Category: Allergies & Celiac

If you have celiac disease, you may have friends, family, or a significant other who is hesitant about eating gluten-containing foods in front of you. You might also have friends, family, or a significant other whom you think would benefit from getting screened for celiac, but perhaps you are hesitant about how often to bring it up. Balancing relationships with celiac disease can be a challenge. Here are a couple of tips for maneuvering what can sometimes feel like a circus after being diagnosed with celiac.

1) Reassure those who don’t have celiac disease that you won’t be offended if they eat non-gluten-free foods in front of you.

Picture it. Your boyfriend/girlfriend bounds uninhibitedly toward the free samples in the bakery. He/she turns to you, and those gleeful peepers widen with horror as the realization hits that Boo can’t indulge. As bad as your significant other feels that you can’t participate in the free sampling, you may or may not feel worse, depending on your perspective about being diagnosed with celiac disease.

It’s likely that you’ll come across various people who feel guilty for enjoying glutenous foods in front of you. It’s a good idea to let them know that there might be a reason for them to feel guilty if they presented you with a dinner on spinning plates secretly laced with breadcrumbs, but otherwise, it really doesn’t bother you. Longing for a little morsel of bloating and pains? Don’t think so.

2) Encourage your friends and family to get screened, but don’t nag.

It is particularly important for your family members to get screened for celiac disease if you’ve been diagnosed because it’s genetic. Perhaps you’ve finally gotten through to your brother and he resigns to getting screened. Turns out, he tested negative. The tough part is potentially convincing him that he needs to keep getting screened, because celiac is something that could develop. Now you’re walking the tightrope between encouraging and nagging. A little too much encouragement and you could plunge into nagging, which could result in your brother completely tuning you out.

Maybe a year later your brother complains of a stomachache after a pasta dinner. Your ears perk up, and you immediately suspect celiac disease. You want him to get screened again, but he is fed up with your celiac paranoia and breathes fire whenever you bring it up.

This is a tricky case. Your relationship could be harmed if you push too hard, but your brother could be more harmed if you don’t push enough. The only advice here is that you know your audience, you state your points, and you let it go for a while. Pestering someone every day is not likely to yield favorable results, but planting an idea and letting it ripen (but not rot) might.

Juggling celiac/non-celiac relationships can be precarious business. If you’ve successfully convinced others to eat guilt-free when not eating gluten-free, or you’ve persuaded family members to get screened, or you’ve floundered on both fronts and want to share your stories, send us a message.

– The Editors

What follows is the story of Fidough, the pooch with extra letters in his name to remind his caretakers that he is allergic to dough… er… wheat.

Fidough had been suffering from itchy skin, respiratory issues, and vomiting for as long as he could remember.

“Now wait,” you protest. “How long is that?”

Long-term and short-term memory in dogs is an entirely different topic that I won’t broach here. But I will alter the start of the story since you so keenly questioned my premise.

Fidough had been suffering from itchy skin, respiratory issues, and vomiting for as long as his human parents could remember. (You can more easily make assumptions about how long this could be, right?)

One day, Maman (Fidough’s endearment for his mother which conveniently combined the words “ma” — as in… but ma!, or perhaps more frequently… but mom!) — and “human.” He particularly liked this term because aside from being a portmanteau, it was also the French term for one’s mom, and he prided himself on attempting to master the languages of not only Dog and Human English, but in the language of what he assumed his Bouledogue Français ancestors might speak as well: Human French. (If you’ve forgotten by now what I started my thought with, we’re here: “One day, Maman…) decided that she would take Fidough (who was then simply known as “Fido”) to the vet.

After examining Fidough, the vet hypothesized that Fidough might have a food allergy.

“Dogs can have food allergies?” She asked incredulously.

The vet nodded. He told Maman that the way to determine if that’s true is to try an elimination diet to determine the substance that is causing the allergic reaction. Eventually, it was determined that Fidough was allergic to wheat and dairy.

