What I Wish People Understood About Having Celiac Disease

Stop grouping us with the posers. Not everyone who is eating gluten-free is jumping on the latest dieting bandwagon. Here's what you need to know about Celiac disease.

I get it. You’re tired of hearing about the gluten-free fad. I am too.

It seems everyone is going gluten-free these days, from your BFF to celebrities like Miley Cyrus. Some believe a wheat-free diet will put them on the fast track to weight loss. But like any diet trend, followers might stick to it strictly one day, then take a “cheat day” and eat cake the next. For these people, gluten-free is a choice that they can make, a diet rule they can break.

But for sufferers of Celiac disease–a serious autoimmune disorder that can lead to intestinal damage and other severe health problems, such as multiple sclerosis, infertility, and intestinal cancer—going gluten-free isn’t a fad. It’s the only way we have to manage our disease. And a dramatic increase in recent years of people claiming to be “allergic” to gluten when they’re really only gluten-free by choice has caused a backlash that is catching people who have Celiac disease, like me, in the crossfire.

From a certain perspective, it’s understandable that this backlash has occurred. When non-Celiac diners insist their appetizers must be gluten-free—which requires special attention and extra work for the kitchen staff, such as changing gloves and thoroughly cleaning their workstation—but then proceed to order cheesecake with a very gluten-filled crust for dessert, restauranteurs rightly get upset.

But because of this, when a true Celiac sufferer sits down to dine, the staff’s patience for our requirements is already long lost. When everyone cries wolf, after all, it’s easy enough to slip into thinking that wolves simply don’t exist.

I’d love to not worry about having to stick to a GF diet. But it’s not that simple. There is no magic pill for Celiac disease. All we can do is avoid ingesting gluten (the protein found in wheat, rye, barley, and triticale). So in the face of what I see as some widescale misinformation about people with Celiac disease who have no choice but to stick to a Gluten-Free Diet, no matter how others abuse it, I wanted to dispel some of the misconceptions.

I’m not “picky.”

If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake.

Well, perhaps I am particular when it comes to things like wine, art, and words. But I love food. And I cherish the chance to try new things. I don’t avoid gluten-filled foods because I’m “picky.” If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake. I’d go to Italy and bury myself in a giant bowl of handmade pasta. But I can’t. If I ingest even a small bit of gluten, it will trigger an autoimmune response and my body will essentially attack itself, causing severe headaches, inflammation, exhaustion, and damage to my intestinal villi (the tiny projections found on the folds of the small intestine, responsible for absorption of nutrients).

I’m not on a weight-loss diet, and I can’t “cheat.”

If this were a diet by choice, I’d have happily ditched it long ago! It’s not the calories I’m concerned with; it’s the chaos and damage gluten causes my body that keeps me from “just having one bite” of my grandmother’s award-worthy apple pie, my mom’s best banana bread, and that delicious dessert you spent all day baking. Trust me, I want to taste them all. But doing so will cause much more than a calorie gain; the reaction to the gluten protein will inflict actual pain.

I’d prefer not to talk about what happens if I eat gluten.

It’s not you; it’s me. People with Celiac experience a variety of symptoms when they ingest gluten. I do appreciate that you want to understand more about this disease, but I’d prefer to spare us both the gory details, especially if it comes up over dinner.  I don’t want to leave you totally hanging, so think of it like this: Have you ever had really bad food poisoning? How did you feel? What was your body’s reaction? Not the best topic for a dinner conversation! Add to that a headache, fatigue, inflammation, and damage to the small intestine, then multiply all of the above by about five days—that’s what it’s like if I eat gluten.

I would rather go hungry than risk getting sick or inconveniencing you.

Now that you know what happens if I eat gluten, you can understand why I avoid it at all costs. That’s fairly easy to do when I am cooking at home, but restaurants and social events are landmines for Celiac sufferers. Catering staff are often temp hires with limited knowledge of what’s actually in the dishes they’re serving. Chefs may be unavailable for questions during their shift or not even on site during an event. I am always hesitant to ask people to accommodate me. Event planners and brides-to-be already have their plate full, and I don’t want to pile on any more special requests. But when I don’t communicate my food restrictions, I am left with limited or no safe food options. So when I attend big events and weddings, I may go the whole day without eating a meal because the consequences of ingesting gluten are not worth the risk. And this is why…

I pack snacks in my purse like a chipmunk in its cheeks.

Open up any of my bags or purses and you’ll likely find nut and fruit bars, chips, and other non-perishable snacks—or at least remnants of them. Depending on where I am in the world, gluten-free foods aren’t always readily available. And going long periods of time without eating can trigger headaches, even in people that don’t live with an autoimmune disease. For Celiac sufferers, those headaches can be much more severe. Folks with Celiac disease often endure frequent migraine attacks. I experience a rare and debilitating type of migraine attack that mimics a stroke, so I’ve learned to pack snacks, whether I am just traveling to a nearby town or flying to a foreign country. This munchies-hoarding habit has become so obvious (and amusing) to my traveling companions, it even earned me the nickname “squirrel” while on safari in South Africa.

