the basis of his own aversion, Linguet deduced that the French populace’s obsession with bread scarcity was overblown. Gluten never had a chance to kill Linguet, however; he was guillotined in Paris in 1794.
I know the very last gluten-based food I ever ate—by which I mean intentionally, not by accident or by “getting glutened” (celiac-speak for poisoned) at the hands of an unknowing or careless person, or even a well-meaning friend. This was my third last meal, the last stop on my farewell tour-du-wheat.
I remember it well because the same day Dr. Song stamped my celiac passport, I drove to our health-food store, Nature’s Storehouse. I was filling a basket with yogurt, coconut, aloe vera juice, slippery elm powder, and some other natural remedies that the owner had recommended for ravaged GI tracts,*1 when the idea occurred to me. I texted Bec and told her I’d be just a little longer. Keeping in touch was part of the deal, in exchange for letting me get back behind the wheel. We both knew I shouldn’t have been driving, but she didn’t have the heart to clip my wings, and the store was less than a mile from home.
She should have grounded me, because after my shopping I drove across town to the pub in the Best Western hotel. I walked in and ordered a Reuben sandwich and fries to go. Then I sat down and waited in the lobby while the order was being prepared. As I reclined by the gas fireplace, my head light and buzzing, I considered, distantly and vaguely, what I was about to do to myself.
Well? Why the hell not? What was one more day? How much worse could my gut get?
I had kept craving a Reuben for the several weeks I’d been sick. At odd moments of the day, apropos of nothing, I kept bursting out with “You know what I could really go for? A Reuben!” Bec always looked at me doubtfully; I didn’t seem like a man who could handle a child’s portion of applesauce. I behaved myself, holding to my bland diet of tea, rice, and toast. But in the midst of the Taste Desert, I had never forgotten about getting salt, fat, sour, and cream, all in one bite.
I should have just eaten the sandwich like I wanted to back in November, I thought. I should have eaten ten of them. What had I gained by trying to placate my gut? Nothing.
When the order was ready, I paid and took it to the car. I unzipped my parka, opened the clamshell packaging, and ate the whole thing. I was breaking all the rules I usually worked so hard to honor; the ingredients of this last supper, if that’s what it could be called, were processed and from no place that I could even pretend was local. God only knew where the corned beef came from, and how it had come to be “corned.” I now also know that the industrial bread had been stabilized with vital wheat gluten, and there was likely additional gluten in the Russian dressing.
I ate without any mindfulness. I ate mechanically. Anyone glancing inside the car would have seen a man whose face was utterly blank except for a few stray crumbs. And very white and sickly-looking, too. I was, I now realize, stress-eating. I’d never done anything like this before, but I was so out of my mind that I didn’t even register the strangeness.
And yet, eating the sandwich also felt a little like getting even. A kamikaze valediction. I was going out on my own terms, in a blaze of gluten, not crawling away like some pathetic creature that had been beaten into submission without stealing one last bite. I felt like a badass—until remorse arrived. That took all of fifteen minutes. It was as if I’d swallowed a live grenade.
Though a little crippled, I still had enough foresight to take care of the evidence. I tossed the container into a public trash bin before I pulled away. I drove home with the windows open to disperse the smell of grease and rye toast even though it was twenty degrees and snowing. Thinking about it now, my final encounter with the Reuben even sounds shabby, like a food tryst, right down to the meet-up at the hotel bar. I told myself I had no regrets.
But I did have regrets. I should have ordered extra rye bread and a beer. Two beers.
I suffered through one more day of GI agony while Bec wondered over the cause. I should have told her, but I kept my secret because, by now, I was ashamed: of my stupidity, of my weakness, of the fact that I couldn’t handle what I had just been told by my doctor, and it wasn’t even that bad. I didn’t have cancer; I didn’t have Crohn’s; nobody was going to have to snip away a piece of my colon. It was just an intolerance to gluten.
And had I enjoyed my Reuben?
Years later, I can’t even remember what the sandwich tasted like. All I know is that it’s impossible to get enough joy from one meal to sustain one’s imagination for years. I had eaten takeout, that was all—and middle-of-the-road takeout at that. There are so many better foods that I might have chosen, but I didn’t have immediate access to them, and anyway I don’t think that desperately stuffing my face with a crusty baguette and brie, or homemade ravioli, or a slice of pie would have been any more sustaining.
In the coming years, I would ask almost everyone I know, You’re about to lose everything made of wheat, rye, barley, and oats—all of it, forever. What is the last food you eat? Everyone has an answer. Everyone thinks it’s a good one. Everyone is wrong.
—
Within a few days of that emotional train wreck, the most obvious symptoms of celiac disease abated just as Dr. Song had said they would. I had doubted whether I could really recover even a semblance of well-being simply by cutting out things made of wheat. I hadn’t believed these foods could be harmful because nobody else seemed to think they were, and because wheat and gluten surrounded us, and I didn’t see other people keeling over.
When I accompanied Bec to the grocery store for the first time since coming home from the hospital, I perceived that not just a few aisles, but complete zones of the food world, had suddenly ceased to apply to us. We walked past the bakery section, with its glass cases full of doughnuts and cakes, its faux–French market display of wicker baskets tipped on their sides, spilling heaps of not-very-good bread (but bread nonetheless), rolls, and muffins. We skipped the aisle with the rows and rows of snack bags stuffed with chips, pretzels, wafers, and puffs; bypassed the mosaic of cereal boxes with colorful panels of inane cartoon toucans, tigers, dinosaurs, cavemen, and bandits; avoided the granola and energy bars, crackers, the wall of pasta in every shape imaginable, prepackaged seasonings and soups, prepared meals, and the endless cookies and snack cakes that contained, collectively, enough sugary energy to propel a rocket into low orbit. And I couldn’t even bring myself to look in the beer cooler. Our store had a gluten-free corner—it would be an exaggeration to call it an aisle—but we didn’t investigate its offerings yet. I was still subsisting on clear broth.
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None of these foods were, as I would learn to think of it, for me. Some of the international aisle still applied, as did the produce and dairy departments, but I estimated that well over half the grocery store was lost. And while most of it was processed junk that our great-grandparents would not recognize as food, let alone a Mesopotamian farmer grinding wheat flour millennia ago, many of them had formed the tastes of our childhoods: Oreos, Trix cereal, cookie-dough ice cream. They also comprised a garish world of convenience foods and guilty pleasures in the present. The more I thought about it, the more I felt as if I had been suddenly exiled from American food culture. Meanwhile my wife was expatriating herself, willingly turning in her passport to an entire world of food just to come along with me.
In fact, we had rarely eaten most of these processed foods, and hadn’t brought them home in a long time. Doritos, SunChips, prepackaged doughnuts, Mallomars: we’d nearly forgotten they existed. Same thing with imitation crabmeat (which contains gluten, believe it or not), Cheez-Its, and ramen. Not long after Barbara Kingsolver published Animal, Vegetable, Miracle, Bec and I became invested in community agriculture, shopping mainly at the farmers’ market and living off our farm shares. Kingsolver’s book, which was so inspirational to many people but tricky to imitate for a variety of reasons—including, most important, access to time and money—nonetheless awakened us to the joys of the agriculture community in our backyard. We were already ripe for conversion because of a cluster of books and authors we read at that time, including Michael Pollan and Wendell Berry. We extended our roots further into the North Country soil, and slowly transitioned to a heavily local diet. The “locavore movement” has its share of doubters with valid criticisms, but despite the long winters, local eating is easier in the North Country than in most places, provided you’re fortunate enough to have the resources (money, knowledge, and time) it requires.