Maman was not unfamiliar with wheat causing unfavorable reactions. Her young daughter Keito had been diagnosed with celiac disease only two years previous. She knew how hard it had been for Keito to cope with not being able to eat certain foods — but how would Fidough fare, suddenly not allowed to sniff the fresh loaf of bread on the counter (inhalation of an allergen can cause respiratory issues) or dig into the garbage with his deft paws to pull out the wheat-containing dog food Maman would need to discard (ingestion could cause vomiting)? Fidough’s dreams of running endlessly after a tennis ball in open fields of sun-soaked wheat would only remain dreams (topical contact could contribute to Fidough’s skin irritation).

And would guests remember not to feed him scraps from the table? Maman recalled how insecure she felt about sending Keito to school without reminding her teachers at least twice about her celiac. Would dinner guests forget that Fidough couldn’t eat certain foods even as a treat?

That’s when Maman made the decision to change Fidough’s name from Fido to Fidough to remind her guests of Fidough’s allergy, and to remind even Keito that she wasn’t alone: Fidough had food restrictions just like her.

– Kaitlin Puccio

 

I used to think that foods advertised as gluten-free were actually free of gluten. I realized that this was not always the case when I went into a chain restaurant and ordered from their gluten-free menu. After double-checking that what I ordered was gluten-free, I was told that their food “is gluten-free but not recommended for celiacs.” So… it’s somewhat gluten-free? Well, how gluten-free is it, exactly?

This got me thinking: Are there degrees of gluten-freedom? Can something be more gluten-free than something else? Doesn’t “free of” something mean that there is none of that thing, like “smoke-free” means “there is no smoke” rather than “there is a little bit of smoke”?

Or does the meaning of “gluten-free” change depending on perspective? That is, if I have celiac, my definition of gluten-free is different. After all, words mean what we determine they mean.

Assume that there is a gluten-free scale. On one end of the scale is Gluten (Point A), meaning not gluten-free. On the opposite end of the scale is Not Gluten (Point B), meaning gluten-free.

Also assume that this scale is a universally-accepted scale. It applies to those with celiac and those without celiac. So everyone has agreed that the definition of gluten-free means free of gluten.

For the sake of the argument, I will not address the possibility of varying degrees of freedom, but rather, state that free of gluten is free enough of gluten that a person with the most dire case of celiac disease would not have any adverse consequences of consuming the thing deemed “free of gluten.”

So. At which point between Point A and Point B does gluten-free become not gluten-free? The philosophy of language might help make sense of this.

1) The Sorites Paradox
The word “sorites” is derived from the Greek word for “heap.” The paradox is so named because it deals with the predicate “heap” as a scalar, or gradable, predicate. For example, “This is more of a heap than that.” In the form of a logical argument, the Sorites paradox would be set up as follows:

Premise 1: A 10,000-grained collection of sand is a heap.
Premise 2: If a 10,000-grained collection of sand is a heap, then so is a 9,999-grained collection of sand.
Premise 3: If a 9,999-grained collection of sand is a heap, then so is a 9,998-grained collection of sand.
…
Premise 10,000: If a 2-grained collection of sand is a heap, then so is a 1-grained collection of sand.
Conclusion: 1-grained collections of sand are heaps.

This conclusion is paradoxical; 1-grained collections of sand are not heaps. The logical argument above, however, shows that our conclusion is that 1-grained collections of sand are heaps.

The major premise of this argument states that for any F, if F is, say, a heap, then its successor F¹ is a heap. Or, if F is “Gluten” on our scale, then F¹ is “Gluten.” We could reject this premise in an attempt to avoid the paradox, but if we do so, we are ignoring two principles: the No Sharp Boundaries Principle and the Tolerance Principle.

2) The No Sharp Boundaries Paradox
The No Sharp Boundaries Paradox states that if F (heap) is a gradable predicate, then F does not have a sharp boundary. So there is no single point at which the collection of sand changes from being a heap to being not a heap — or no single point at which the food changes from being gluten-free to not being gluten-free. The No Sharp Boundaries Paradox would require that we make an apparently seamless transition from definitely not a heap to definitely a heap without saying anything contradictory (such as saying that F is a heap but that its successor F¹ is not). We must appear to have no sharp cut-off points on the scale.

3) The Forced March Paradox and Tolerance Principle
The Tolerance Principle states that for all members of a series, if one member is F (heap) then its successor is F (heap) as well. If we say that there is a precise boundary, we are ignoring the Tolerance Principle.

