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“She might be lactose intolerant.” My mother had taken me to a pediatrician to figure out why my stomach hurt every morning after a breakfast of cereal and milk. We eliminated milk, and the problem persisted.

“She’s just nervous to go to school.” This made no sense to my mother. On the contrary, I liked school.

“You’re losing weight,” I hear in high school. I know this, but I don’t know why.

Years later, home from college for winter break, I see a dermatologist. “It’s just stress,” I am told when I point out the scaly patches of skin around my eyes.

When I start working after graduation, I notice how much I am sleeping on the weekends and yet how exhausted I feel.

I see another doctor, who says I suffer from chronic fatigue. Unsatisfied, I monitor my symptoms—stomach pain, bloating, exhaustion, brain fog, moodiness, weight loss—and when they occur. I go back to the doctor and request a blood test to screen for celiac, which came back overwhelmingly indicative of the disease.

After a few weeks of visiting my favorite restaurants and bakeries and having one last bite of the glutenous foods I once cherished, I completely cut out gluten from my diet.

Girl feels sick, girl treats illness, girl feels better. End of story, right?

Dealing with celiac disease sometimes feels like being in a video game. Level 1 challenge: Unlock the world of gluten-free by identifying and eliminating the gluten-containing monsters.  Level 2 challenge: Spot the cross-contamination and rescue the village of celiacs from being glutened (“village” here really just refers to me, but for illustrative purposes, I’ll go with it). Level 3 challenge: Obtain stars by reconciling how to interact with others without calling attention to your food restrictions, or risk losing your (social) life.

I’m still at Level 3. Much of socializing revolves around food, and while it’s perfectly acceptable to ask if something is gluten-free (or nut-free, or vegan, etc.), it doesn’t end there. I’ve learned that in restaurants, it’s not enough to ask if something is gluten-free. “Gluten-free,” though there is a precise definition, might mean something different to different people. A bakery I went into recently offered gluten-free options in a separate case, prepared in a separate kitchen, but when I ordered a gluten-free cupcake for myself and a slice of chocolate cake for a friend, they were placed in the same to-go box, smushed up against each other like a cheek on a window.

Socializing while managing a food intolerance can be especially difficult when forming new relationships. While a new friend might not be put off at all by your dietary restrictions, it is not uncommon to want to hide them anyway so that you don’t come off as “that person,” or high maintenance, or otherwise not “chill.” In reality, much of this insecurity is baseless, and few people will actually be perturbed by your gluten-freedom. You may have to answer a few questions, but then you move on. You order what you can eat, and if you don’t want to ask 300 questions about how something is cooked, order something simple. Still ask the necessary questions, but if you don’t really need the fries and are worried about asking too many questions, don’t order them and you can avoid the cross-contamination conversation.

Recently I was invited to a new friend’s house for a dinner party. I told her I would be happy to attend, but have celiac disease so I can’t eat anything that has gluten in it. I then said that since this can be a burdensome dietary restriction to accommodate, I would be happy to bring my own meal. At first I thought this might be strange. I imagined showing up to pristine white plates filled with delicious meats and gravies and sides, and finding my plateless seat, whipping out my plastic container of lukewarm, leftover gluten-free pasta, and eating right out of the container while avoiding the glances of those around me. Then I learned that someone else who would be attending has celiac disease as well, and that she was only comfortable attending because I had offered to bring my own meal first, and she then felt that she could do the same.

Every situation will be different, but they become easier to manage with more experience. If I had been diagnosed with celiac disease as a child, I wouldn’t have felt so sick growing up, but I would have been faced with a different set of challenges. It can be hard for children to understand why they suddenly can’t eat pizza with their friends, or why they have to bring their own special cake to birthday parties. This is what motivated me to write “The Adventures of Celia Kaye.” As hard as it was for me to adjust to celiac disease as an adult, it must be that much harder for kids who just want to fit in. The character Celia Kaye is someone whom kids can look up to, who might help them understand a little bit more about food restrictions, and how to have fun with them rather than be stifled by them.

Dealing with the aftermath of a celiac diagnosis can be challenging. It becomes easier, however, when I recall how I used to feel after eating gluten, and how much better I feel physically and mentally after cutting it out. If I have to figure out how to manage a few social situations that otherwise wouldn’t even cross my mind, that’s fine. At least I can socialize now instead of always leaving early because I don’t feel well, or not going out at all because I’m exhausted. It’s become easier for me to look at foods that I used to love and not wish that I could still have them. I know how sick they made me feel, so I don’t feel compelled to eat them. And while celiac disease can have serious consequences if left untreated, if I have to have a disease, I’m fine with that disease being celiac because it’s treatable with a diet change. Yes, it can be hard to trust that food is safe when prepared by others, and others are surely affected more seriously than I am by cross-contamination, but in my experience celiac disease becomes easier to manage with every new situation. I wonder what’s in store at Level 4.

