by Paul Graham
In the grocery store, though, I felt keenly that a locavore diet was different from an elimination diet. Philosophical inclination was different from medical mandate. As a locavore, I knew I could at least have a Dorito, or a handful of Nilla wafers, if I wanted to. Did a GF Nilla wafer exist? Did I even want to know?
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When I finally began to absorb nutrients, I found that I could think more clearly. Questions started forming: Where the hell had this come from? Why had it come for me? And why now?
As far as I knew, I was the first person in my family to be diagnosed with celiac disease. Double-win: I was also the first in my circle of friends. When Bec and I went to visit our families in Maryland for Christmas, I sat at the kitchen table with my parents over a dinner of gluten-free lasagna (the Tinkyada noodles, which are made of brown rice and do the job credibly), and we struggled to recall anyone in the family who might have had celiac disease. None of us excels at genealogy or family history; those who did have passed on, taking with them stories and information that have only recently piqued my curiosity. I had always known that we were generally a healthy and long-lived group on both sides. The majority of my relatives suffered from the typical physical deterioration that comes with old age. Unclaimed by cancers or cardiac events or infectious diseases in their sixties and seventies, they went out peacefully in their eighties and nineties. Some had died of pneumonia or heart failure. There was not a confirmed celiac among them.
Nor could my parents remember hearing about a family member who had suffered from anything like celiac disease back when it might have been misdiagnosed as a stomach infection, an allergy, or an irritable bowel. Both sides of the family were big gluten-eaters, because both sides were cheap. Bread, pasta, and dumplings figured prominently on the family tables. As my mother tells it, her family featured few if any accomplished cooks. My father’s mother cooked well, albeit with as much red meat, butter, sour cream, sugar, and even lard as possible, accompanying all of it with gluten in some form. The Grahams packed away the cold pasta salads and beef Stroganoff over egg noodles and breaded pork chops and cookies. They appear to have made a concerted effort to avoid nothing except alcohol and chiles. I did, however, recall a family joke about my paternal grandmother barking at my grandfather to “take a Tagamet!” whenever he felt uncomfortable, which must have been frequently enough for us to find fun in parroting her. That was my only clue, and it wasn’t helpful.
“I wish it had been me, instead of you,” my mother said to me, the implication here being that I still had half my eating life ahead of me, whereas she had eaten her fill. Of course this wasn’t true.
I did not point out that there was still time for her to present celiac disease, if she was carrying the gene. Or for my father, God help his beer-loving soul. Three things must happen for a person to “get” celiac disease: they must have the genetic predisposition, in the form of the HLA (human leukocyte antigen)-DQ2 or -DQ8 immune-response gene; a trigger, possibly an environmental factor, has to activate the gene; and they have to be consuming gluten. The HLA-DQ2 and HLA-DQ8 immune-response genes are common: according to the University of Chicago Celiac Disease Center, about half the American population carries one of them. There is a one-in-twenty chance of developing celiac disease if a person has the DQ2 gene, and one-in-fifty in the event of DQ8. (This is why celiac disease is estimated to be the most common autoimmune disorder in the world.) What causes the gene to “turn on” remains a mystery. It might have to do with levels of gluten consumption, but just because I presented celiac disease at a time when I was eating so much bread and brewing so much beer doesn’t necessarily mean that the baking and brewing caused celiac to occur, though some theories about causation say that my dietary habits might have been a key factor.
Dr. Song had told me in his office that diagnosis used to come most frequently in a person’s fifties or sixties, often after a physical or emotional trauma (I had suffered neither). Recently, however, better testing and awareness have led people of all ages, including infants, to be diagnosed. The increased prevalence cannot simply be explained by improved screening, though. A recent study by the Mayo Clinic, which compared blood samples collected in the 1950s from young airmen to those of a contemporary cohort, suggests that the genetic predisposition for celiac disease is more widespread in the American population than previously thought, and that the incidence has climbed by fourfold in the last fifty to seventy years. For decades, Caucasians exclusively seemed to be prone to celiac disease (Swedes and Finns especially), but diagnosis rates have been increasing all over the world, including places where researchers once thought they’d encounter few if any cases, such as China.*2 Of all the statistics, perhaps the most alarming is the estimate that more than half (58 percent) of the people who have celiac disease are undiagnosed—sufferers of “silent” celiac who do not experience overwhelming symptoms as I did, but who nonetheless are suffering from intestinal damage. This means that people in my family could in fact have had the disease without knowing it.