For example, I cannot say that Heap(6) is true (meaning, I pick a point along the scale, point 6, and at point 6 the collection of sand is a heap) and that Heap(5) is not true (meaning, I pick a point along the scale, point 5, which is the point directly beside point 6 that only has one less grain of sand in its collection than point 6 has, and at point 5 the collection of sand is not a heap). They are successive items in the series, and I must assign them the same semantic status. Otherwise, I would be saying that there is a precise boundary at Heap(6) and Heap(5). So I would be saying that an 8,998-grained collection of sand is a heap, but that a 8,997-grained collection of sand is not a heap — an arbitrary distinction.

4) Degree Theory
The Degree Theory states that there are degrees of truth. Let us look at a case of “red”. Say Y is more red than X. That is to say, Y is red to a greater degree than X. Recall that scalar predicates can be characterized by “more” or “less.” So we can describe X as red, and say that Y is more red than X. If there are degrees of predicates like red, then it is natural to think that there are degrees of truth. If Y is more red than X, then it is true to a greater degree that “Y is red” than that “X is red.”

But if “C is gluten-free” can be true to a lesser extent than “D is gluten-free,” some people can get very ill if they eat C thinking it’s just as gluten-free as D. There needs to be zero tolerance eventually associated with the term “gluten-free.” “Gluten-free” must not be a vague predicate. Its degree of truth must be such that if something is labeled gluten-free, it must be free of gluten to the extent that it is safe for those with celiac disease.

I have been noticing that when I ask for a gluten-free meal in a restaurant, waiters will ask me if it’s an allergy or a choice. I didn’t know why it mattered — didn’t gluten-free mean gluten-free regardless of my medical needs? But I’ve come to realize that there may indeed be degrees of gluten-freedom, degrees of truth to the predicate “gluten-free,” which can make safely navigating the world with celiac disease somewhat of a paradox.

– Kaitlin Puccio

Currently the only available treatment for celiac disease is a gluten-free diet. It may seem simple. If I have celiac disease, then I cannot consume gluten. End of story, right?

Not quite. Researchers are working on a pharmaceutical treatment, which unveils a few ethical questions that might not generally be given the limelight.

1) Why study something that can be treated with a lifestyle change?

It might be argued that the money being put toward researching a pharmaceutical treatment for celiac disease, which can be treated with a lifestyle change, is money that would be better used elsewhere.

However, those who must follow a gluten-free diet for medical reasons are at the mercy of manufacturers, restaurants, waiters, etc. There is a constant risk of cross-contamination, which can be detrimental to those diagnosed with celiac disease.

2) Without a pharmaceutical treatment, who would be responsible for cross-contamination and gluten-related illness?

Celiac disease can develop into cancer, epilepsy, and other serious long-term health issues. And for women, those issues can come in the form of fertility issues, including stillbirths.

Could a lack of funding for research to develop a pharmaceutical drug be said to contribute to the deaths of unborn children?

That is, if a woman were to be glutened despite her efforts to remain gluten-free, and she gives birth to a stillborn child, should the production facilities that are not dedicated gluten-free be held accountable? Or perhaps restaurants that don’t educate their waiters about celiac disease and serve her contaminated food? Perhaps it is the fault of those who chose to fund different types of research because celiac research didn’t seem as important.

Or does the lack of funding put it into a category of “I didn’t touch this, I had nothing to do with it, so I’m in the clear.” Isn’t doing nothing a choice?

3) Should celiac disease research be part of the money allocated for mental illness research?

Celiac disease has been linked to an array of mental issues, including depression. Ninety percent of the body’s serotonin, which is responsible for mood elevation, and fifty percent of the body’s dopamine, which is important for motivation and attention, lies in our gut. If the gut is unhappy, the brain is unhappy.

These are not questions that can be answered in 500 words. Why bother to publish questions that don’t come packaged with answers? Sometimes answers are hidden within unbegun conversations. Logical discussions. Asking questions and listening are just as important as proposing answers.

I’m not here to tell what is and isn’t ethical. I may be the one with the mic, but I’m listening.

– Kaitlin Puccio

May is Celiac Awareness Month. My guess is that it’s mostly celiacs who are aware of this; it’s celiacs who are more aware of the facts about the disease, the stats, the treatment.

