SO LONG, SQUARE FISH!
In my early twenties, I mentally mapped the Manhattan McDonald's locales that routinely charged for barbecue sauce, those that gifted liberally, and the Holy Grail - or the Golden Nugget, depending on your taste for prose - those that dispensed the sauce in giant pump-able vats, sauce cup stacks within reach for all, conveniently situated beside the DIY soda machine. I would discerningly dip my Filet-O-Fish in the sauce - every single bite, that is - in lieu of the tarter sauce that came standard on the sandwich. As my tastes evolved into my mid-twenties, I enjoyed combining the tarter and barbecue sauces. Disgusting? Only if you lack an adventurous spirit. For me, the tarter-Q blend was a true concert, swirled white and maroon goodness, the result of a surely enlightened palette. I believed the mixture to be my own original recipe. I was a born chef.
I delighted in dining habits akin to this daily, rarely feeling ill effects. Sugar in all forms routinely supplemented my fried fast food bonanzas. Of course, there was that one rare teenage summer when I brazenly consumed boxes of baked goods and Barq's vanilla cream soda at a humid KY art camp: after the inevitable vomiting ensued, I was awarded a chauffeur ride by the camp’s RA to the ER for IV fluids. Regardless of such a rare incident, my BMI consistently fell well within the “Normal Weight” range, and my family and friends frequently amused at my fixations. Generally speaking, I felt invincible.
By the time I enrolled at Cooper Union for undergraduate school, my daily routine entailed a rigorous schedule of studio art, a weekday regimen of classical ballet - an obvious outlet for stress relief - and an exclusively fast food diet. Nutritional facts? Who cares? I lived on the 16th floor of Cooper's dorm, dubbed the Wellness Floor. Of course, the dormitory building was adjacent to McDonald's, a mere three blocks from Taco Bell, and Ben and Jerry's was sandwiched in between. All was well, indeed. I had muscle tone, academic and artistic vigor, happiness and liberty. Pass the roll of SweeTarts, pass the Pixi Stix, the Fun Dip, the soda, the Magnolia cupcakes, the steak and the shake from Steak ’N Shake, the doughnuts and the Donut Holes... Fast and loose, carefree, foolhardy and reckless, I lived to make paintings in my studio and eat sugar, fried fish, and Burrito Supreme with abandon.
Fast forward to my late twenties: at Yale, rigorously working toward a second Master's degree, an MFA in Painting and Printmaking, my comfort foods gained force and consequence, expanding to include black beans, an actual whole food. Yes, I'd ventured beyond traditional fast food with weekly patronage to a large family chain Mexican food restaurant, where I discovered easy gratification in an unassuming side dish. Tumbling down that slippery slope, I readily bought ten cans of black beans at a nearby Walmart so I could indulge at home on the cheap. Only, I never did. Because that would have involved cooking, and I never cooked.
In the Yale years, beans weren't my only edible evolution: a new food routine started brewing in my art studio oddly enough, too. Vegetable oil. You see, when I wasn't painting in my studio, I spent day and night in the communal printshop. There, my junk food laden cells made strange bedfellows with the screen printing inks, etching inks, photo chemicals, acid baths, powdered rosin - toxic chemical galore, all traditionally mopped with solvents - an effluvium of alcohol and turpentine. To diminish the fumes and expense, we were advised to use vegetable oil - an eco friendly alternative to paint thinner. It was a brilliantly affordable solution. My colleagues and I bought gross supply of every Walmart vegetable oil we could find; we used it liberally in the printshop to clean equipment, copper and linoleum printing plates, and in our studios to clean glass palettes and paint brushes. With fistfuls of Crisco, I magically cleaned ink stains off a friend's coat with ease. Impressed? I routinely doused my hands and arms in the stuff, merrily washing away harmful chemicals and paint from my youthful skin.