– Kaitlin Puccio

This post was originally published on The Baby Spot.

It all fell into place when my doctor asked me if I lost weight after going gluten-free. Two distinct experiences popped into my head: one when I was in high school, and one when I was in college.

I used to bring a sandwich with me for lunch every day in high school. But eventually, even though I was hungry by the time lunch rolled around, I couldn’t stomach it. I tried to eat it—slowly, breaking off smaller and smaller pieces because I felt less sick if I only had to swallow small amounts of food at a time. I didn’t notice what was happening until weeks had passed. I just kept thinking that the sick feeling would go away, and tried to ignore it.

After school I usually had a snack. One afternoon I was feeling particularly ravenous, so I made myself two waffles. I wasn’t satisfied, so I made two more. Why I thought I could double my usual waffle intake I do not know, but I did, and I finished those two waffles also. But I didn’t feel full. I found a leftover pancake in the fridge and ate that too. It was more fear that made me stop eating than actually feeling full. Four waffles and a pancake? Something was wrong. That’s when I realized how little I had been eating in the previous weeks. That sick feeling never went away.

I was losing weight. Often I wanted to eat, but couldn’t. A well-meaning but ill-informed teacher of mine accused me of being anorexic. That certainly didn’t help things.

The sick feeling did eventually go away. I don’t remember when, or how. But it came back one day, years later, in college.

I used to have tomato and fresh mozzarella on ciabatta bread in the NYU dining hall whenever I could. I loved that sandwich. Everything was fresh and flavorful. Even the texture of the ciabatta was perfect. I looked forward to that sandwich whenever I knew I would be eating on campus.

One afternoon I met a friend for lunch. On campus! Tomato mozzarella ciabatta! I ordered, paid, sat down, and ripped open the tinfoil that stood between me and my sandwich. The first bite.

As I was chewing, that sick feeling came back. All at once. I put the sandwich down, thinking it would pass. Nothing would come between me and my sandwich. But I didn’t take another bite. I felt too sick. Thirty minutes later, as I walked to class, hungry, I wondered what had happened.

I didn’t connect these experiences until that day in the doctor’s office years later, after having been diagnosed with celiac disease and eliminating gluten from my diet. My beloved sandwiches had been making me sick in high school, and they had been making me sick in college. Sick to the point where I couldn’t eat. Sick to the point where my already thin frame shrank.

And it makes me wonder: How many people are misdiagnosed with eating disorders who are, in reality, affected in this way by celiac disease? How many people develop eating disorders because of how food makes them feel—physically at first, and then mentally, when it stops making sense?

I was speaking with a friend the other day who commented that “wheat is just so bad for you.” For me personally, yes, it is bad. Bad things happen to my insides when I consume gluten, the protein found in wheat and other grains such as rye and barley. For celiacs, my friend’s comment couldn’t be truer. But to hear my friend say that wheat in general is bad struck me as strange.

As I assessed my friend’s claim, I noticed three things about the way our society functions that I suspected might contribute to the perplexing way my friend thinks about wheat.

1) Blogs provide the freedom to publish just about anything.

I could easily publish anything without running them by editors or fact-checkers. I could write a post that is a list of “healthy foods that are really bad for you,” and I could write one about “demonized foods that are actually healthy.” I could put wheat on both lists and publish them as if they were fact.

When I started writing about gluten sensitivity, I made a conscious decision to write about my experience. And though experience varies for everyone, in many cases the experiences I describe are deemed some variant of “false” by some readers who perhaps had an experience that differs from my own. Can experiences be said to be definitively true or false? No. Does a new logic apply to blogs that allows experience to be objective rather than subjective? No.

When is the last time you googled something and said to yourself “I hope there’s something written about this online”? It’s not a thought that crosses my mind when I start typing in the search bar. I just assume that someone “out there” will have information on whatever topic I’m searching.

It occurred to me that because there is so much unfiltered information available online, perhaps we have developed our own internal filters. Some articles or posts might make factual claims that are in actuality unsupported by research, but they can make those claims unchecked because of the ease of Internet publishing. We read articles and sort them into two mental folders: things we believe, and things we don’t believe (let’s disregard the “I don’t know” folder for now). Those mental folders, however, don’t always correspond to what is actually true or false.

Did my friend read a compelling but ultimately unsupported argument for why wheat is bad? Did she read an experiential account of the consequences of ingesting wheat for a celiac? An anecdote of giving up gluten and shedding 15 pounds? Or maybe just an intriguing but misleading headline?

2) Provocative or catchy headlines are sometimes the only part of the article that is read, but they don’t necessarily sum up the article.