Celiac disease websites, message boards, and blogs are probably visited mainly by celiacs, or by those suspecting that they have celiac or non-celiac gluten sensitivity.

But sometimes it’s those who are uninterested, unaware, undiagnosed who need the information the most. It’s a task made more difficult, ironically, by the popularity (or infamy) of the disease’s treatment.

Gluten-free. Depending on whom you talk to, it’s a diet, a treatment, a lifestyle, or a fad. And it’s ubiquitous. It’s overused. It’s played out. It’s diluted.

The popularity of the gluten-free diet has both helped and hurt those with celiac disease. It has brought more options to the shelves of grocery stores. And it has also brought criticism, mockery, and dismissiveness from those who don’t even realize that they may be sneering their way to an early grave.

The gluten-free diet might never be taken seriously because it has moved into the realm of “fad.” Okay, fine. However, one downside of all the hubbub about the treatment is that the disease a gluten-free diet treats has been overshadowed. It’s when the disease isn’t taken seriously that the problems start to arise.

Celiac disease is not a fad (despite celiacs maybe wishing it would just go away already). It’s an autoimmune disorder, and it’s genetic. Most celiacs already know that, and they might also know how hard it can be to convince family members to get screened for it too. Maybe because the people they are trying to convince are sick of hearing about gluten. Or maybe because they are tired of hearing that they should get screened just because someone else tested positive. Or maybe they’d rather not be diagnosed because they don’t want to give up gluten.

No celiac wants their family members to have celiac disease. But they don’t want them to risk feeling sick, being malnourished, or continuing to damage their insides either. Screening for celiac is not about living gluten-free. It’s about screening for a disease for which, luckily, there is a treatment.

According to Dr. Daniel Leffler, director of research for the Celiac Center at Beth Israel Deaconess Medical Center in Boston and NFCA Scientific/Medical Advisory Council Member, celiac disease should be a part of family medical history, and getting screened should be the default for those who have celiac in their family.

But what should be is not necessarily what is, and the National Foundation for Celiac Awareness (NFCA) has launched a campaign that aims to bring us one step closer to this ideal. “Seriously, Celiac” urges diagnosed celiacs to talk to their families about getting screened. In an interview with Alice Bast, president and CEO of the NFCA, she mentioned that the key is keeping the focus on the disease, not the lifestyle.

For example, say you have been diagnosed with celiac disease and want to convince your family members to get screened. Rather than saying something along the lines of, “Maybe you should try going gluten-free,” you might instead explain that celiac is genetic, and all you’re asking for is a simple blood test. It’s a small ask that might lead to a lifesaving diagnosis — and can save years of distress.

Jillian Lagasse, co-author of The Gluten Free Table and The Lagasse Girls’ Big Flavor Bold Taste and No Gluten, recalls feeling panic and excitement when she was diagnosed with celiac disease over 10 years ago. Panic because she had been diagnosed with a life-changing disease, and excitement because, well, after suffering throughout her entire life and being misdiagnosed several times, she finally had a diagnosis.

Okay. This all might be sounding very self-serious. Can’t I lighten up? Crack a joke? Here’s the problem with that. There are people who make jokes about being gluten-free, and it’s not always understood that those jokes are generally aimed at the absurdity of the fad, not the treatment. There is a difference between the gluten-free fad and the gluten-free treatment, but it all gets lumped together as “gluten-free.” Then more jokes are made, and the race to see who can come the closest to crossing the line begins.

But because the gluten-free treatment/fad line is so non-distinct, sometimes jokes do cross into treatment territory, which is on the side of disease. That’s when people stop taking seriously what needs to be taken seriously, which can be harmful. It’s rare to hear a joke about other kinds of diseases. Or to see so much skepticism and snarkiness surrounding them. As much as celiacs might have a sense of humor right along with everyone else about the gluten-free fad, it stops being funny when a celiac approaches his or her family about getting screened and is met with an eye roll.

Everyone will have a different reaction to being asked to get a blood test for celiac disease. Maybe it won’t be an eye roll, but reluctance. Or denial. Or fear. It might require patience, or it might require no convincing at all. Once we start slicing off the breadth of misconceptions and associations with the barnacle-like fad of ill repute, we can really start saving lives.

