Category: Allergies & Celiac

Going gluten-free can feel clumsy enough without the added pressure of managing social situations. But unless you never go out, you go out sometimes (I know… the clarity with which I see things is unprecedented). And if you have celiac disease, those “sometimes” when you go out, you’ll always be gluten-free. Even on holidays. And at parties and dinners. Still when receiving gifts, and when offered free samples…

1) Holidays 
Holidays can be tough on anyone who has food restrictions. Generally holidays are times full of family, friends, and “fun foods,” as my cousin called them at our last gathering, declining zucchini slices in favor of cornbread. The cornbread was gluten-free, as was everything else on the menu since I cooked it all myself. There is no “cheat day” for celiacs, so our “fun foods” still need to be gluten-free.

However, unless the host is gluten-free, usually the meal plan for holidays is not. The selection of “fun foods” and gluten-free foods show no signs of overlapping, and the shrimp cocktail appetizer becomes your entire meal. Even if you reminded the host in advance of your gluten-free needs.

How do you avoid a holiday like this? First, define what a “fun food” is to you. Is it an apple pie? Then bring a gluten-free apple pie with you to share with the rest of the guests. In my experience, if guests have a choice between a gluten-free dessert and a “regular” dessert, they’ll choose the regular, so you won’t have to fight for a piece of the gluten-free.

Even if all you eat is shrimp and gluten-free apple pie, that “fun food” pie will probably make it feel more like a holiday. And you won’t feel strange sitting at a table full of food you can’t eat, the host won’t feel strange not having any food for you to eat, and the guests won’t feel strange sitting near you with their plates full of variety as you nurse your apparent shrimp-only diet.

2) Parties
Last week I attended a family gathering. But it wasn’t my family gathering, it was a friend’s family gathering — a friend who was raised in an entirely different culture. It was one of those gatherings where you want to lay low, fit in by not standing out, and therefore make a good impression.

Being gluten-free makes that difficult. We informed the matriarch/cook about my gluten-free dietary restriction in advance and offered to bring something so she wouldn’t have to go out of her way to cook something gluten-free. We were assured there would be something for me to eat (shrimp cocktail, I ventured to guess).

But shortly after we arrived I realized that “gluten-free” had been mistaken for “vegetarian.” No problem. I would just need to make sure that whatever vegetarian foods I did eat were also gluten-free.

But my hesitation to fill my plate without asking what the ingredients were didn’t go over well. Between the language barrier, the culture barrier, and constantly turning down offers for pasta and sandwiches, I was certain that I looked skeptical and picky. The barrage of “try this,” and “I cooked it myself” hit me all night.

Luckily, there are many different ways (and languages) in which to say “no thank you,” and my constant refusal will be gone and forgotten much sooner than my stomach pains would have been if I’d indulged. I found that a refusal with a smile and a compliment on whatever I could eat was welcome (but also led to more food offerings).

3) Dinners
Dinner — or breakfast, brunch, or lunch — with friends, colleagues, and dates can be a strange source of awkwardness for celiacs. Unlike holidays and parties, where you may be a guest in someone else’s home and not in control of what’s being cooked, at restaurants you do have control. You can talk to the chef or waiter, and usually they are happy to accommodate a gluten-free meal by making a few minor tweaks. But is your gluten-free request a red flag to the people around you?

I was chatting with a friend the other day who knows about my medical requirements for eating gluten-free. He told me that if he’s on a date with a girl and she says she’s gluten-free, it’s a deal breaker.

What? What if she has celiac disease? And if she doesn’t, who really cares if she is or isn’t gluten-free? Now, I can understand if he was dating a girl who constantly pushed him to eat gluten-free when he doesn’t want/need to. That could get annoying. But a deal breaker just by saying “I’m gluten-free”?

Then I started thinking about celiacs having dinners with non-gluten-free clients. Do the clients think the same way when someone at the table orders gluten-free? Is it, perhaps subconsciously, an actual deal breaker?

The fact that it shouldn’t be something that we feel the need to hide doesn’t mean it isn’t. The gluten-free diet has a bad reputation, and the gluten-free treatment is lumped together with it. The business of celiac disease has many layers indeed. It’s a good thing the ordering and gluten-free revelation happens at the beginning of a meal — you then have the next hour or so charm your clients.

4) Receiving Gifts
It’s Valentine’s Day. Your significant other is trying really hard to get up to speed with this new gluten-free diet of yours. This year, instead of cupcakes, you get chocolates. Seems safe, right? You may regret ripping into four of those innocuous-looking little morsels at once because of more than just pounds on the scale.

If they were manufactured on equipment that processes wheat, there may indeed have been cross-contamination. You look for the disclaimer on the label that confirms this is the case. Do you A) disclose that you can’t indulge in those lovely, edible symbols of fondness, or B) do you let your beloved find them in the cabinet months later, untouched?

