Celiac.com 08/27/2021 - Like most celiacs, my social life was eclipsed by strict new rules following diagnosis. At the age of 22, I could be seen, as often as not, with one hand over a pint glass and the other in a communal snack bowl. Shortly after my 23rd birthday, however, I was informed by my specialist that I had celiac disease. This meant a lifelong diet without wheat, rye, or barley. “So, like, you mean no beer, bread, or pasta, right doc?” It seemed like a small freedom to sacrifice for protection from the intense discomfort I’d been experiencing. It wasn’t until I visited a dietitian that my life was violently overtaken by one word: cross-contamination. This new despot threatened my public and private life.
For the following year, no door handle, remote control, or receipt was touched without a slight rise of panic. I understand that gluten cannot be absorbed through the skin but once something is on your hands, it’s not too long until it has a chance to be ingested, be it through a brush of your nose, grabbing a snack on-the-go, or, as is a nervous behavior of mine, picking at dry bits of skin on my lips (disgusting, I know).
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The kitchen I shared with my non-celiac roommate soon became a center of stress and anxiety. Each time I entered, I visualized those mischievous little protein molecules crawling on everything. Preparing any meal involved washing my hands about five times: 1) Opened the fridge to get out vegetables, contaminated fridge door, must wash hands; 2) opened the drawer to get out knife to cut vegetables, contaminated drawer handle, must wash hands; etc. My knuckles became as red and cracked as a sailor’s.
Nearly every day I envisioned a new way in which my food might become contaminated. This added mile seemed to push recovery and good health further away. The check-out counter at the grocery store; assignments from my students—zealous consumers of powder-flavored, prepackaged snacks; and who’s to say that some sandwich-loving employee at the coffee plant would always wash her or his hands after each bagel break?
I even had anxiety attacks when my most conscientious friends and relatives cooked for me. In retrospect, I’m grateful amicable relations survived my leery stares over the shoulders of unfortunate hosts. My own kitchen was also turned into a tightly-controlled operation, where I made my roommate and houseguests quake at the mere thought of straying from the line. The anxiety about people touching my food and dishes with their contaminated hands caused me to bark rules at house guests before they’d so much as taken off their shoes.
My party-girl personality was eradicated by the new prudish and intolerant ideology. For one thing, I could no longer consume in ignorance. I had to know exactly what I was putting in my body (“What’s in this shot?” “Uh….I dunno…vodka and some other stuff” “Sounds good.”). My inability to be laid back about alcohol crossed over into an inability to be laid back and fun-loving in general. A watchful eye was forever darkening my thoughts. I’d order a gin and soda, thinking it was safe, and my spirit would become crushed like the lime the bartender, hands covered in beer suds, squeezed onto the rim of the glass. I began to favour staying within the regulated confines of my own home.
Whispers of “neurotic,” “controlling,” and “lunatic” threatened a rebellion against my methods of control. Although my particular neurosis has yet to be categorized and defined, the obvious parallel is germaphobia. I did some elementary research into this disorder and gained a little insight through the help of my good friend, Wikipedia, ( It is by no means definitive but a great starting point). It lists the following characteristics of germaphobes:
- Obsessive washing, such as repeated hand washing.
- Avoidance of activities that involve uncleanliness.
- Makes well-known their unwillingness to share food, utensils, and other personal items, even when unasked.
Any of this sound familiar? I had to admit it. I was gluten-phobic. There are still times I’d like to crawl inside a gluten-proof bubble. The benefits of being isolated from gluten seem to far outweigh the benefits of being integrated into society. As yet, however, there is no such option for us Howard Hughes’ of the celiac world.
The unfortunate thing for celiacs is that, to a certain extent, we have to be gluten-phobic. Unlike ingesting germs, which may or may not make a person ill, ingesting gluten will almost definitely cause us harm. Furthermore, many people argue that exposure to common germs and viruses is necessary to build a strong immune system, whereas the prevalent medical argument of today is that celiacs should not try to build up even a small amount of gluten tolerance.
Yet, if we are to continue to live in a gluten-consuming society, we must not let fear dictate our lives. Family, friends, co-workers, and roommates must adapt to the rules we have no choice about. Some individuals are frustratingly slow to catch on. A few are inevitably condemned to exile. Fortunately, there are others who can adapt to our way of life here in celiac country. My problem was that I needed to trust these allies, to help them learn our customs by being positive, patient, and encouraging rather than through paranoia.
My new roommate and I are hosting a New Year’s party. We are hoping to squeeze at least fifty inebriated friends into our cozy apartment. When the subject of snacks was discussed with our friends, people began offering their cooking services. One woman was titillated at the prospect of making her favorite guilty-pleasure snack: cheese whiz on toast with bacon bits. I’d already begun fretting over errant drippings of beer foam. Now, I pictured jovial, uninhibited, crumb-covered hands searching through cupboards, contaminating dishes and food products, leaving gluten-y traces on bottles of lotion and lipstick in the bathroom. I became so filled with worry that I eventually broached the subject with my roommate.
It was difficult to voice my concerns, because I hate feeling like an inflexible militia-leader. For the sake of my roommate, family, and friends, I don’t want to implement a regime of fear-induced adherence to strict anti-gluten measures. I want my home to feel relaxed rather than tense. A compromise was reached: our invitations read, “B.Y.O.B. Snacks provided.” Yes, more than one sudsy bottle will likely overflow. I console myself with the fact that, just as black must live with white, Christian with Hindu with Buddhist with Muslim with Jew, heterosexual with homosexual, so must we gluten-intolerant live side by side with beer-guzzling bread eaters. When I think of my wonderful friends and relatives, I wouldn’t have it any other way.
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