– Kaitlin Puccio

It’s not news that going gluten-free has tremendous health benefits for celiacs. Healing of the intestinal lining, proper absorption of nutrients, and mental clarity are just the tip of the iceberg. Given the symptoms of untreated celiac disease, these improvements as a result of a gluten-free diet aren’t surprising. What is surprising is how many other ways going gluten-free can impact your lifestyle.

1) After going gluten-free you’ll suddenly feel compelled to clean up the rest of your diet.
It might not be the case for everyone, but going gluten-free can feel a lot like a dietary spring-cleaning. Ever clean out your closet, then maybe your desk drawer, then somehow find yourself three hours later manually dusting each and every blind until they glisten like the rest of your newly lemon-scented room? You’re on a roll.

Well, despite all the gluten-free junk food available, you might find that you reach for the kale instead of the cake. As great as you’ll feel on a gluten-free diet, you’ll feel even better on a healthy gluten-free diet.

2) Not only will you start working out more consistently, you’ll learn about fitness on a deeper level.
Once you’ve experienced how good you feel not eating gluten — no stomachaches, no headaches, no fatigue — you’ll recognize when you’re pushing your body too hard. And on the flip side, you’ll know when you can push yourself a little more.

The combination of eating better and having the energy to exercise can be a huge motivating factor, and you might wind up researching the ten best yoga poses for runners instead of dragging yourself lazily to the gym for a light jog. You research what you can and can’t eat on a gluten-free diet, and might start applying those research tendencies to your fitness.

3) You won’t just be grateful for the extra hours you spend awake now that you’re not fatigued and constantly napping — you’ll want even more.
Like making up for lost time, once you see how much you can accomplish in a day when your brain isn’t foggy and your eyes aren’t closing, you’ll feel compelled to use your hours even more wisely.

Waking with the birds might not be your style, but now that you have energy you’ll probably strive to accomplish one or two personal tasks before even leaving for work rather than rushing out the door because you hit snooze a record-breaking ten times. Or maybe you’ll want to cut an hour of TV time at night in favor of practicing piano. You might even catch yourself setting your alarm early at least one weekend day instead of sleeping until noon. Imagine that. Being active instead of exhausted.

4) You’ll read more.
Or at least you’ll stop reading the same sentence over and over again like you used to because your brain was foggy. Even if you don’t find that you increase the amount of books you mentally consume in a month, it’s likely that you’ll remember more of what you did read. No one has time to reread paragraphs.

5) Staying out past your bedtime will be much less painful.
Remember when you used to plan on dinner with friends followed by dancing, or hitting a bar… but had to go home after dinner because you felt sick? No more. Your gluten-free diet will let you reopen the social doors that you might have closed. Not only is that good news for your social life, but it’s also good news for your professional life. All those networking opportunities and events that you missed — well, they might not pop up again, but new ones will, and you’ll be there.

6) Baking and cooking will actually become fun.
You might have always hated them. But when you’re gluten-free, baking and cooking become more like an experiment than a task. New recipes are constantly popping up, and developers are still trying to perfect them. Which leaves room for you to get into your kitchen and start coming up with your own concoctions.

Many of the foods you loved before are probably now on the forbidden list, so it’s up to you to start figuring out some replacements. You might come across some strange textures and flour combinations, but when you find one that works and figure out how to make it work in less than 20 minutes, you’ll feel like you graduated from the Culinary Institute of Apartment 2B.

– The Editors

Whether you are dairy-free, nut-free, gluten-free, or have any other type of dietary restriction, managing your diet in an office environment can be challenging.

1) Before work.
The first few days on any diet can be tough, whether it’s a diet adopted by choice or a diet adopted as a medical treatment. You don’t want to make it worse by having no acceptable food in your kitchen by the time Monday morning rolls around. And you don’t want to add any outside stress to your potentially already stressful week.

Diets aren’t necessarily about just eliminating food. They’re also about adding food, and substituting food. For example, if you are gluten-free, not only do you need to eliminate gluten from your diet, but you need to introduce other foods into your diet to be sure that you are getting the necessary nutrients that would normally be found in the glutenous foods you’ve eliminated.

