Ilana Marcus

@ilana-marcus | contributor
Ilana Marcus is a writer and software developer. She is a regular contributor to the Gluten Free New England magazine and enjoys writing about travel, health, and women in technology. To read more of her writing, visit Writing by Ilana Marcus. 
Ilana Marcus

Deciding If I Should Add Gluten Back Into My Diet

Even 30 minutes before the town hall meeting was scheduled to begin, every seat was filled with anxious citizens. The community members spoke in low tones, every so often stealing glances at neighbors. They had been living in relative peace and harmony for 30 years, but changes were underfoot, and an air of uncertainty swept through the packed room. Finally the tapping of the gavel could be heard and the whispering died down. Soul stood in her traditional meeting robes and spoke. “Good evening, fellow citizens. I will read a quick announcement before we proceed to the main item on our agenda. I want to remind you that in honor of the upcoming holiday season, we are returning to the standard exercise regimen.” Groans and mutters escaped the audience. Soul continued, “Muscles, expect soreness. Please coordinate with Bladder and Kidneys to agree upon a mutually acceptable rehydration protocol.” Bicep winked at Bladder, who rolled her eyes and blushed. Soul added, “Brain will be scheduling increases in vitamin intake as well as sleep allocation, so take advantage of the recovery time while you can!” Stomach and Waistline sighed. Thanksgiving was right around the corner. The annual overeating was always followed by bloating and erratic early morning consumption of turkey and pumpkin pie. “And now,” said Soul, “We will carry on with the main item on today’s agenda, which I trust will lead to many fascinating, passionate, and civil deliberations.” She rustled some papers, lips pursed. “Today we shall be discussing the matter of inviting Gluten back into the community, the ordinance introduced by Mouth and Desire. Please make your opening arguments.” Mouth and Desire stepped forward, Desire speaking first.  “Fellow citizens, we have decided that enough is enough. It has been six years of ignoring the scent of baking bread and cinnamon rolls, of being forced to consume expensive fake cookies and the seldom french fry. We say, we’re sick of being told what’s what. We want things to go back to the way they were!” Mouth spoke up,  “And yeah, this food is disgusting. It’s the worst. It’s unbelievable.” Desire finished, “So that’s what we want to say. We want to bring Gluten back!” Soul took the podium and said, “The opponents of the ordinance will now argue against the proposal. If you please, Stomach and Duodenum.” Stomach led Duodenum to the podium, who stepped up and began to make her case. “I have lived here since the community was established but I was sick for so long that many of you have never met me. Since the perpetrator Gluten was banished, my villi have been growing back,” and she shook her shiny tresses, which were coming in nicely. “I’m sure many of you have been feeling better also. Teeth? Skin?” Skin nodded, and Teeth shouted out, “Enamel and I are finally getting married! No one can keep us apart!” Duodenum smiled feebly before continuing. “Gluten is toxic to our community. He makes all kinds of promises about how life will be better if he comes back, but I say no. My life will not be better, and just because no one sees me doesn’t mean I’m not important!” Colon barked, “Hear, hear!” Desire sneered, and growled into her microphone, “Where’s the proof? Blood has been sitting for examinations every three months and passing with flying colors!” Mouth pitched in, “Yeah, those tests are rigged. We’ve been fine all along!” At this point Duodenum collapsed into a chair and Stomach grabbed her microphone. “We most certainly have not been fine all along. Blood’s first screening test was off the charts. What about the hours of childhood this community spent on the toilet? And even last week, after a cross-contaminated meal, I was cramping all through the night!” Desire snorted. “Oh Stomach, you’re so sensitive. You don’t even know if it was contaminated.” And then she turned to the crowd. “Don’t you remember the early days, when we could go anywhere and not have to pack a bag of crumbly bread and bruised apples to take along just in case?” Arms and Back cheered. “Anxiety, don’t you remember how carefree life used to be?” Anxiety frowned. “I am working a lot of overtime these days. Paperwork went through the roof after Gluten was banished.” Stomach forced the mic away from Desire. “You are living in the past! This is a changed world, and simply pretending that Gluten is harmless does not make him so!” The community members leaned in towards each other again, deliberating. Stomach, Duodenum, Skin, Teeth, and Enamel stared in disbelief across the aisle, their neighbors suddenly strangers. Mouth and Desire were trying to convince the undecided, including Liver, Spinal Cord, and Toenails to vote Yes on Gluten. Waistline and Anxiety whispered back and forth in a frantic exchange of worst case scenarios. “The gluten free replacement foods are so caloric!” “Although if Gluten is really dangerous, we might gain weight anyway.” “But at least we won’t be hysterical all the time about eating something by mistake, Cortisol and Adrenaline haven’t left me alone for six years straight, it’s exhausting!” Off in a corner, Soul and Brain observed the hubbub. Soul turned to Brain and said, “This issue comes up somewhat regularly, wouldn’t you say?” Brain smiled. “But of course it does. And I have a theory as to why.” “You do?” Brain beckoned to Eyes, who joined them in the corner. “Eyes, are you seeing what I’m seeing?” Eyes looked off into the distance for a moment, and then focused back on them, nodding slowly. Soul was perplexed. “What? What is it?” In unison, Brain and Eyes said, “Bakery Window Syndrome.” Soul sputtered, “Bakery what?” Eyes said, “The community is currently inhabiting terrain in the immediate vicinity of a bakery.” The din in the room was rising. Soul knew that time was running out. Anxiety was pacing up and down the hall ranting about chronic inflammation. Desire had started a rally, and Duodenum was weeping alone on a bench. In a moment of inspiration, Soul grabbed the microphone. “Paging Legs! Legs, report to the podium immediately!” Legs appeared in a jiffy. “Ma’am yes ma’am, Legs reporting for duty ma’am!” He stood at attention. “Legs, run like your life depends on it!” “Yes ma’am!” Legs dashed out of the room, and Soul, Brain, and Eyes waited with bated breath. At first it seemed they’d missed their chance, but all at once, everything shifted. Desire’s rally dissipated when Nose talked her into a walk by the flower shop. Anxiety slipped into a chair and fell asleep. Duodenum lay her head on Stomach’s shoulder, who stroked her shiny mane. Brain turned to Soul and said, “Well played, fine madam.” Soul sighed, weary. “Until next time, ” she said. “Indeed,” answered Brain, and they left the hall together, arm in arm. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Natalie Bulatova

