Eight years ago, just before our wedding, my wife was certain I was dying. It seemed every week I was getting skinnier and skinnier — foods that I was once able to eat comfortably, now made me feel sick and fuzzyheaded. I felt pain stabbing through my belly and sides. Despite the sudden onset of these baffling health issues, my would-be wife loved me, and could not imagine a future without me in it, and she married me anyway. I still remember walking down the aisle on aching feet feeling like a man three times my age, recoiling from a hard embrace at the reception, avoiding the celebratory wedding cake like it was poison. I couldn’t even look at myself in the mirror.
As someone who has been living with celiac disease for the last ten years or so, I have known deprivation. But I could not understand why other foods not containing gluten were also causing me to be sick. Potatoes, chicken, corn, rice, peppers, you name it–virtually everything I ate caused my throat to tickle, my tongue to swell and my brain to blur. Allergists told me I was not allergic to the foods I claimed I could not eat. A colonoscopy and endoscopy turned up nothing. My weight loss indicated the possibility of type 1 diabetes, an autoimmune disorder like celiac disease, but a blood test showed my blood sugar levels were normal. Doctors told me my problems were related to stress. Some people close to me felt that my problems were just in my head. By the time I weighed125 pounds, my doctor privately told my wife that if I lost any more weight, he would have to check me into a hospital.
And that was around the time when things started to turn around — slowly, ever so slowly. My doctor discovered that a combination of living in a moldy Brooklyn apartment and not following a strict gluten-free diet caused my digestive tract to be invaded by candida albicans — an aggressive sugar-eating yeast that had been colonizing in my intestines. Under normal circumstances, the majority of the human population lives with candida albicans in their digestive systems without any problems. In my case, however, the gluten had damaged and flattened the villi, tiny, hair-like projections from the intestinal wall that help with absorption and digestion, and the candida, fueled by the toxic mold, had free range to set up camp unimpeded. The roots of the candida were starting to break through the walls of my intestines, and microscopic bits of food were entering my bloodstream. I hate to imagine what might have happened if my doctor had not figured out what was making me sick and put me on an aggressive treatment plan. I was ordered to cut out all sugar, alcohol, fruit, peanut butter– which is full of molds — and all complex carbohydrates and told to eat protein and vegetables with low sugar content — not unlike a diabetic’s diet. I was told to take digestive enzymes and betain HCl with pepsin to assist with digestion. I was also prescribed a medication that, when it was working, struck me down as if I had been hit with a bad case of the flu. The key with the medication was to move slowly so as not to overwhelm my compromised system. It took several years until I started to gain the weight back in a significant manner, and many foods that I could not eat came back to me like long-lost friends. However, not everything was reversible, and it was clear that I would never be able to eat gluten, soy or any dairy products for the rest of my life.
Human beings are eminently adaptable creatures, and I have found ways not only to survive, but to thrive and to enjoy food again in a way that I never thought possible. My late mother who suffered from the same disease as me once told me that I was lucky to be celiac since I would be forced to eat healthier food than I otherwise would have eaten. My diabetic friends have said the same thing about their diets. But there is nothing lucky about having an autoimmune disorder, and I struggled to come to grips with the new reality in my life.
In time I was cleared to eat fruit and starches again, and I learned the hard way that many foods that claim to be gluten-free or soy free or dairy free are often not in fact free of those ingredients. I learned about cross-contamination and dedicated factories, and which products I could trust and which ones I could not trust.
When dining out I have to avoid all chain restaurants since the majority of food is usually pre-prepared in an off-site location. To make things easier with other restaurants, I had a card made up listing all the things I could not eat, laying out all the sources of hidden gluten and soy and dairy. At first, I felt embarrassed, advertising how broken I was to the world, but in time I realized that more and more people have to be careful with the food they put into their bodies. It seems most good restaurants now have a gluten-free menu and chefs are willing to adapt other menu items to suit people’s dietary needs. There is always a risk, of course, eating in a restaurant in which somebody that you do not know is preparing food for you, and I have had several painful incidences [though, cross my fingers, not in a long time]. However, I have found four or five local restaurants that have eased my concerns and cater to my needs, and I don’t feel restricted at all as I enjoy great barbecued ribs, paella, Cambodian cuisine and Thai food – all within a ten minute walk from my house. I even figured out how to eat safely when I was far from home, finding the nearest Chinese restaurant and ordering steamed beef/chicken/shrimp with steamed broccoli and steamed rice. It only takes a little bit of salt and pepper, some steamed scallions and ginger and the meal is bursting with flavor.
In recent years, more and more specialized food has become available which clearly advertises that none of the major allergens/irritants are present. But seven or eight years back, I was forced to innovate and try new things that I never would have considered eating — boiled taro root, cassava, kale, collard greens, amaranth, millet, quinoa, garbanzo flour, flaxseed, and virtually any sort of meat, including once, kangaroo. In a life without sugar, I discovered stevia and agave syrup, rose water, hemp milk, coconut milk, and the joys of Vietnamese cinnamon. I came up with my own recipes, baking lopsided muffins out of chestnut flour and pumpkin, sweetened with stevia and a touch of applesauce.
Now I can buy yeast free, gluten-free bread at my local Whole Foods, quinoa cookies containing almost no sugar, coconut milk yogurt and a non-soy soy sauce made of coconut sap. And yes, if you’re curious, I’ve gained back all the weight and then some, and recently my wife’s friend noticed that I had a slight belly. I didn’t mind. Her comment proved to me that I had come all the way back to the land of plenty.
Jon Papernick is the author of The Ascent of Eli Israel; Who by Fire, Who by Blood, and recently published short story collection There Is No Other. He teaches fiction writing at Emerson College and lives outside Boston with his wife and two sons.