It runs in the family.

Celiac disease is hereditary, and it is particularly prevalent in Ireland, due in part to the history of gluten (or lack of) in Irish diets prior to the famine. I am nearly 50% Irish but didn’t realize I shared so much more than my green eyes, fair skin, and freckles with my ancestors until I visited Ireland a couple of years ago. Nearly every restaurant had a Celiac menu, and no one batted an eye at my requests for gluten-free foods.

I’ve eaten bread.

You can’t judge a gluten-free person by their gluten-filled past.

And pasta and pancakes and crackers—in the days before I knew any better. Celiac diagnoses were unheard of when I was growing up, so I devoured chocolate birthday cakes, peanut butter sandwiches, and a variety of gluten-filled goodies like many other American kids did. I also had a lot of unexplained stomach aches and migraines. You can’t judge a gluten-free person by their gluten-filled past. Many Celiacs suffer for years before identifying this autoimmune disease that’s responsible for their health problems.

Surgery, infections and emotional distress can trigger Celiac disease.

For some people, the symptoms of Celiac disease become “active” after physical or emotional changes or traumas, such as surgery, viral infections, and even pregnancy and childbirth. So it’s possible for a person to not exhibit symptoms early on in their life, but then, after an infection or trauma, experiences extreme physical reactions after ingesting gluten. When I lived in Thailand about 10 years ago, I was hospitalized with a viral infection. While I had hints of Celiac symptoms throughout my life, they showed up in full force after my hospital stay. It was only once I returned to the US a year later—with debilitating Celiac symptoms—that I started seriously searching for a cause.

I’m just as tired of the gluten-free diet trend as you are.

While I can appreciate that the fad has inspired many restaurants to jump on the bandwagon and add gluten-free foods to their menus (thus making it easier for me to find Celiac-friendly options), treating “gluten-free” as a phase or craze rather than a disease is dangerous. Of course, the restaurants aren’t entirely to blame. The framing of gluten-free as a lifestyle choice and diet trend rather than recognizing it as a necessity for gluten intolerant people has incited negative backlash, resulting in a blanket critical approach to anyone who dares declare themselves gluten-free. Some critics have even gone as far as writing articles with clickbait and harmful headlines, that reinforce criticism of gluten intolerance, making it more difficult for people that are actually living with this autoimmune disease to get the help and accommodation we need.

Frustrated by indecisive diet hoppers and the extra time, attention, and money spent on accommodating gluten-free requests that may or may not be legitimate, many restaurant servers and chefs have become indifferent and even angry. Servers often visibly roll their eyes or let out an irritated sigh to indicate their annoyance at my gluten-free inquiries. And some chefs feel it’s not their responsibility to label foods that contain gluten. But it’s not Celiac sufferers or restaurateurs that are the root of the problem.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration. And in turn, this is causing true Celiac sufferers actual physical damage. Numbed by the unnecessary demands of fickle diners, restaurant staff may consequently dismiss legitimate gluten-free requests and fail to take proper precautions when preparing the food. I have been “glutened” (unknowingly served gluten and then suffered the painful consequences), more times than I can count. Each time my auto-immune response is triggered, more damage is done.

I don’t want to “just stay home.”

The solution some people propose is that I should simply never eat out. The implication that Celiac sufferers are a burden and we should isolate ourselves is disheartening at best. And for some Celiacs, extended isolation can lead to depression.

A more sustainable and healthy solution requires all three groups (Celiac sufferers, fad dieters, and restaurateurs) to work together. Communication, honesty, and a bit of compassion are key:

  • Celiac sufferers need to clearly communicate with servers about the severity of their disease and accept that some restaurants are not always able to accommodate. Not because they don’t want to, but often because it’s impossible or cost prohibitive, particularly for smaller, family-run businesses that lack the time, space, or money to do so. For example, an Italian restaurant where flour is quite literally flying through the air is perhaps not the best place to insist on a fully gluten-free meal. I tend to avoid Italian restaurants (unless they are known to have GF options) for this reason—for my own safety and out of respect for the cuisine, chef, and staff.
  • Dieting diners need to be honest, too. If they have a genuine intolerance or health concern about consuming gluten, they should follow the above suggestions for Celiac sufferers. Otherwise, if they don’t require a strict gluten-free diet, they should not burden restaurants with the same extensive preparation that a completely allergy-free meal requires.
  • Restaurants can aim to have at least a few clearly labeled gluten-free options on the menu, so that no substitutions, extra work, further discussion, time, or expense is required. In this case, gluten-free folks know exactly what is available and they also accept the responsibility that, should they choose to order outside of the GF-labeled options, they do so at their own risk.

I wish you wouldn’t doubt the legitimacy of this disease just because you can’t see it or don’t understand it.

What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder.

Some people seem hell-bent on proving that gluten intolerance isn’t real. Strangers and even friends have tried to debate the validity of my condition. What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder. Even that clickbait article above agrees with me on that. I know it can be difficult to understand the inner workings of someone else’s intestines, but you can take my word for it or—if you are genuinely interested, you can take some time to learn more about it.

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