Either way seems pretty undesirable, but I’ve found that not being able to eat them (option A) is less insulting than not wanting to eat them (option B), so even though option A is disappointing for both sides, here’s a secret: It’s the thought that counts.

5) Free Samples
I was in a store recently where freshly baked brownies were chopped up into free-sample-sized pieces and put on the counter. Small store+cold day+hot brownies does not usually mean customers will back away from the counter, which is what I did.

As I moved empty-handed in the opposite direction as the rest of the shoppers, I was aware of those who found it strange that I would walk away from free samples. After all, they’re “free.” (The reason for the quotations, while I’m sure you could guess it, is another topic entirely and had no impact on my gluten-driven decision to avoid them.) Plus, it’s “just a small bite.”

In these situations, I find that a simple refusal rather than an explanation is best. No one really cares if you don’t eat the free sample, and they’re not listening to why you’re not. They’re not even really talking to you when they tell you “it’s a free sample.” They’re saying it out loud, partially to themselves out of excitement, partially wanting to share that excitement and knowledge of free food with the apparently unknowing, brownie-less passerby (you).

There are many social situations in which you might find it awkward to have dietary restrictions. But in my experience, feeling awkward has a lot to do with external pressures, or your perception of how you are viewed. And when it comes to being gluten-free, I’m only concerned with my health.

– Kaitlin Puccio

In “No Cookie For You,” I briefly mention how the practice of consciously considering gluten is different than passively knowing facts about gluten consumption and celiac disease. Here I explore that idea and dig deeper — beyond gluten consumption — all the way through to the surface: gluten contact.

1) Gluten Uncertainty Principle

A few weeks ago, I was out to dinner and asked the waitress if a certain side that came with my entree was gluten-free. Her reply: “How sensitive are you?”

My first reaction was to be surprised — isn’t asking whether a meal is gluten-free a yes or no question? But her question isn’t uncommon. I told her that I needed the meal to be absolutely gluten-free or else I would have significant medical consequences. She went into the kitchen to double-check with the chef, and returned to tell me that my choice of meal was indeed gluten-free. So I ordered.

When it arrived I confirmed, as I always do: “This is gluten-free?” She nodded a doubtful nod, and left the table. Without taking a bite, I watched her walk over to the manager to have a short discussion, who then came over to me.

“Is there a gluten question?” She asked me.

I repeated, “This side is gluten-free?”

And the manager told me that there is no gluten in the ingredients, but it is fried in the same oil that is used to fry other gluten-containing foods. A crucial tidbit to include when stating that something is gluten-free.

Could the chef not have known that cross-contamination can be just as harmful? Did he just not care? Was he annoyed at yet another gluten-free customer?

Or perhaps he was just very busy. The natural reaction to “is that gluten-free?” is generally to look at the ingredients, not to think beyond the box about how it’s cooked or where the food is manufactured/grown. Perhaps although the chef knew on some level that “gluten-free” goes beyond ingredients, his natural reaction was to consider the ingredients.

This can be detrimental to celiacs. Having knowledge vs. applying that knowledge to actual situations is very different; the same way that having an equation memorized for a math test can feel very different from reading a word problem that calls for the application of that equation. (And also calls for you to understand that it calls for the application of that equation.)

There is a certain amount of reasoning that must be applied to things memorized. Memorizing Celiac + Gluten = Bad isn’t enough when there are french fries and fried chicken on the menu and only one fryer in the kitchen.

2) Covering A Reaction to Makeup With Makeup

The other day I was having photos taken and informed the makeup artist that I need to use gluten-free eyeshadow, which I brought with me. She asked what happens if I use regular eyeshadow, and I told her that I get swelling and scaly patches on my eyelids and around my eyes… which I used to cover with more makeup. (Sure, you can retouch my photos, but you can’t retouch my eyelids.)

She replied that my skin was just dry because of my makeup remover. Maybe she was trying to interpret my issue using knowledge from what’s within her own experience — applying an “equation” she knew as a makeup expert to an actual situation involving makeup and bad skin. If I were to apply knowledge from my own experience to a situation involving makeup and bad skin, I come to a different conclusion because I am considering the gluten in that makeup. The same way the chef should have considered the contaminated oil the fries were fried in.

When I discovered a few years ago that my skin issues ceased when I started wearing gluten-free makeup, I discussed it with a dermatologist. She told me that I stopped being affected because I stopped eating gluten, not because I stopped wearing it.

If her argument is that gluten intolerance is a gastrointestinal issue that only causes damage when ingested and not when used topically, I understand that. (I won’t bring up how much lipstick we ingest…) The damage caused by ingesting gluten is not limited to gastrointestinal issues, so celiac disease may indeed manifest in the form of skin issues when gluten is ingested.