In the last few months before graduation, I developed an anxious feeling, and an itchy dime-size spot of dry skin just below my eyebrow. A few weeks later, another dime-size spot appeared beneath my other eyebrow. I mentioned it to my doctor during an unrelated appointment and he quickly replied, “that’s just from stress- here’s a cream you can use.” The cream worked instantly, and just as fast as my eyebrows seemed cured, I developed the same itchy dry skin under my armpits - both armpits - covering them entirely. The itch was unlike any itch I’d experienced. A fiery merciless, hair-raising, and unrelentingly voracious downright cruel itch. I couldn’t focus, I couldn’t work. I couldn’t sleep, I couldn’t function. Could stress really cause this burning rash? The rash certainly caused stress.
Chickens and eggs. Itchy quarter-sized spots surfaced on my torso, then on my calves, then covered both eyelids entirely. Some days my eyelids nearly swelled shut. Last but not least - in the span of 6 months since the first eyebrow itch - my hands, neck and mouth were stricken, and by far the worst of all. I was unrecognizable to old friends, and to new acquaintances, my chronic rash was normal. At times red, angry, inflamed, itchy, blistered, peeling, flaking, bleeding, the disfiguring rash consumed me. If this was caused by stress, then I seriously needed to destress. I stopped by Yale's Mental Health Services: for the first time in my life, I was uncertain of my mental wellbeing. In the waiting room I glanced at an evaluation questionnaire: “Do you ever think of harming yourself or others?” Hell yes! I wanted to rip off my skin that moment, crawl outside my flayed body and jump into the fridgid large sea, and never reemerge. I left the office that instant and never returned. I surely had my wits about me.
After that, I graduated. My primary care physician referred me to the Dermatology department. They identified my condition as eczema, which they explained is a symptom of an allergic reaction - never stress related, and thus they referred me to the head of the Allergy department at Yale. He gave me more of that cream for my eyelids, mouth and neck, and a different cream for the rest of my body. He explained that both creams are steroids with terrible side effects, and that the cream for my body would thin my skin irreversibly, therefore it was not suitable for the delicate skin of the face and neck. I asked him about the "black box warning" on the cream I’d been using on my face and neck, because of an FDA warning that appeared on the prescription drug’s label and is "designed to call attention to serious or life-threatening risks.” He told me that the cream is known to cause cancer, but then he attempted to ease my nerves by explaining that even newborn babies with severe eczema are prescribed this cream, and sometimes slathered in it from head to toe. He also prescribed two oral antihistamines. I took it all - the steroids, the pills - and I found some relief, but I instantly relapsed if skipping even one dose, and I suffered the minor, yet accumulating side effects of each medication, day and night (burning at the application site, headaches, sun sensitivity, sore throat, drowsiness).
My allergist drew blood to test for environmental and food allergies because my rash was so severe at times that it seemed too risky to do a skin prick test, in which minuscule amounts of potential allergens penetrate the skin. He prescribed an epipen for me to carry around just in case my next reaction became anaphylactic. While desperate for answers, the test results were uneventful at best. I tested positive for allergies to dogs, cats, horses and a few tree pollens, all of which I had already known and eliminated as causes for the current affliction. I tested negative for food allergies. The doc raised an eyebrow at the results for black beans, which he said technically didn’t fall into the range of allergic response, but didn't result in a “nothing” reaction. He explained that food allergy testing typically results in false positives and negatives, and that perhaps I could have a food allergy that wasn't detecting in my blood work. His best advice at that time was that I should consider getting a dog. Yep, no lie. He explained something complicated and too scientific for my right brain to process, something about how Immunoglobin E (IgE) antibodies, which are produced by the body causing an allergic reaction, can be potentially manipulated by exposure. Something akin to the idea of allergy shots I suppose. He elaborated, saying that my allergy to dogs was minor enough that - maybe - I could bear life with a pet, and that the increased exposure to that particular allergen might - maybe - tip the balance within my immune system enough to improve the severe reaction I'd been suffering as a response to my mystery allergen. I stared at him rashly, swollen lips agape, never having owned a pet in my life, imagining my husband's face when I haul a slobbering, shedding labrador into our studio apartment under 'doctor's orders', asthmatic wheeze of nervous laughter as I inhale a cloud of dander. I wondered... was this permission to get a few cats too? tie a horse to the apartment's patio rail and call it a wellness center?