Before the workweek starts, be sure that you have plenty of food to eat and haven’t just gotten rid of whatever you can’t eat. Eating out at lunch might not be as easy as it once was, so at least for the first week make sure you have enough food from your own home to sustain you.

2) During work.
If you’ve enlightened your colleagues to your new relationship with food, turning down a food that you actually can eat might cause a stir. It doesn’t matter if you hate rice cakes–they’re dairy-free and they’re being offered to you. And when you politely decline, you hear the protest: “But it’s dairy-free!” Yes, yes indeed. But so is tar, and you don’t like to eat that either. It might just take a while for your colleagues to adjust (and/or forget about your new dietary restriction) as well.

Or, say you are soy-free. Maybe the next time (or next five times) your colleagues order lunch as a group to save on delivery fees they tell you, “You pick the place and order since you know what you can eat.” You could interpret this as a genuine statement, or as code for “I don’t want the responsibility of ordering for everyone, and your soy restriction is a good excuse for you to do it instead.”

We get it. You’re sick of being stuck ordering for everyone, especially when you’re busy. But if you’re opting in to the group order and simply verbalizing your meal choice won’t work, isn’t ordering for yourself better than someone else ordering you a tofu wrap with a side of edamame?

3) After work.
If you don’t want the “life” part of your work-life balance to be dedicated entirely to your meal plan…have a meal plan. It will take you maybe an hour to come up with a meal plan for the entire week, an hour or two to buy the food, and another hour to cook in bulk.

This is a big chunk of time out of the week, but think about how much time you spend wandering the aisles in the grocery store wondering what to make for dinner or trying to remember if you have enough lunch for the next day. By the time you get home and start cooking, you’re ravenous. And then you do the same thing the next day because you were so hungry in the store the night before that you only bought enough food for dinner and rushed home.

By Friday, you’ve spent many unnecessary hours on this fruitless dance–double what you would have spent if you’d had a meal plan. Plus, having a meal plan written in front of you tends to highlight what foods you’re not getting enough of. Noticeable lack of leafy greens on your list? Add them in. We know we’d much rather go home and relax after work than worry that we have nothing in to eat.

There are many other challenges that manifest as a result of balancing an office job with dietary restrictions. And there are many ways to manage those challenges. What are some ways you’ve balanced your 9-5 (or 9-7) with your free-from diet?

– The Editors

Being Italian (or traveling to Italy) and being celiac might seem incompatible, but the opposite is true. Italy is one of the most accommodating places for people with celiac disease, and has a lot to teach about how to handle it.

1) “Celiac” holds more weight than “gluten-free.”
It doesn’t need to be said: Going gluten-free is just as much a fad as it is a medical treatment. When I order food, I ask if it’s gluten-free rather than ask if it’s safe for celiacs. I adopted this habit years ago, when I realized that saying “celiac disease” was met with the blank stare of cluelessness to what those words meant. I was much more successful when I started saying “gluten-free,” likely thanks to how popular gluten-free has become. Though I still see that blank stare sometimes.

The other day I was told that the gluten-free items on the menu were not recommended for celiacs because “they’re not totally gluten-free,” which I gathered means there is some cross-contamination. So if “gluten-free” is treated differently than “gluten-free for celiacs,” is my strategy at restaurants harming me?

In restaurants in Italy, it is common knowledge how to deal with customers with celiac disease, because Italians in general are very knowledgeable about it and take it very seriously. And as someone said in Italy, they treat gluten-free differently than if someone says celiac. If we do the same thing here, it seems like that distinction will be an important one for celiacs to make as fast-food and restaurant chains start putting gluten-free (but maybe not totally) items on their menu.

2) Acceptance paves the way to knowledge.
The prevalence of celiac disease among the Italian population led to their acceptance of it long before gluten-free became a “thing” in the US. Their acceptance has allowed them to gain knowledge of how it should be handled. Once accepting it as a serious medical condition, they learned about how to handle and treat it, rather than disregarding the treatment as a fad.

“Gluten-free” as a term is prevalent in the US, sure. But it’s not so much accepted with less than an eye-roll because of its fad qualities. In the case of “gluten-free,” the fad and the medical treatment are not mutually exclusive. But simply because gluten-free eating is in some cases a fad — and celiacs aren’t unaware of that — doesn’t mean that it should be disregarded as a treatment. The fad will pass. But celiacs will always be gluten-free.