However, wouldn’t celiacs do well to assume that gluten can cause contact dermatitis and come into contact with it as little as possible? After all, peanut allergies cause issues for some people when peanuts are ingested but can also cause allergic contact dermatitis. Internal and external triggers are not mutually exclusive when dealing with food intolerances.

Our skin absorbs into our bodies what we put on it. We know that celiac disease is a gastrointestinal issue, but we don’t yet know if it’s only a gastrointestinal issue. To passively assume that gluten is only an issue when ingested means that we are not actively seeking the knowledge necessary to support that claim.

Experimenting on myself is certainly not the most scientific way of doing things. But in the absence of scientific proof (and a sample size >1), I fall back on logic. If I see that something is causing my skin to react badly, I will stop using that thing. Much like if I feel better when I don’t eat gluten, then I will stop eating gluten.

It surprised me that when I first went to my dermatologist with the scaly patches around my eyes, she didn’t do more research about my condition. After all, the more you know, the more you’ll know. Now my dermatologist seems more open to the idea that my skin issues were in fact a reaction to gluten, even if she isn’t sold on the idea of it being the fault of the eyeshadow.

Though we may not know conclusively the relation between glutenous beauty products and skin issues, we can use reason and understanding to form a hypothesis. From there, we can embark on the path to conclusive knowledge.

– Kaitlin Puccio

So, you went gluten-free. But now your morning bagel is on the “forbidden” list and you only have a leftover sandwich in your fridge for lunch. Plus, you spent 30 minutes of your break reading food labels at the grocery store but didn’t buy anything because you left your nutritionist’s list of “additional words that mean gluten” on your desk at your other job. And, it’s Monday.

Two years ago, this was me. At the time I was working three jobs, so I was happy to eat anything somewhat healthy that was quick and easy. When I had to go gluten-free, I struggled. It would take time to learn what foods were safe. It would take effort to reconfigure my meal plan. Time and effort that I had reserved for my three jobs.

My standards for “quick and easy” were still high, but I knew I’d have to put more effort into preparing food for the week ahead of time. I needed to learn to use the little time I had more efficiently.

It would have been easy for me to buy frozen and pre-packaged gluten-free meals for breakfast, lunch, and dinner. But I wanted a healthier, less-expensive option. And I wanted to make sure that I wasn’t just cutting gluten, but was increasing my intake of certain other foods to ensure I was getting the proper nutrients.

It seemed like a tall order to be gluten-free and eat convenient, inexpensive, healthy meals at the same time. But it had to be done. If I wanted to spend no more energy thinking about what I’d eat the next day than I spent on thinking about it when I wasn’t gluten-free, I’d have to have a plan.

Going gluten-free can cost you time, money, and health. But it doesn’t have to. This is how I managed.

1) Don’t plan to plan. Actually plan.

In the first few weeks of being gluten-free I didn’t have a plan, which cost me a lot of time.

Say you know that you’ll need to pack lunch five days a week. Instead of wondering every morning what to take for lunch, create next week’s meal plan over the weekend. That way, you don’t need to scramble to find something Monday morning, which could leave you late for work and hungry at lunch. Not to mention the time you’ll spend thinking about how you should come up with a plan.

Thoughts like that waste more time and energy than we realize. Especially since every day you’re affected by not having a plan, you’ll likely have the same thought all over again about how you should come up with a plan. Think it, do it.

2) Prepare to be ready.

Planning and preparing are different. In order to be ready for the week, you’ll need to prepare the meals that you’ve planned for that week. If you cook in bulk, you’ll have enough food to make portable, healthy meals for the whole week.

Cooking this way also means cooking only once a week, so heavy cleaning from cooking only needs to be done once a week. Even if it takes an hour from start to finish, which seems like a lot of time, that’s only one hour out of 168 hours in a week.

Planning, preparing, and cooking in bulk are popular ideas in general. But when you’re gluten-free it helps ensure that you’ll have something to eat, even if you’re running out the door late in the morning. Just grabbing a $1 slice of pizza for lunch isn’t an option anymore, and although many restaurants and cafes do offer some gluten-free options, they usually come with an extra charge — and possibly some extra calories. Spending extra money to eat less healthy? Nay!

3) Label-gazing is a waste of time.

A celiac diagnosis can be overwhelming. So much so that you feel paralyzed, have no idea what to eat, and fill up on products that are labeled “gluten-free” because they’re safe. You don’t have the mental energy to deal with figuring out what foods are gluten-free if they’re not labeled. That’s why planning and preparing are so important — it forces you to organize your mind in the midst of celiac turmoil.