Outside of my parents, my brother was the most likely to be a carrier of the genetic predisposition. The chances of a first-degree blood relative like a brother or sister having the gene if another sibling does is about one in twenty. (Other researchers have put the risk for first-degree relatives of celiacs as high as one in ten.) Like all genetic diseases and disorders, the emergence of celiac disease in a family can prompt some tough questions: Do the other family members get tested now, or later—if and when the symptoms start? Should a person like my brother go preventatively gluten-free, moderate a little, or eat and drink as much gluten as he can hold while his body can (apparently) still handle it? Should he take better care of himself in general, so as to minimize the stressors that may turn the gene on? Since that winter when my gut flamed out, no one else in my family has been tested. The genetic test involves only a mouth swab. And yet it seems, from conversations I’ve had with other celiacs, that many siblings do not want to know whether they have the genetic predisposition. They’d rather enjoy a full table until they present symptoms—if this ever happens.
I get that. I wouldn’t have wanted to go preventatively gluten-free if a family member had been diagnosed, either. But unchecked, celiac disease can lead to an increased cancer risk; and those who go undiagnosed, or are “noncompliant” with the gluten-free diet, have by some estimates a 400-percent greater chance of mortality by age sixty-five. Other complications, such as hyposplenism, infertility, and high rates of miscarriage in female patients, have been linked (although some recent investigations into the effect on female fertility in particular have yielded no statistically significant data). In the wake of a diagnosis, specialists often order bone-density scans, since a person who isn’t absorbing iron also isn’t absorbing calcium or vitamin D, and so has a higher risk for fractures. Children suffering malabsorption from undiagnosed celiac disease can experience slower growth rates and slower cognitive development, and are at risk of developing other illnesses. The list of things that can go wrong when you’re not getting nutrients is idiosyncratic—and long.
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Among the many things my gastroenterologist could not tell me was how long it would take my body to detoxify from the gluten. Having uncontrolled (or recently-brought-under-control) celiac disease is a little like knowing a parasite lurks in your body, with the curious twist that your own body is manufacturing the parasite. My antibody results*3 sounded disturbingly high, though when I checked into the online celiac discussion boards where people flash their numbers like battle scars, I found scores two or even three times higher. I took some small comfort in this. I had a long way to go, but I was better off than some.
I was anxious to see progress not only because it would mean I was healthy again, but also because I would be able to return to real eating—albeit within my new limitations. After two weeks of broth, I transitioned to bland meat, rice, and vegetables. After a while on that fare, I would be able to add dairy and spices, and
then foods that were more inflammatory, provided that everything was going well. I tried not to think about the low percentage of cases where a gluten-free diet doesn’t work, though I sometimes worried that I would turn out to be one of those especially unfortunate souls cursed with “refractory” celiac disease, which calls for a more aggressive treatment plan with immunosuppressant drugs. The odds of having refractory celiac were not minuscule, but low: 90 percent of people with celiac disease respond to a GF diet and show recovery within two years. Most of the time, however, I wondered about more extreme scenarios, including far-fetched circumstances I wouldn’t be able to control. For instance, what would happen in a national emergency, when the grocery stores all closed or were looted, and the National Guard rolled into town in their armored cars to distribute bottles of water and crates of food to sustain the community until life returned to normal? How much of those emergency supplies would I be able to eat? Would this be the moment when evolution caught up with me, and the Great Boot, which had tried to kick me off the planet in December, finally landed squarely upon my ass? I imagined a smiling staff sergeant, feeling a little like Santa Claus, handing me Pop-Tarts, or those little sandwich crackers with the brittle layer of cheese in the middle, or packages of hermetically sealed Wheat Thins and Triscuits. And what would I do then? Ask for an apple? My only choice would be to head into the fields and woods, where I would begin foraging for berries, acorns, and wild leeks. I would try, without success, to kill a squirrel with a slingshot. I’d be a good bet to poison myself with a mushroom I wanted to believe was a morel. It’s the sort of thinking that turns a newly diagnosed celiac into a GF prepper who builds a bunker and stocks it with GF supplies.