3) Gluten-free food can, and should, taste just as good as “the real thing.”
I’m going to cheat here a little bit and talk about an Italian restaurant in the U.S. rather than one in Italy. I was at my favorite Italian restaurant some time ago. The pasta is excellent and reminds me of the homemade pasta I had the last time I was in Italy. But back then I wasn’t gluten-free. So while I was delighted to see that this restaurant offered gluten-free pasta (and various kinds, no less) I was prepared to be disappointed, to yearn for the “regular” pasta which was so delicious.

So when I took a bite and asked the waiter, “Are you sure this is gluten-free?” I was thrilled when he nodded his head, because I wasn’t able to tell the difference. I immediately had everyone at the table who had ordered the regular version of my dish try the gluten-free version to compare. They couldn’t tell the difference either.

When I realized that it was actually possible to make gluten-free pasta that doesn’t taste gluten-free (“mushy” and “like cardboard” are a few descriptions I’ve heard… or said), I couldn’t imagine that good Italian restaurants in Italy would serve less than excellent pasta, gluten-free or not. I suppose a perk of acceptance and knowledge of celiac is improvement to the available treatment.

– Kaitlin Puccio

I’m pretty accepting of the fact that I can’t eat gluten-containing foods without suffering the consequences. I know that it will irk some people and result in dubious looks from others. I know that when restaurants charge more for gluten-free sandwiches it’s because gluten-free bread costs them more than regular bread, and I am happy about the fact that they offer it at all rather than grumpy about the extra cost. (The difference in price is tax-deductible anyway.)

It frightens me sometimes in restaurants when I have to explain what I can’t eat and why, because I don’t trust that the crash course I gave the waiter was sufficient and that my food won’t be cross-contaminated. But I don’t get annoyed when someone doesn’t know what celiac disease is if they listen to what I tell them.

For some reason, though, I’m still surprised when someone in the food service industry gets it completely wrong. I mean, gluten is a pretty hot topic right now. I can’t imagine how someone who works in a restaurant has been so thoroughly sheltered from all gluten-related talk. Apparently, it’s possible.

Here’s what happened to me recently at a restaurant. While the waiter rattled off the list of available desserts, I mentally checked the ones that were usually gluten-free. Crème brûlée without the cookie, ice cream, sorbet. Great! Three options. Knowing that there were two gluten-free customers at the table, the waiter told us that none of the desserts were gluten-free. Not surprising. Desserts in restaurants like that usually weren’t unless they were somehow modified — like crème brûlée without the cookie — and often the desserts were pre-made and unmodifiable. So, after the rest of the table had ordered dessert, my gluten-free comrade and I ordered ice cream.

“None of our desserts are gluten-free,” the waiter replied.
“Not even the ice cream?” It was possible, though rare, that the ice cream did have some sort of gluten hiding in it. But when the waiter clarified, I knew it didn’t.
“None of our desserts are gluten-free. They all have something — eggs, dairy — something.”
“But I can’t have wheat,” I said, not bothering to elaborate since I knew it wouldn’t matter.
“Nope. We’ve been through this before here. They all have something. We don’t want you to get sick or anything.”

Hmm. Then maybe learn about what I actually can’t eat. I realized that we gluten-free customers had been lumped together in a big glom of allergies and exiled to a dessertless land. Nuts, dairy, eggs, wheat — there was no distinction. Even if I wanted to get on the train to wheatless land, tottering along the tracks with a big bowl of ice cream and wet walnuts, I had to go to wheateggsnutsdairyless land instead. It didn’t matter that the ice cream was actually gluten-free, because somewhere, someone couldn’t have dairy, and the ice cream was placed on the “allergenic” list.

(Interesting, because if they were really concerned with all allergies, and didn’t serve dishes that contained any allergens to anyone with any type of allergy, then why had there had been sesame seeds garnishing my rice? Seed allergy nightmare. And surely someone with a corn allergy couldn’t eat everything I had ordered. How about shellfish?)