It’s also important to recognize that even though foods may be labeled “gluten-free,” there may still be a disclaimer on the packaging that says it’s manufactured on equipment that also processes wheat. Depending on how sensitive you are to gluten, you might not be getting the full benefits of a gluten-free diet if you’re filling up on these cross-contaminated “gluten-free” foods.

You could spend a lot of time in the grocery store looking for labels/disclaimers/allergen information. It is indeed important to read the labels on the manufactured gluten-free foods you buy. But for a healthier lifestyle, the products you’ll purchase most for your daily meals would be naturally gluten-free and not processed (so no risk of being processed in a plant that also processes wheat).

Fruits, vegetables, nuts, meats, cheeses, rice, beans, fish, etc. (unless you have other dietary restrictions)… These are some foods I turned to most when I started planning and preparing: naturally gluten-free foods. No risk of gluten, no added cost, no added calories/sugars/carbs, etc. And no extra time spent reading labels.

You want to have enough to eat, not get bored with what you’re eating, not spend a lot of time or energy figuring out what to eat or cooking, not spend a lot of money, and eat healthy, convenient, portable foods. And be gluten-free. Simple, right?

It can be, if you spend wisely.

– Kaitlin Puccio

While going gluten-free is a medical treatment for many, there’s no denying that it’s also become a fad. You may have tried going gluten-free for a variety of reasons apart from medical — for example, seeking a smaller waistline, more energy, or clearer skin. Didn’t work? Here are a few possible reasons why.

1) A gluten-free diet isn’t necessarily a “diet.”

Eating gluten-free is a lifestyle for those with celiac disease. The treatment for a celiac diagnosis is a lifelong gluten-free diet. But “diet” in that case isn’t what we think of when we usually think of going on a diet. There are multiple definitions. A diet can be defined as “food and drink regularly provided or consumed,” “the kind and amount of food prescribed for a person or animal for a specific reason,” or “a regimen of eating and drinking sparingly so as to reduce one’s weight.” The idea of dieting for weight loss (the classic idea of dieting) and a prescription diet (the kind of diet that celiacs must follow) are distinctly different.

If you do have any type of gluten intolerance and are prescribed a gluten-free diet, you may actually gain weight over time. Eating gluten while intolerant can cause damage to your intestines, resulting in your body not properly absorbing nutrients. Thus, celiacs sometimes can’t gain weight. Once you reverse the damage and get your body functioning properly again, you’ll be able to gain healthy weight.

For non-celiacs, the problem with going gluten-free to reduce weight lies in the many gluten-free options there are from which to choose — cakes, muffins, breads — all available in gluten-free form. If you are still eating these things regularly, you won’t lose weight just because they’re gluten-free. You might even gain some unwanted pounds depending on what’s used in place of gluten — a problem shared by both celiacs and non-celiacs.

2) Gluten-free eating doesn’t automatically equate to being energized.

Depression and fatigue are common symptoms of celiac disease (… though sometimes it seems that everything is a possible symptom of celiac disease; and even though there are over 300 symptoms, some people are asymptomatic).

For celiacs, going gluten-free may lessen depression and fatigue, as it did for me, but it’s probably not going to give you a runner’s high. I was lethargic and thin from years of malabsorption of nutrients, and it took time for me to build up my energy after I went gluten-free. It was only the first step in increasing my overall health, followed by building lean muscle and stamina. No longer do I feel tired and bloated after eating, which means that I have the energy to exercise (which in turn energizes me), and the mental clarity to have the required discipline.

Similarly, I was recently told by a close friend that he tested negative for celiac disease but feels better when he eats gluten-free. Without those debilitating food comas, he has the energy to exercise. Perhaps feeling better when you don’t eat gluten is a sign that you might develop celiac disease later in life if you continue to eat gluten — a result of constant exposure to something, like getting too much sun. Whether this is possible is sure to continue being researched, regardless of what current studies might show.

3) Speaking of getting too much sun…

So you thought all your skin problems and acne would go away with the end of gluten, if not with the end of adolescence.

While a gluten-free diet may help from the inside, avoiding beauty/health products containing gluten helps from the outside. Toothpaste, makeup, shampoo — these, and more, can all contain gluten. For celiacs, if your makeup isn’t gluten free, even though you went on a gluten-free diet, you might still notice some skin issues, like acne from your facewash, rosacea, or even scaliness around your eyelids from eyeshadow.

Although eating gluten-free does not automatically result in improvements to your waistline, energy level, or skin, it can certainly be a springboard. And for celiacs, the benefits of a completely gluten-free lifestyle, inside and out, are undeniable.

– Kaitlin Puccio

Recently I was in the hospital for a small procedure, which required anesthesia. Upon my arrival, I was asked about any allergies I have, at which point I disclosed my intolerance to gluten. A large, red bracelet was secured prominently on my wrist, the word “GLUTEN” in bold, black writing. This indicates to the doctors and hospital staff that I should not be given “gluten” under any circumstances. Comfortably nestled in my pristine hospital bed, I feel the anesthesia quickly take hold.