I wouldn’t have shared these musings with anyone, but people who are recovering from bad cases do sometimes need to be talked down. It’s not unusual for GI doctors to assemble a team to respond to the first few months of recovery or even longer, including any specialists one may need to see because of complications (neurologist, rheumatologist, orthopedist, etc.) and a registered dietician to help address the nutritional deficiencies from malabsorption, as well as to help navigate the demands of a gluten-free diet. Between the chemical and emotional withdrawal, the sudden holes in their diet, and the inevitable encounters with sources of cross-contamination, many people are bewildered after cutting gluten. For as much as I knew about food and cooking, I could have benefited from a few conversations with a dietician, especially because recently diagnosed celiacs have intolerances to foods that don’t contain gluten. In the forums online, I read lamentations from people who were “six months gluten-free” or longer about their inability to eat lactose, canola oil, soy, legumes, fish, cheese, and many other foods they had been consuming without discomfort only a year ago. I discovered “safe” and “not safe” lists all over the internet, and while there is agreement on the dangers posed by many foods (such as soy sauce, which clearly contains gluten), I also encountered fierce debates and outright misinformation: for a time I was glued to a discussion thread about whether the molecular similarities between the proteins in gluten and coffee, of all things, meant that a celiac needed to eliminate his morning cup. I was so horrified that I never plumbed the scientific basis for these claims. No fucking way, I thought. I’ll give up beer if I have to, but I won’t give up coffee, too.
Some of these lists are simply posting old news, are old themselves, or are plain wrong. Citric acid, a common ingredient in everything from store-bought condiments and homemade jam to Coke, was temporarily suspect, especially if it was manufactured in China (and how the hell would you determine that?). Now it’s on the safe list. Caramel coloring is theoretically safe for celiacs but bad news for some, myself included, which was why for a while I couldn’t drink Coke or eat many GF cereals—a few handfuls of GF Honey Nut Chex literally made me feel like I was high. Many people with gluten-related disorders have no problem with artificial colorings and dyes, but I was reminded of my own sensitivity—and the fact that farmed salmon can be dyed to look like Coho—when a fillet made me sick. For a while I couldn’t tolerate yogurt, which was frustrating, because I knew that after a month on antibiotics, the flora in my gut were in a state of nuclear winter. And I never regained my ability to eat processed meats, fake dairy creamer, and just about anything else that has a long list of chemicals in it (no real loss there). Sadly, the only way of knowing where one’s sensitivities lie for sure is to turn one’s body into a laboratory, eat fearfully for a time, and document what happens. My own personal solution was to stop reading the blogs and just focus on what was happening in my own gut.
Many eaters with gluten-related disorders opt to go a step further, though, attempting to eliminate all potential for cross-contamination, intolerance, and other bad encounters by going on strict diets. One of the most popular has been the “Paleo diet,” so called because it’s meant to mirror the eating practices of pre–Neolithic revolution eaters who roamed the plains and forests before wheat evolved from a plant called goat grass and was domesticated. If the food doesn’t walk, swim, fly, or sprout out of the ground, Paleo eaters don’t eat it. A true Paleo dieter, as opposed to a modified one, also does not eat any cultivated fruits and vegetables—such as Brussels sprouts, which only appeared around the 1600s—instead relying solely on those that can be foraged, like asparagus, onions, and berries. By following such a diet, Paleo dieters also seek to avoid eating commodity, strategically bred, and GMO crops, which many of those afflicted with a digestive disorder believe to be a source of their illness.
