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The Heavy 'Backpack' You Carry When You Have Celiac Disease

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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. 

Originally published: September 6, 2016
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