Look at the title of this article. “What’s So Bad About Wheat” might mislead you into thinking that the article is about all the ways wheat is bad for you. If you only read the headline, that might be your takeaway. You would miss the idea that “what’s so bad about wheat” is the question I asked after my friend made the claim that wheat is “just so bad for you.”

As I mentioned above, there is a lot of information online. A lot to read, a lot to retain. Say I’m reading an article online and the title of another article in the sidebar catches my eye. If it sounds better than what I’m currently reading, I’ll abandon my current article and click on it. Short attention span? Perhaps. Clickbait? Likely.

I happen to know that my friend weighs 10 pounds more than her goal weight. How long does she spend researching, talking to trusted dietitians, nutritionists, her fitness coach? Not very long. It’s easier for her to go online and search “five miracle exercises to lose every inch of belly fat in five days.” A few articles will pop up; she’ll click on the first. Because it aligns with her wish to lose 10 pounds as soon as possible, she’ll bookmark the page. She’s hooked on the idea of it only taking five days because of her desire for instant gratification. She is willing to accept the first, simplest solution, because she wants it to be true.

So if she reads a headline that says, “I stopped eating wheat and lost 15 pounds,” it seems like a fairly straightforward cause-effect and she skips the article, retaining only the headline. Her takeaway: Stop eating wheat and lose weight. But what if in the article the author specifies that he didn’t replace the wheat-containing sweets he used to eat with gluten-free sweets? If she had read that, my friend may have considered that the cause of the weight loss was likely a combination of cutting down on fat, sugar, and carbs.

3) We seem to always need a group to condemn or praise.

Has there been a time in recent history when there was no popular diet to follow? (Down with carbs! No, down with fat! No, down with wheat!) Or when there was no miracle superfood that was the new very best thing to eat? (Avocado is king! No, kale is king! No wait, coconut oil is king!)

Would we create groups to condemn if there were no “bad” groups, like we might pick fights when we’re bored? What would happen if there were no foods to condemn?

Over the years, different foods have been deemed “bad for you” and “good for you” at different times. By cutting down tremendously or eliminating fat from our diets, we stocked up on carb-rich foods. Then carbs “became” unhealthy, and fruits took a fall alongside carbs. Now wheat is experiencing it’s own fall from the idea that whole wheat = healthy, not surprisingly on the heels of an increased awareness of celiac disease.

The idea of “everything in moderation” seems pretty sensible, but it doesn’t seem to work for us. (For celiacs, it would be “everything in moderation except gluten.” For those with nut allergies: everything in moderation except nuts, etc.) Perhaps because everything in moderation doesn’t seem “active” enough for us. It seems to be the case that if my friend wants to lose weight, she wants something real that she can grasp, some specific food group that she can demonize and eliminate because she will feel that she is actively dieting her way to weight loss. If there were no “bad” foods, she might wonder: “Then why am I overweight?” Portion control seems insufficient as a direct cause of weight loss. Perhaps because then it would be her own fault if she didn’t lose weight: It’s not that the brownie was bad, it was that she had two of them. It puts the blame on her.

How exactly my friend deduced that wheat is bad from everything she consumed (mentally as well as physically), I cannot know. But I suspect it is a combination of the availability of unchecked information on the internet, sexy headlines, and the need for a dietary scapegoat.

– Kaitlin Puccio

Ever eaten food that was supposedly gluten-free, but you still felt terrible afterward? This is one of the reasons I have chosen to stay away from foods labeled “gluten-free,” and instead eat foods that are naturally gluten-free. But I can only eat so many vegetables without feeling like I’m about to start sprouting broccoli from my ears and growing leafy-green fingers.

Luckily, my woes are about to be buried deep in the soil. According to the National Foundation for Celiac Awareness, today the FDA released a statement defining the term “gluten-free,” which sets a universal standard that celiacs can trust to help them (us) maintain a truly gluten-free diet.

Gluten-free food is now defined by the FDA as food that is naturally gluten-free (my favorite), does not contain any ingredient that contains gluten, was made from a grain containing gluten that has not been processed to remove the gluten, or has been processed in this way, but if in using that ingredient, the food still contains 20 parts per million (a very small amount of contaminant) or more gluten. Food containing any gluten that just won’t go away (or, as the FDA calls it, “unavoidable”) needs to be less than 20 parts per million.

This doesn’t mean that anything that’s not marked gluten-free is verboten for celiacs under penalty of stomachaches (and worse). Companies have the option to pursue labeling their foods gluten-free, and some might opt out. So the ingredients list will still help you decide whether certain foods are gluten-free (but if you’re hyper-sensitive to gluten, even if the ingredients list doesn’t include anything containing gluten, there’s still the risk of cross-contamination), with the added assurance that if foods are marked gluten-free, it’s been put to the test.