Procedure: Over and successful! As I awake from my induced slumber, a nurse asks me if I’d like water. I accept. Then she asks, “Do you want a cookie?”

I look up. Perhaps I am still foggy-brained from the anesthesia and had been dreaming of a land where I could eat cookies without worry. “A cookie?” I ask her, to be sure. She waits patiently for me to answer, earnest in her desire to provide me with the baked wheat product. I look at my red bracelet.  It screams patiently at the nurse amidst the hospital whites, yearning for a glance in its direction. I speak on its behalf. “No thank you, I’m gluten-free.” Should I also tell her I’m in the hospital for a celiac-related procedure?

She giggles.

“Oh! Then no cookie for you!” And she walks away.

When I regained full control of my mental state, I wondered what might have happened if I had not been awake enough to comprehend the situation, and accepted the cookie. Would she have looked at the bracelet then, or would I have gone on to eat the very thing that landed me in the hospital in the first place?

It’s like looking for the mayo in the fridge for ten minutes when, in fact, you picked it up and moved it aside to look for it. Wheat is ubiquitous. It’s existence is normal, natural, not something that we consciously consider. Even though the nurse may have known that I was gluten-free, it may not have registered with her because “cookie” doesn’t immediately bring to mind “gluten” to those who do not suffer from celiac.

This is one of the dangers of wheat–it fits our existence like flesh, and is easy to overlook. This is also why educating chefs, nurses, servers, etc. is so important. The practice of consciously considering gluten is different than passively knowing facts about gluten consumption and celiac disease. If a chef trains her mind to see “GLUTEN” in bold, black letters when she sees soy sauce, she may not accidentally offer it to a gluten-free customer along with the sushi rolls with which it so naturally pairs.

Awareness is key. Even if it is a pain in the gut.

– Kaitlin Puccio

Waitress: You’re gluten-free?

Me: That’s right.
Waitress: So no potatoes.

Huh?

As the waitress jotted down “no potatoes” on her notepad, I wondered how she came to that conclusion. Perhaps the potatoes were in some gravy that was made with wheat. Or maybe… maybe she thought that “gluten-free” meant “carb-free,” since so many foods that are glutenous are foods like bread and pasta.

I proceeded with caution: “Could you ask the chef if the potatoes are gluten-free?”

I felt more confident that the chef would know what went into making the potatoes. Turns out, they were completely gluten-free. So, yes potatoes.

One month earlier…

Me: Also, could you tell the chef I’m gluten-free?
Waiter: Absolutely. Everything you ordered is gluten-free, but I’ll make a note just in case. Would you like a side of potatoes instead of the toast?
Me: Are the potatoes gluten-free?
Waiter: No, they’re not.
Me: … Then no… no potatoes.

What is it about potatoes?

A few weeks ago, I informed another waiter that I was gluten-free. His response: “Is it an allergy?”

His question got me thinking. If he hadn’t asked, or if I had responded “no, it’s a lifestyle choice,” perhaps the chef would not have been so careful with things like cross-contamination. But I explained that my gluten-free ways were due to a medical need, and my meal was made completely gluten- and cross-contamination-free. This waiter’s question to me indicated a deeper understanding of celiac and gluten-intolerance.

What if all this time the waiters and waitresses taking my order didn’t take my gluten-free needs as seriously because I hadn’t specified that I was medically gluten-free? Was all that double-checking futile without specifying that cross-contamination is just as harmful?

For some, cross-contamination might not be as harmful as it is to others. But if someone says “I’m gluten-free,” whose responsibility is it to make sure that “gluten-free” means “cross-contamination-free” to the chef?

The immediate answer is that if cross-contamination is an issue, it’s best to specify that when ordering food to eliminate any doubt.

The long-term answer is education and awareness. Particularly in the food service industry, it’s necessary for people to not only be aware of what gluten is, how it’s harmful, etc., but it’s also necessary to ask questions if there is something that they haven’t been made aware of. Many people with celiac disease would agree that they’d rather a server say, “I don’t know but I will find out,” than have a server say “Yes, it’s gluten-free,” when that server thinks the meal is gluten-free because there are no potatoes.

In fact, EU food information regulations state that allergen information must be available upon request for non-prepackaged food and drinks (e.g. in restaurants and bakeries). In an effort to increase understanding and awareness, including understanding unintentional allergens (e.g., cross-contamination), courses and workshops are available to food business operators, including: current and incoming rules and legislation; the effects that allergies have in the body; considerations of allergies in the factory; how allergenic ingredients should be displayed on the label; identifying allergens in example of dishes in the restaurant; and how food businesses should be providing consumers with allergen information about the non-prepacked food they serve.