Ilana Marcus

How Celiac Disease Is Like Carrying a Backpack

Celiac disease is like carrying around a huge, unwieldy hiking pack on a crowded city street. You can do it, and with some practice and skilled maneuvering you can even make it look graceful, but you never get so good at the contortions that you are glad to be hauling an overstuffed bag. You yearn to set down the monstrosity and meander free and weightless. Unfortunately, that moment doesn’t come as easily as flinging the disease off your back. The celiac pack cannot be unbuckled, unzipped or unsnapped, for better or for worse. When you were first diagnosed, maybe you didn’t mind the pack so much. Maybe you were relieved that you hadn’t been dealt the cancer pack or the Crohn’s pack instead. Even so, the celiac pack doesn’t reveal its weight that first day. It digs harder into your shoulders when you learn that the smallest crumb of gluten-containing wheat, barley, rye, oats or spelt will cause your body to attack its own organs, wearing down the lining of your intestines until you can’t absorb nutrients anymore. You picture your digestive tract as a grand Persian rug in danger of going threadbare, so you frantically sterilize your kitchen. The celiac pack is heavy, but you also see that its contents are intriguing. Foods you’ve never tried before, experiences you’ve never had before. A stack of papers from the nutritionist with names of new grains you should be eating. Amaranth, for example, which sounds like an ancient food exhibited at the science museum, where fossilized seeds are cradled in shards of excavated pottery. Tucked away in the pack are your Imodium, Miralax, Metamucil and Vitamin D to keep your digestive tract running on task. You can no longer count the number of times you’ve needed to extract a heavy bottle of stomach medicine powder in airport security and explain it to a bewildered officer. Once, they were so suspicious that they missed the large bottle of water in your bag, which is an actual liquid. In the left side pocket is a magnifying glass, optically adjusted for reading ingredients on labels. The premium celiac pack comes with a megaphone. This is especially useful to alleviate stress on your vocal cords while trying to get the attention of a server at a fast food joint or to alert the person preparing your salad to hold up right there, Flour Fingers, and change those gloves! In the bottom of the pack is a journal. Here you recall the time you asked the owner of a restaurant for the ingredients in a certain barbecue marinade and he mentioned chili sauce and Worcestershire sauce, then he brought out the bottles so you could read the ingredients. The chili sauce included anonymous starch and an unnamed vinegar, so you called your sister who also has celiac disease to estimate the likelihood of the vinegar being malt vinegar and the starch being wheat starch, and in the end, you ordered something else just to be safe. But it sure was nice of him to take out those bottles for you. More memories, the only two times you knew you had gluten since diagnosis, when you ate a sour gummy candy without checking the ingredients for wheat flour until after you’d already swallowed it, and the time you ate a few strands of pasta that had a particularly robust texture and then realized you’d cooked the wrong box of spaghetti. Sitting next to the toilet trying to throw up while simultaneously Googling to see whether puking mistake-gluten is actually what you’re supposed to do. The meals out with your new coworkers/friends/teammates, when your order was rejected because the seasoning might have contained gluten, then your replacement dish finally arrived, smaller, blander and somehow more expensive than everyone else’s. Sweet memories jump off the page, like the time you ordered ice cream and without even having to ask, the server scooped from a brand new tub in case the open one was contaminated with cone crumbs. When you were invited to a dinner party and the host reviewed the menu with you in advance so you wouldn’t be scared of getting sick. A Venezuelan restaurant where every dish is gluten-free. How your mom has stayed up until 3 a.m. so many times baking new bread recipes for you to try. You carry these things from place to place. Every so often, you come across oases of safe, euphoric eating, which almost feel like the years of your life BCP, Before Celiac Pack. These are the fleeting opportunities to eat with abandon, to fully participate in a communal experience, to put the pack in a corner and be present. To enjoy life in the unencumbered way you imagine people without chronic illness do. Even though you know, in the back of your mind, that everyone has their own pack to bear.