If a dish were unservable to someone with a single food allergy or intolerance because someone, somewhere is allergic to something else in it, there would be nothing left to serve. I can’t eat wheat; I can have dairy, eggs, and nuts. Some other people can eat wheat and can’t have dairy. It kind of comes along with us not being clones of each other.

Simply because there are many allergies does not mean that it’s safe to lump them together and regard them with no distinction. Different allergies require different care and attention to detail. If a server simplifies and dilutes food allergies and intolerances to just the big headlines — Wheat, Dairy, Nuts, Eggs — and that server doesn’t know/care that a wheat allergy doesn’t equal a dairy allergy, can I trust that server to know/care that gluten is in more than just wheat?

 

– Kaitlin Puccio

When I first went gluten-free, I learned a lot about celiac disease and gluten-free living. Somewhere along the way, between the blogs I read about how wonderful it was to be gluten-free and the anecdotes I heard about how a friend’s friend went gluten-free and started winning marathons, I conjured up an image of what the ideal gluten-free girl was like.

In my mind, the “perfect” gluten-free girl is unattainable. Now that she’s gluten-free, her life is wonderful. She’s always cheerful, is in excellent health, and for some reason is always wearing a sports bra and tight workout shorts. (For the record, in my mind she also has a glorious tan, which I do not.) If Plato instead of I had imagined her, he would have thought she was the pure form of a gluten-free girl. Here are three ways I’m not this perfect gluten-free figment of my imagination.

1) I get grumpy about being gluten-free.
Let’s say my imaginary gluten-free comrade (let’s call her Celia Yay) and I are out to lunch. I see something that sounds delicious on the menu. What’s more, it sounds gluten-free. I try to pick a second option in case it’s not, but I’m sure it is, and I’m sure that it’s the only thing I want. So when the waitress tells me it’s not gluten-free, I don’t take it lightly. I have my moment of “GRRRRRR!” and then get on with the only thing I can really do — order something else.

But Celia Yay, the perfect gluten-free girl, would not have had that “grrrrrr” moment. Because she knows that in the end it’s just food, and there are plenty of delicious gluten-free options, and she’s just grateful that she found out she had celiac before doing a lot of damage. She’s right, of course. But she’s also not a human being. She’s a figment of my imagination. And human beings get frustrated.

2) I eat “gluten-free” foods.
Yes, my usual diet consists of things that don’t need a food label, but I also really like cupcakes. And cookies, and pancakes, and pasta. Plus, I love to bake. So every once in a while I eat these things, whether I bake them myself or buy them from the store.

Celia Yay would never eat such things. She sticks to her supremely healthy diet, never touching processed foods, and I’m always impressed when she turns down dessert even on holidays. But really, eating gluten-free cookies every so often isn’t going to have a huge impact on my overall health. While her strict discipline may work for her, I prefer to be a little more lenient.

3) I don’t feel gung ho to work out every day — especially in the morning.
As of right now, I work out about 5-6 days per week. While I always enjoy exercise when I’m actually in the middle of it, it’s the last thing I want to think about in the morning when I first wake up. Even if I wake up at 8 a.m. and know I won’t start working out until noon, until I’ve wrestled off my sleep inertia, I sometimes grumble at the idea.

Celia Yay, however, hops out of bed even before her alarm goes off and jets straight to the gym to jump-start her day. She’s excited about exercising, even on the sixth day when she’s tired. She’s thrilled that she no longer feels chronically fatigued after going gluten-free.

While I’m happy that I have more energy now too, I still sometimes want to press “snooze” 15 times before I start my day. But I don’t let that prevent me from dragging myself out of bed, and once I’m up I leap into the day, glad that I didn’t press snooze.

While I don’t feel pressure to be like Celia Yay, I use her as an inspiration. She is the voice of reason when I get grumpy about being gluten-free. She is the girl who keeps my cookie consumption to one instead of one box, and the force that pulls me out of bed when all I want to do is sleep in. She reminds me of how lucky I am that I went gluten-free before serious damage was done, and puts me back on track to becoming the best gluten-free girl I can be, pale skin and all.

*All characters appearing in this article are fictitious. Any resemblance to real persons, living or dead, is purely coincidental — and really sublime if that person resembles Celia Yay.

– Kaitlin Puccio