I didn't get a dog.
As an alternate glimmer of hope, the allergist suggested I get tested for chemical allergens by a dermatologist, in order to rule out other possible causes, and he referred me straight to the head of the Dermatology department at Yale. The appointment was a month out, and in the meantime the allergist recommended I stop working with harsh chemicals. I stopped painting altogether for those weeks - the longest and most depressing break I'd ever taken from my work.
The dermatologist drew an ink grid on my back, and inside each square he applied a “patch” or bandage swatch containing a concentration of a unique potential chemical allergen. Formaldehyde found in clothing, cosmetics and household products. Adhesives like epoxy resin. Metals like nickel and cobalt. A Rubber Antioxidant found in leather shoes, oils and greases. Parabens. Fragrances. Preservatives... As instructed, I wore the patches for 48 hours without sun exposure and without showering. Miserable from the chronic itching pain, I became suspicious, fearful and angry at nearly everything I touched. My toothpaste. My makeup. My furniture. The rubber soles of my shoes. The paint and solvents I’d loved to work with all my life. I waited patiently for the skin on my back to explode. Then... nothing. No reaction on my back; the test was negative.
The head allergist told me he’d only ever seen one other case of eczema this severe and mysterious, and that he told that patient to move - to relocate to a new environment altogether in hopes of running away from the allergen. He suggested I move, too.
At a later appointment, a student intern in the Dermatology office greeted me before the doctor came in the room, and he remarked on the acuteness of the rash around my swollen and bleeding lips. He said casually, "you know, usually when the rash affects your mouth it means the allergen is a food- it starts around the mouth, then the lips swell, then the tongue, then the throat”. It was my first and only real clue. I asked the head Dermatologist when he arrived, and he agreed, suggesting I try an elimination diet, eating a restricted diet for a few weeks, then carefully reintroducing suspect foods individually to note any reaction.
At nearly the same time, my sister in law recommended that I read Dr. Alejandro Junger's book, Clean. Without any fundamental nutritional knowledge, I followed Dr. Junger's program to a tee. I committed to cutting out foods known as the top allergens in our country: dairy, eggs, soy, wheat, shellfish, peanut. I went off all the medications, rash in full force, making fully visible my body's natural reactions without interference or masking. I sought advice from my doctor, who advised me to strictly stick to the program for a full 21 days, as it can take that long for allergens to completely exit the body. For a junk food addict, this was absolute torture. These allergens are found in EVERYTHING - in all processed foods - in nearly all canned or boxed items that have labels, in all menu items at restaurants. Starved and clueless, I had a mile long list of what not to eat, and no idea what to eat. Relegated to a foreign planet known as the produce aisle, I found myself alienated and watched YouTube videos to prepare for grocery shopping. I was forced to learn things like: how to select a ripe melon, how to chop an onion.
While off medication my rash resurfaced with a vengeance, compounding withdrawals from my beloved junk food - migraines, terrible mood swings, and insane cravings. Most shocking of all, my menstrual cycle went haywire for the first time in my life. I started a period weeks sooner than anticipated, a surprise which Dr. Junger's Clean Team support staff readily explained is a symptom of detoxification, menstruation as one of the body's most natural and effective ways of flushing toxins from the system. But, then it happened, quietly and without fanfare. The chronic rash that I'd worn day and night all over my body for the last year, gradually disappeared. Astonishingly, by day 20 it was nearly gone. Miraculous. The culprit was certainly food, and I embarked on a tediously frustrating, but incredibly rewarding journey for the next year to reintroduce foods one by one to discover, and finally identify my offender: black beans and vegetable oil.
In the line up of common allergens, I identified, charged and sentenced legumes to eternity in the depths of hell, entirely banishing them from my diet. I reacted to black beans, snap peas, snow peas, mung bean sprouts, peanuts, and soy bean. Even jicama. Yes, jicama as it turns out is in the bean family. Merriam Webster's dictionary defines legumes as “a type of plant (such as a pea or a bean plant) with seeds that grow in long cases (called pods); also : these seeds eaten as food”. No more, not for me.