It’s understandable that without being told that cross-contamination, for example, can be harmful to celiacs, a waiter or waitress might not know to disclose that information. By providing those in the food service industry with allergen education, the EU is potentially making un-prepackaged food and drinks safer to consume for those suffering from celiac.

How ’bout them potatoes.

– Kaitlin Puccio

As a pasta-loving Italian, eliminating gluten from my diet at the recommendation of my doctor seemed to leave me with extremely limited food options. However, compelled by my compounding fatigue and stomachaches, I waved the white (and red and green) flag, and embarked on my gluten-free adventure, eager for more energy and less pain.

I didn’t realize that the benefits of a gluten-free diet would contribute to the improvement of other aspects of my life.

1) Feeling less chronically fatigued was one of the most noticeable improvements that resulted from my eating gluten-free. Prior to altering my diet, I would sleep sometimes as long as 15 hours per night, and would still be too tired to do much the following day. A likely result of intestinal damage causing malabsorption of nutrients.

A few months after I started eating gluten-free, I noticed that I needed less sleep to function properly and was able to think more clearly.

2) At the same time I was sleeping 15 hours a night and lazing around during the day, I was feeling down. I had little motivation to accomplish even small tasks.

What I didn’t know was that 90 percent of the body’s serotonin, which is responsible for mood elevation, and 50 percent of the body’s dopamine, which is important for motivation and attention, lies in our gut. So if my digestive tract is damaged and off-kilter, my levels of serotonin and dopamine are off, which would directly affect my mood.

After I started eating gluten-free, I slowly regained my ability, and desire, to function properly.

3) Years before I stopped eating foods containing gluten, I nearly stopped eating everything. I recall one particular day during college when I ordered my favorite sandwich of tomato and fresh mozzarella on ciabatta. I was hungry after a long morning of classes, and while I was excited to have lunch with a group of friends, I may have been more excited about the sandwich that I was about to enjoy. But after one bite, I put it down.

Something about it wasn’t right. I got the same feeling that I used to get as a child after eating too many doughnut holes at Halloween parties — I couldn’t even think about eating doughnuts for months without feeling sick.

I had, at that time, recently noticed that no matter how hungry I felt, I couldn’t stomach certain foods. I never imagined that my beloved tomato mozzarella on ciabatta would be one of those foods.

I threw out the sandwich, my hunger replaced with nausea, and went to my next class.

That night, ravenous, I ate two slices of pizza. Long before I learned that nausea is a gastrointestinal symptom of celiac disease.

4) Combining my newfound energy with my renewed ability to stomach the foods that I wanted to eat, socializing became a much easier and more regular part of my week. No longer was I too tired to go out when friends called, and no longer did I need to cut the night short because my stomach pains were too much to handle.

I’d always wondered how people would go out to dinner and then hit a club without feeling too full and bloated to dance. When I stopped eating foods containing gluten at dinner, I realized how.

If you’re feeling like I felt before going gluten-free, you may want to check in with your doctor — even if you don’t feel like it — and ask if it’s possible that you have celiac disease or are otherwise gluten-intolerant.

– Kaitlin Puccio

When my doctor first suggested that I go on a gluten-free diet, I was overwhelmed. I didn’t know what exactly gluten was, but it seemed to be in almost everything. Thoughts of running a vineyard in pasta-plentiful Italy turned to sour grapes. My shoe budget was reassigned to picking up the extra cost of gluten-free food. My favorite cookies: extradited to someone else’s pantry.

If you’re just starting out and are feeling the same way I was, here are some misconceptions I had about being gluten-free and what I’ve learned is the truth.

1) It’s a bad idea to vacation or live in Italy.

Think your meal options are absurdly limited in Italy? Not so. There is an entire Italian Celiac Association (Associazione Italiana Celiachia) dedicated to gluten-free living.

In Italy, all children are tested for celiac disease by age 6, so even if they’re asymptomatic, the disease is caught early. One in 100 Italians are living with celiac disease. This means 1 percent of Italians are gluten-free and have been for most of their lives (assuming those who have celiac eat gluten-free). One percent may seem like a small number, but that translates to more than 600,000 people who are living gluten-free in Italy.

Italians with celiac disease receive an allowance for gluten-free food, and the AIC continues to raise awareness and inform the public about progress in celiac disease research. It seems that Italy has a pretty good grasp of the needs of celiacs and absolutely has gluten-free food available to celiacs living and vacationing in Italy.

2) My shoe budget will forever be put toward the extra cost of gluten-free food.

Gluten-free foods tend to be more expensive. Don’t be surprised if a pizza shop that offers gluten-free costs extra for a slice or if your grocery bill suddenly seems fat.

