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Celiac.com 10/06/2005 - You’ve all heard the joke proclaiming that “denial is not a river in Egypt.” No, it’s not. What it is, though, is a very real issue for many, if not most people who have been diagnosed with celiac disease or gluten sensitivity. There are a couple of types of denial—the first type affects us—while the other type affects those around us. When We’re in Denial Many people who are diagnosed—or when their kids are—go through some type of denial. It usually occurs at a few key times after diagnosis—and for a few different reasons, here are some examples: Immediate denial—the diagnosis isn’t right. Nope. Couldn’t be. I don’t know anyone who has that. I don’t even know what gluten is. I’ve never heard of celiac disease. I don’t have symptoms…my symptoms are mild. It’s just lactose intolerance, I’m sure. I don’t have diarrhea, so I couldn’t have that. I’m overweight, and all celiacs are skinny. My results were inconclusive. Someone must have made a mistake. All of these thoughts can be symptoms of denial. A few weeks into the diet—I don’t think that diagnosis was right. This is when the reality of doing this for the rest of your life sets in. One angel (the good one, of course) sits on one shoulder whispering, “You know you need to stay gluten-free—keep it up—you can do it! Mmmm, yummy cheese on this gluten-free toast. The other shoulder is home to the Devil-in-Denial: “No way are you going to another happy hour and order wine and celery sticks while all the other guys are drinkin’ beer and deep-fried stuff. You don’t have no stinkin’ intolerance. Come on—just one beer...and one piece of pizza. It won’t hurtcha. No stinkin’ intolerance…” This is really just a period of ambivalence, hoping beyond hope that you don’t really have this condition, choosing to lean toward believing you don’t. Danger zone: I never had that. The most dangerous type of denial occurs several months into the diet, when all of a sudden you realize you feel so good that you don’t even remember the last time you felt bad. That’s when people often think, “I knew I just needed a little bit of time to get over that bug I had! I feel great. I’ll bet I never even had anything wrong with me.” When Others are in Denial Then there’s the type of denial that our family members and loved ones express. Ask anyone who is gluten intolerant or has been diagnosed with celiac disease if they have relatives who won’t be tested, and chances are, you’ll get a surprised look as though you just guessed what color of underwear they’re wearing, and a “yeah, how did you know?” Because we all have them. Well, most of us do. Why is it so hard for our relatives to believe they might have this? It is, after all, one of the most common genetic diseases one can have—and it does run in the family. Yet we’ve all heard comments like: No, I don’t have that (blunt, bold, and full-on denial). I don’t think I need to be tested (oh, really, and that would be because….?!?) I was tested once, and the tests were negative (remember, once-negative does not mean always negative—also remember there are false negatives). I was tested, and my results were inconclusive, so I don’t think I have it (inconclusive may be a euphemism for mildly positive). I don’t have any symptoms (oh, really? There are about 250 symptoms, and you have NONE?) My symptoms really aren’t that severe; I can live with them (so you’ll just wait till you’re really sick and doing long-term damage to start trying to improve your health?). I couldn’t do the diet anyway, so I’m not going to bother being tested (now there’s a rational argument for you). Bottom line is they don’t want to have celiac disease, or they don’t want to give up gluten. Some of your relatives may even refuse to believe you have it. I’ve met many people with celiac disease who have been accused of being hypochondriacs or neurotic. The problem with denial is that it justifies eating gluten. When you have this epiphany “realizing” that you don’t have celiac disease or don’t need to be gluten-free, it’s tempting to run, not walk, to the nearest Krispy Kreme outlet. Resist the temptation. If you’ve been on the diet for awhile, then yes, you feel great, but it’s because you’re not eating wheat or gluten, not in spite of it. The danger in testing the waters is that you may not have any reaction when you do, and then you’re likely to jump to the obvious (by which I mean “desired”) conclusion and confirmation that you never needed to eliminate wheat or gluten in the first place. If you still wonder whether or not you have a medical reason for cutting gluten from your diet, here are a few things you can do to help solidify things in your mind: Get properly tested. Get a second (or third) opinion. Talk to other people who have been diagnosed with the same condition about your symptoms and your feelings of denial (chances are they’ll grin and say, “Yep, I felt that way at one point, too”). Write it down: List your symptoms, the symptoms of the condition, and how you feel if you’ve been following the diet. Sometimes seeing it in writing is the just the proof you need. Denial, by the way, is one of the most compelling arguments in support of proper testing and diagnosis. If you’ve been confirmed with a diagnosis, you may be tempted to fall into a state of denial, but it’s going to seem pretty silly, even to you. But also keep in mind that if you’ve been tested and your results were inconclusive or negative, you may need to consider re-testing or other alternatives. The tests have changed over the years, and maybe your tests were done long ago. There are also false negatives; and you can be triggered at any point in your life, so just because you were negative once doesn’t mean you’ll be negative again. And finally, there are people who are negative on all of the tests, yet their health improves dramatically on a gluten-free diet. Go figure. Remember, if it looks like a duck, walks like a duck, and quacks like a duck, it’s most likely a duck, even if you wish it were a pigeon.