After I first identified my allergens, I made a gallant attempt to continue to eat somewhat 'normally'. I ordered my burrito at Taco Bell but carefully read the ingredient label on the mild sauce packet and mustered the willpower to skip the soy laden condiment. I didn't realize at that point that while there wasn't an ingredient label on my burrito wrapper, it didn't guarantee there wasn't soy in the ground meat, the processed cheese, the tortilla, and the cooking spray. In fact, there was soy in every bit of every bite, and I paid the price. I didn't know at the time, but that delicious mall food-court burrito was my last Taco Bell meal forever and ever. I can recall a harrowing late night drive following an enjoyable evening of exhibition openings in NYC back to our apartment two hours north, during which hunger pangs struck as the Golden Arches rose up, a glowing mirage over the highway horizon. My husband ate a square fish, and I, starved and delirious from the heavenly sea of salty perfume that wafted through the air, I ordered oatmeal. Cause I have food allergies, and I had to eat something safe. It was the worst McDonald's meal I ever tasted, and I didn't know it at the time, but it was my last McDonald's meal, forever and ever. The following morning I woke to an inflamed rash on my hands and neck, and swollen eyes and lips. Incredulous, I looked up the ingredients for oatmeal on the McDonald's website:
Ingredients: Water, Whole Grain Rolled Oats, Brown Sugar, Modified Food Starch, Salt, Natural Flavor (Plant Source), Barley Malt Extract, Caramel Color.
As it turns out, both Modified Food Starch and Natural Flavor are often derived from soy.
Back at the mall food court, I grudgingly passed over my staples and approached the Little Tokyo counter to give Japanese fare a try. Stepping foot on the far end of the food court for the first time, I felt well-traveled, worldly even, and a swell of confidence in my smart choice brought a smile to my face as I proudly ordered a couple of California rolls. Hold the soy sauce! I'll eat it PLAIN. Just the four ingredients- cucumber, crab meat, white rice, and avocado for me, please.
Two hours post-meal, and in the final minutes of watching Scream 4 in the mall theater, I felt the itching start while sitting in the dark. When it became unbearable and I bolted for the parking lot, I frantically searched for answers, googling 'California roll and soy' on my phone. What had I done to myself this time? I quickly learned it was the crab meat- or lack thereof. In the US rolls are nearly always made using the cheaper imitation crab meat instead of the real deal, and that imitation meat is made from an amalgamation of non crab meats and eggs and colorings and flavorings and you guessed it- soy.
Living with a legume allergy, overtime I found that it's easy enough to spot peas or beans sitting on your plate, or floating in a bowl of soup, and avoid them with a polite 'no thanks.' But soy on the other hand is the deceiver, the shape shifter, the imposter, and the cheat. I learned the hard way that peanut oil, and soy (and its derivatives) sneak like assassins - invisible, persistent killers. Omnipresent. Nearly all restaurants cook food in peanut oil, soybean oil, 'vegetable oil' (a vague, misleading title for oils derived from vegetables - typically soybeans), and ‘olive oil’ (a well-meaning restaurant chef’s term for less expensive blended oil: 80% soybean oil, 20% true olive oil).
From a 2015 Time magazine article: "The second largest U.S. crop after corn, GM soy is used primarily in animal feed and in soybean oil—which is widely used for processed foods and in restaurant chains. In fact, soybean oil accounts for 61% of American’s vegetable-oil consumption. It's also frequently used to make the emulsifier called soy lecithin, which is present in a lot of processed foods, including dark chocolate bars and candy."
The American College of Allergy, Asthma and Immunology’s website says "Most individuals allergic to soy can safely consume highly refined soybean oil. Ask your allergist about avoiding this ingredient”. So I asked mine, because when I had one sip of Diet Coke, which contains flavoring derived from soy, I had a severe reaction that lasted a full month, and when I had a bite of chocolate bar preserved with soy lecithin I endured the same reaction, and when I encountered soybean oil in just one meal my body would freak out for as long as six months before fully recovering. My allergist explained that while it’s true that most soy allergic people can tolerate the oil because the protein has been removed through processing, some severely allergic people are sensitive enough to react to the trace amounts still present. Lucky me.