I would never try the Paleo diet. Even in the darkest days of that first winter, when I wanted so badly to recover and was making less progress than I’d hoped to, I was never tempted. For one thing, I love food too much to regress to the eating and cooking practices of a hunter-gatherer with a tricked-out kitchen. A pre-Neolithic diet means going without many things that are, in my view, cornerstones of good eating. Wine, for instance. Butter. Olive oil. Ice cream. Chocolate. Cheese. I had already surrendered enough—too much, in fact. Why voluntarily take on more restrictions? Eventually, I would be able to eat almost everything I had been eating only a few months prior. Telling myself this might have been a form of denial, but it turned out to be true.
Yet in my more panicked moments I often thought, Well, you won’t let this celiac shit define you.
That’s a funny thing to remember myself thinking, because I believe the nineteenth-century French writer and gastronome Jean Anthelme Brillat-Savarin’s famous saying: “Tell me what you eat, and I will tell you who you are.” He was definitely not the first to think it and probably not the first to write it, but Savarin got the credit. And his words are true, to a large degree, both because of the way food functions as nonverbal communication, and because of the links between what we eat and the stories we tell about ourselves: who we are, where we came from, how we’re connected to those who came before us and will be connected to those who come later, all because of what we set on the table. We do this constantly and unconsciously, as I began to see right after my diagnosis. It had been common, on those annual trips back to Maryland, to share a beer with my father, or to sit down for a light lunch of bread, fruit, and cheeses. I may have been paying too much attention, but there seemed to be a new unevenness at the table, a mild awkwardness, as we all wondered which items were ones we could all enjoy, and which were not. Eventually these feelings went away, as my mother greeted us with gluten-free pancakes in the morning, and Chianti, cheese, and GF crackers in the afternoon.
Savarin’s words also worked just as well, I realized, the other way around: Tell me what you do not eat, and I will tell you who you are.
Or: Tell me what you do not eat, and I will tell you who you are not.
The negatives in those formulations seemed far more powerful to me than the positives.
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Over the holidays, everyone we knew seemed to be having parties small and large at the rate of two or three a week. On New Year’s Eve, Bec
and I shared a light, gentle dinner of chicken and rice at home, and then we slowly walked to Sarah’s house. We arrived to find that she had moved her kitchen table into the living room to serve as a buffet, and had covered it with several kinds of cheese, fruits, nuts, olives, and sausages. There were different kinds of bread, crackers, and wafers, hot dips, cold salads, and, on the end, leftover Christmas cookies and fancy desserts. Immediately, instinctually, Sarah pointed out what was safe for me and what was not. She had thought ahead and made sure to have some things I liked: Fontina, kalamata olives, pistachios. The kindness and gentle inclusion that I experienced in her house on this first night would remain a constant feature of the meals I ate there. It would turn out to be the same at the houses of many other friends as we redefined, as a community, our eating habits when we were together.
Guests kept arriving, bringing food and drink with them, and setting it on the table. The room ballooned with energy and noise as midnight drew nearer. I wandered from conversation to conversation, wasted on half a glass of wine (anemic people are cheap dates) and trying to keep to myself the story of what had recently happened to me. I introduced myself to people I didn’t know so I wouldn’t have to rehash the details. Near midnight, I returned to the table and looked at it with dismay. Sarah’s careful order had come undone. Some of the people in the room were trashed by now, and so was the buffet. Bread and cracker crumbs mingled with the cheeses. Knives and serving forks and spoons had been used on several dishes. There were cookies near the olives, cake near the nuts. This was the first time I asked myself, in a social setting, What here is safe? Well, since it looked like raccoons had come through, theoretically nothing was safe. Hell with it, I thought, and I cut some cheese. Cory needed a beer, so I volunteered to get him one from the fridge. I chose a Great Lakes Edmund Fitzgerald Porter, the perfect match to a cold, snowy New Year’s Eve. I put a few ounces into a plastic wine cup and downed it.