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). 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.

Celiac.com 03/20/2020 - Food hardly ever entered my mind. In the past, I practiced intuitive eating. If I was hungry for a burger, I had a burger. Pasta, then I had pasta. I felt what I wanted and I got it. Simple as that, without stress or worry. Most people are accustom to eating this way, but things changed dramatically this past week, with rapid rise of COVID-19 cases. Intense emotions are swirling around buying food. Shelves are empty and people fear they won’t be able to buy the essentials, let alone their favorites. Please stop worrying, I have you covered. You see, I am a celiac. Life changes with the onset of disease. Celiac disease was my game changer because it thrust me into a life of food preoccupation. Celiac disease is an autoimmune disease triggered when people eat gluten (a protein found in wheat, rye and barley). Ingestion of gluten causes an immune response. In essence, the body begins an attack on its small intestine and prevents nutrients from being absorbed. If left untreated, the symptoms are terrible, but if a gluten-free diet is strictly followed, those same awful symptoms go away. Notice the word strictly. Without strict adherence, the symptoms come right back. It is the strictness of the gluten-free diet in the life of a celiac that makes food so central in our lives. Running errands and grabbing quick fast food is out of the question. Grocery shopping requires an hour reading every label because gluten hides in everything. With celiac disease, food goes from a thoughtless pleasure to a chronic worry. When you leave your home, there might not be food available that you can eat. Herein lies the overlap with COVID-19. You have to think strategically about food rather than relying on it being available. People with celiac cannot assume restaurants or dinner parties will have food free of gluten, nor should we. It is our responsibility to feed ourselves in a way that does not harm our bodies. I regularly bring my own food to the mall or to a potluck. Popping my own popcorn and smuggling it into the movie theater is my move. All of this gluten-free preparation takes time and necessitates the sacrifice of other activities. Sundays involve hours of food prep for the week. I think about my upcoming plans and I strategize. On the go means tuna pouches, dried fruit and protein bars. Time at home allows for fresh fruit and vegetables. I think about where I am, what I have, and how to eat in the healthiest way given the combination of the two. The point is, I think about it. What I have learned as a celiac is that food is not easy and it certainly is not automatic. There are even times when it is unavailable. To cope, I am flexible and make adjustments within the confines of my dietary requirements. It seems hard at first. It is normal to be angry or despairing when what you want to eat is no longer an option. But the mind’s greatest achievement is to accept what cannot be changed. It seems we are destined to live under these strange circumstances for the foreseeable future. In this new world, restaurants might close and the grocery store might not be stocked. It’s okay. Embrace the world of canned and frozen goods, experiment with sauces and spices, and spend time thinking about how your food can be different and healthy. It’s a challenge flung your way. Treat it as such and you will learn to be grateful for what you have rather than sad about what you have lost. I coped with the loss of gluten in my delicious Chicago-style pizzas but discovered the joy of avocado on just about anything. You too will cope with what you are losing now, but maybe you will remember the deliciousness of canned peaches.