Here is one of the better lists of what to look for on labels and avoid if you are soy allergic. I share it here because I only wish I'd found such a comprehensive list in the beginning of my journey, to save countless mistakes, confusion and scares:
Statements on food labels
"may contain soy"
"produced on shared equipment with soy"
"produced in a facility that also processes soy"
Other Names for Soy
Soy is a common ingredient in many Asian cuisines, and may be identified by its name in other languages. Some of the names for soy are:
Edamame (fresh soybeans)
Miso (fermented soybean paste)
Soybean (curds, granules)
Tofu (dofu, kori-dofu)
Ingredients on a label are not always easy to recognize as soy. These ingredients are created from soy that has been processed in some way:
Hydrolyzed soy protein (HSP)
Mono- and diglycerides
MSG (monosodium glutamate)
Soy (albumin, cheese, fiber, grits, milk, nuts, sprouts, yogurt, ice cream, pasta)
Soy protein (concentrate, hydrolyzed, isolate)
Textured vegetable protein (TVP)
Possible Soy Ingredients
These ingredients may or may not contain soy. Call the manufacturer of the product to find out the source of the ingredient.
Hydrolyzed plant protein (HPP) or hydrolyzed vegetable protein (HVP)
Vegetable gum, starch, shortening, or oil
Foods That Likely Contain Soy
These foods often contain soy. You should be extra cautious about eating these foods if you are unable to get a complete ingredient list.
Asian cuisine (Korean, Japanese, Thai, Chinese, etc.)
Baked goods and baking mixes
Chicken (raw or cooked) that is processed with chicken broth
Energy bars, nutrition bars
Imitation dairy foods, such as soy milks, vegan cheese, or vegan ice cream
Meat products with fillers, for example, burgers or sausages
Nutrition supplements (vitamins)
Peanut butter and peanut butter substitutes
Sauces, gravies, and soups
Vegetarian meat substitutes: veggie burgers, imitation chicken patties, imitation lunch meats, imitation bacon bits, etc.
List copied from verywell.com, Resources:
The Food Allergy and Anaphylaxis Network: www.foodallergy.org
Sicherer S. Food Allergies: A Complete Guide to Eating When Your Life Depends on It
Joneja JV. The Health Professional's Guide to Food Allergies and Intolerances
In addition to serving as a thickener and preservative in foods, soy and its derivatives are widely used in household products. Over the years I’ve reacted to hand soap, dish soap, lipstick, lip gloss, medicated lip balm, lotions, inks, glues, and even to my disposable razor, thanks to Vitamin E in the lubricating strip (derived from soy). I’m now make-up free and I use fewer, more natural cleaning products. I enjoy financial savings and freedom from so many products, chemicals, and fragrances in my home and on my body. I’ve learned that I’m safest and feeling my best when preparing my own foods from scratch using all whole food ingredients; otherwise, I routinely have to decode countless ingredients labels at every grocery trip, and some of my worst reactions were from misreading a label of a product I bought and gave to myself.
In searching for legume and soy free recipes online I discovered that Paleo and Raw Vegan diets fit the bill. Paleo practitioners avoid legumes to avoid potential digestive issues, among other reasons, and raw vegans generally skip most types of legumes because - well, you just can’t eat many types of legumes unless they’re cooked. I’ve reaped many health benefits along the way during the last 6 years - significantly increased energy, no more migraines during my menstrual cycle (I used to endure them monthly), significantly improved skin health, and incredibly strengthened immunity. My husband and our young daughter have greatly benefited from the diet as well.
I hope that sharing this story might help even one person who is searching for answers or inspiration. Slowly overtime, with lots of practice and experimentation, I’ve fallen in love with whole foods. I've adopted a mostly vegan, mostly raw diet, devoid of processed sugar, and I love to get busy making in both my studio and my kitchen. As I continue my journey, I hope you’ll join me for a celebration of food, art, and joy. So long, square fish!