Recently, while being interviewed on the U.K.-based GFree Radio Show, I learned that one argument for confirming celiac disease (as opposed to, for example, getting a blood test but not following through with the biopsy), is that there are medical benefits in the U.K. for confirmed celiacs. British celiac patients can receive gluten-free food and mixes at a discounted price as part of their prescription for the gluten-free diet, according to the Celiac Disease Foundation.

And it’s not just the U.K. Argentina, Canada, Ireland, and the U.S. have all implemented policies to offset the nutritional costs of being gluten-free. Argentinian health care providers are required to cover the cost of gluten-free flours and mixes, as the only known effective treatment for celiac is a lifelong gluten-free diet. Those living with celiac in Canada, Ireland, and the U.S. can receive tax deductions for the extra cost of gluten-free food. For example, if Brand Pasta costs X and the gluten-free version of Brand Pasta costs Y, Y-X will be tax deductible. The U.S. even has policies regarding tax deductions for associated travel expenses.

3) Gluten-free foods? Gross.

False! There are companies who understand that being gluten-free shouldn’t mean sacrificing taste or options, and they’ve created products to reflect this. For example, some of my favorites to indulge in are Udi’s Gluten Free and Glutino, which work to provide not only gluten-free foods, but gluten-free foods that you actually want to eat. I’ve served snacks from both Udi’s and Glutino to non-gluten-free eaters, and the reaction is always the same mixture of shock and delight at how delicious they are. They offer foods that I’d eat even if I didn’t need to be on a gluten-free diet.

My misconceptions left me grumpy about being gluten-free, until I learned the truth.

– Kaitlin Puccio

 

There is much debate around the subject of gluten. Researchers continue to publish studies with new findings, and people continue to adopt a gluten-free diet — both those who have been tested for celiac disease and those who haven’t. For those who have been tested and diagnosed, the seriousness of their disease is sometimes scoffed at or looked at with skepticism due to the fact that their diet is not only a medical necessity but also has become a fad. And for those who haven’t been tested but adopt a gluten-free diet anyway, there are varying degrees of annoyance expressed at their choice.

My Experience

My blood test indicated celiac disease, but I did not go through with the small intestinal biopsy to confirm what the blood test suggested. At the direction of my doctor and nutritionist, I cut out gluten and added different foods to my diet to ensure that I wasn’t eliminating essential nutrients, and I indeed felt much better. I don’t feel the need for the biopsy to tell me whether I do or do not have celiac disease. If I do, I’m already eating gluten-free. If I don’t, I’m still going to eat gluten-free because of how much better I feel doing so.

If you feel better when you don’t eat gluten, then don’t eat gluten.

For many gluten-free eaters who have not been diagnosed with celiac disease, this is a statement, and a choice, that is met with much criticism.

“‘Gluten intolerance’ is not a real thing.” (Or, a variant: “There is no such thing as ‘non-celiac gluten sensitivity.'”)

“You haven’t been tested; you’re just jumping on the bandwagon.”

“Wheat allergies aren’t as bad as celiac disease.”

Etc.

Gluten Intolerance Is Not A Real Thing

I’ll start with the first: “‘Gluten intolerance’ is not a real thing.” If someone is intolerant to gluten, it means, by definition, that he or she is unable to take gluten into the body without becoming sick. Regardless of whether “gluten intolerance” is or isn’t also used as a medical phrase, its idea — what it indicates — is, indeed, a very real thing.

Gluten intolerance = the inability to ingest gluten without becoming sick.

So: If I am gluten-intolerant and I ingest gluten, then I will become sick.

True: If I ingest gluten, then I become sick.

True: I am unable to ingest gluten without becoming sick.

From this, I deduce that I am gluten-intolerant.

If ingesting gluten makes me feel sick, then I’m not going to ingest gluten.

Those who have been diagnosed with celiac disease are inherently gluten-intolerant, because they are unable to take gluten into their body without becoming sick. This statement does not necessitate that those who have not been diagnosed with celiac disease cannot be gluten-intolerant. (Nor does this statement mean that celiac disease and gluten sensitivity/intolerance are the same thing. Celiacs show intestinal damage, while those with gluten intolerance do not — yet.)

You Haven’t Been Tested; You’re Just Jumping On The Bandwagon

With that, we arrive at the second: “You haven’t been tested, you’re just jumping on the bandwagon.” Perhaps this is true for some, but there’s plenty of room on the bandwagon. Sure, fads can get annoying, but it is false that because going gluten-free is a fad, it’s not also a serious medical need. As far as those who are gluten-free not just to jump on the bandwagon, again: I eat gluten, I feel sick. I don’t eat gluten, I don’t feel sick. If I decide at this point to adopt a gluten-free diet without getting tested, it’s because I’ve come to a logical conclusion. (But note: For those who do plan to get a blood test, you need to keep eating gluten beforehand so that your test yields accurate results.)