Will this make it more difficult to identify gluten-free foods quickly in stores? Possibly. Some companies might choose to not go through the trouble to label their product gluten-free, so we might be reading more ingredients lists. But since the gluten-free label is a fad these days (so, a big selling point), I’d be interested to see how many companies do indeed drop the gluten-free label.

– Kaitlin Puccio

Almost everyone has, at one point, tried to stick to a New Year’s diet. And almost everyone has failed. Why is it so difficult to keep our New Year’s diet resolutions? If you have celiac disease and have been taking advantage of your last few days of wheat-eating freedom before the New Year–when you’ve decided you’re going to start your wheat-free diet–yours is a diet resolution that, if broken, could be very damaging. Here’s a tip for sticking to a gluten-free diet.

Be reasonable! One of the reasons people fail to keep their New Year’s resolutions is because they are too ambitious. If you start out with ten different resolutions, it might be too overwhelming for you to try to change that many aspects of your life. Focus your energy on one instead, and stick to it. If you cheat, don’t give up on your entire resolution. Scold yourself, then accept that you cheated, and continue pursuing your resolution.

So if you have celiac disease and you accidentally eat soy sauce one day at lunch, don’t cave and have a meatball hero for dinner because you “already ate wheat products today anyway.” Make a note to buy some tamari sauce instead of soy sauce and stay away from wheat for the rest of the day. Just because you ate soy sauce doesn’t mean you’ve failed, or that eating gluten-free is an impossible task.

When I was first diagnosed with celiac disease, I didn’t know what to eat. I didn’t want to eat frozen gluten-free foods all the time, because a lot of them contain more sodium than I should eat in one meal. But before I made myself a meal plan, I had to eat some frozen foods so that I didn’t starve myself while trying to eliminate wheat. I had to transition slowly. While I traded cabinets full of pasta for quinoa, I stocked up on frozen foods. They got me through the week while I went shopping for beans, rice, and veggies. So although my ultimate goal was to use celiac disease as a catalyst for healthy eating, I had to start off slowly eliminating the foods that I couldn’t–or didn’t want to–eat.

If I had started off not eating those frozen foods AND not eating gluten-free foods, I would have had empty pantries, no meal plan, a growling stomach, and would have ultimately given up and written off gluten-free eating as a starvation diet.

So my advice for starting a gluten-free diet after New Years is to not be too ambitious. Give yourself time to adjust, set a reasonable goal for yourself–one that you can actually keep–and give your body a chance to have a healthy new year.

– Kaitlin Puccio

In New York City, food is everywhere. Street fairs, restaurants, parks—it’s hard to stay hungry if you’re walking around with a bit of cash in your pocket. If you’re gluten-free, you’re options are a bit more limited, but the temptation remains. Here are the six most frustrating…and tempting…places in NYC if you’re gluten-free.

1) Anywhere near a food cart with those amazing pretzels and hot dogs.

Especially in spring, these seem like the perfect nosh to accompany your walk down Museum Mile—convenient and ubiquitous, and completely forbidden.

2) Trying to find something to munch on in Central Park’s cafés.

Fries, burgers, sandwiches, croissants. All quick-and-easy, grab-and-go foods. Excellent for a stroll in Central Park. But no, not for you, gluten-free dieters. You get to choose from an apple, or a banana. How many bananas can you eat before going crazy?

3) The Plaza Food Hall is just a big tease!

But I keep going back, because it’s majestic. Luckily, there is a vendor that sells about seven different flavors of marshmallows, which are all gluten-free. I’ve suddenly become a big fan of marshmallows.

4) Crumbs Bake Shop.

Crumbs, where I used to sit with a cupcake and read my books for class, is now a distant memory. However! The very Crumbs where I used to study has become Crumbs Gluten-Free! I hope every day that soon, there will be a gluten-free option in every Crumbs Bake Shop around the city.

Also on the subject of cupcakes—visiting the Sprinkles Cupcake ATM is not only a good way to feel like an awestruck tourist in your own city, but it dispenses a gluten-free option: red velvet. Better luck next time if you don’t like red velvet…

5) Two words: NYC Pizza. (Well, a word and an acronym.)

6) On your couch ordering takeout.

If you actually find a place that offers gluten-free options (they do exist, depending on where you live in the city), there is probably an additional $2.00 fee for the gluten-free bun/gluten-free pasta/gluten-free bagel. I get it, gluten-free foods are expensive. But my salary doesn’t increase just because I’m gluten-free. I’m ordering in because I want to relax, not set fire to my credit card. Give me a lettuce wrap instead.

– Kaitlin Puccio