Wheat Allergies Aren’t As Bad As Celiac Disease

To the point that “wheat allergies aren’t as bad as celiac disease,” everyone has their own experience. This may be true in some cases, and false in others. Because of this, as a generalization, it is inaccurate. There are different severities of gluten intolerance, many similarities between allergies and celiac disease, and also many differences. But whether I am allergic to wheat, or have celiac disease, I’m going to stay away from whatever makes me feel sick.

Gluten-Free Intolerance

The surprising thing is not that new research sometimes brings older research into question, or that there is still much to learn, or that the language we use to discuss gluten intolerance will evolve, as language does. The surprising thing is that gluten intolerance has spawned gluten-free intolerance in some.

To me, and possibly others who cannot tolerate gluten, it doesn’t matter much whether it’s a fad, or if “gluten intolerance” is a proper scientific term, or if my declining the bread basket at a dinner vexes someone else at the table. What does matter to me, fundamentally, is that I feel better when I don’t eat gluten. So I don’t eat gluten. Do many of us who are gluten-free want to educate ourselves further? Yes. Do many of us want to know for sure what type of intolerance we have, whether it’s celiac disease, a wheat allergy, gluten sensitivity, or something else? Yes. Should we anticipate that there will be new findings that may call into question the current, most convincing studies? Yes.

I’m open to being persuaded. But in the meantime, I’ll listen to my gut.

– Kaitlin Puccio

 

A gluten sensitivity or wheat allergy is just like a peanut allergy, but the social situations involving gluten seem to be much different than those involving peanuts. No one would ever say “just try one cashew” to someone with a severe nut allergy, so why do they say “just take one bite” to people with wheat allergies?

Even though people are becoming more educated about gluten sensitivity, there are still plenty of people for whom “gluten” is still mysterious. Here are a few tips on how to act when you’re gluten-free around someone who’s not, and when you’re not gluten-free around someone who is, to keep the peace.

1) If you’re going to someone’s house for dinner and you’re gluten-free, tell them ahead of time, so they’re not surprised when you don’t touch the main course.

It may sound obvious, but if eating gluten-free has become second nature to you, this simple courtesy can very easily slip your mind.

2) If someone brings a dessert that you can’t eat when they arrive at your house, don’t remind them that you’re gluten-free, even if you can’t believe they don’t know by now.

Someone who is not gluten-free may not know that brownies aren’t either, because they don’t need to know.

3) Don’t force everyone around you to eat gluten-free, even if you think they might have a gluten sensitivity and don’t know it.

It’s perfectly fine to share that you had similar symptoms before you changed your diet. But then it’s up to them to decide whether to check with their doctor to see if a gluten-free diet is right for them.

4) Call restaurants ahead of time to find out about gluten-free options so that you aren’t surprised when their entire menu is made with some sort of wheat.

It will be uncomfortable for everyone when you’re friends are all eating their tortillas, and you’re eating the lemon from your water.

5) Don’t be surprised if the people you are talking to are tired of hearing the phrase “gluten-free.”

As much as it is a necessary diet for a serious health issue, it’s also become somewhat of a fad diet, and can start to feel like an overplayed song on the radio.

But on the other hand…

1) No, your gluten-free friend likely cannot “just have a taste,” and yes, it can be that bad if he or she does.

Depending on the severity of the gluten intolerance, some people can indeed try small bites of foods that are not gluten-free, but if someone declines, it’s highly likely that even a small taste will cause very serious issues.

2) We told you that we are gluten-free before going to your house for dinner, and you graciously made an amazing side salad to accompany the pork dish.

You were so careful not to put croutons on our plate, and we really appreciate it. But believe us when we say there is gluten in that dressing. It’s not that we don’t appreciate all the extra care you’ve taken in preparing the meal. We understand that there is gluten hidden in places that even amaze us, but we really need you to leave off the dressing, even if the salad won’t be complete without it.

3) Don’t keep asking what might happen if we eat that breadstick.

Bad things.

4) Yes we may have gained/lost weight since going on a gluten-free diet, but don’t be appalled by the 10-pound difference.

If we’ve lost weight, it’s because we’ve stopped eating all those carb-filled foods like pasta and bread. And if we’ve gained weight, it’s because my body has healed and is finally absorbing the proper nutrients. Even though talking about a diet opens the door to talking about weight, we don’t need to hear about how we’ve “put on some pounds” or are “wasting away to nothing.” We need to disclose our diet because it’s like dealing with a food allergy.

5) You’re absolutely right when you say that we’re picky eaters.

We need to be! But don’t be offended and say we’re being picky if we decline your tiramisu. We are not choosing not to eat it to spite you for some reason. We’re choosing not to eat it because that’s the only choice we have.

– The Editors