Four Waffles and a Pancake

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?

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– Kaitlin Puccio

To Celiac and Beyond

ZIMMYTWS VIA GETTY IMAGES“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.

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– Kaitlin Puccio

This post was originally published on The Baby Spot.

Gluten Isn’t Bad — I Just Can’t Have It

freeimages.com/michelmarconI hate gluten. Maybe this is a phrase that you’ve heard before. I have.

Gluten is bad for you, anyway. Another phrase that I’ve heard consistently, usually in response to learning that I can’t eat gluten (and usually with a hand wave and an inward curl of the shoulder to indicate that it’s not such a huge loss).

When I was writing “The Adventures of Celia Kaye,” I paid close attention to how the characters in the book interacted with gluten-containing foods. I wanted to make sure that little Celia Kaye fully understood her restrictions, had a healthy relationship with food, and focused on the positive instead of viewing celiac disease as a Bad Thing. These were important traits for me to portray, since they are important traits for the readers of the book to display.

I don’t hate gluten, and gluten isn’t bad — I just can’t have it. Here are a few reasons why this distinction is an important one.

1. “Gluten is bad for you” is largely inaccurate.

Gluten itself is not bad. What happens in the body of someone with celiac disease after ingesting gluten can be bad. But if I don’t have celiac disease or some other type of intolerance to gluten, what exactly is bad about it? Gluten is a protein, not a demon.

2. It can lead to an unhealthy relationship with food.

Even “junk” foods aren’t necessarily bad in themselves. It’s outside factors that determine how bad they are for our bodies — namely, the amount we consume, the way we consume them, and how our bodies are equipped to handle that consumption.

Eating unmonitored amounts of candy despite having diabetes? Probably not so good. Eating three slices of cake after lunch? Also not great if you do it more than you would honestly admit. Enjoying a reasonably sized scoop of ice cream once a week? Likely perfectly fine.

Thinking of a food as bad may lead to an eating disorder, even if it is motivated by health. Unfortunately, when many people think of gluten they think immediately of carbs: pasta, bread, cookies. It’s easy to start thinking of those foods as bad because they are the “gluten foods,” and spiral from there.

3. It focuses on the negative.

Saying “I hate gluten” puts a negative spin on living with celiac disease. Gluten didn’t do anything wrong. Yes it can be a pain, but the real struggles of having celiac disease don’t often lie in finding gluten-free foods.

There are plenty of gluten-free food options, doctors are becoming more informed—and what better way to treat a disease than with a diet change? If I had to choose a disease, I’d certainly choose one that has such a noninvasive treatment.

The real struggle lies in cross-contamination, accidental contamination, etc. But that’s not gluten’s fault. That’s human error. Hating gluten as a way to bond with other people who have celiac disease? It seems to me that this diminishes the idea of gaining a positive, supportive network. It opens the door to being resentful instead of coping, which can turn celiac disease into a preoccupation rather than something to consider but not be ruled by.

These negative phrases surrounding gluten may not only be damaging to adults, but can send a negative message to children who need to eat gluten-free. In order to set an example for children who will be gluten-free for the rest of their lives, it may be wise to start by ensuring the accuracy and clarity of statements made, and steering clear of generalizations about the badness of foods in and of themselves.

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– Kaitlin Puccio

Top 10 Tips for Helping Kids Cope with Celiac Disease

freeimages.com/tarasandsmarkIt can be difficult for kids to understand and manage celiac disease or gluten intolerance, and it might be just as hard for parents to watch their children struggle. But a celiac diagnosis doesn’t have to mean a lifetime battle. Here are my top ten tips for parents to help their children cope at any age.

  • Talk to teachers, parents, and caretakers ahead of time so your child isn’t faced with uncomfortable situations. 

If your child is at a birthday party and everyone is eating cake, it might be tempting for him or her to have some as well—especially if other kids are pressing your kid to have a piece of cake with them. Clue in the person temporarily responsible for your child and work together to make sure your kid’s gluten-free needs are protected. If needed, send a gluten-free treat along for your child to enjoy in these social situations.

  • Find camps that are dedicated gluten-free, or events in your community where your kid can be a kid—not a gluten-free kid.

You can both take a break from worrying about cross-contamination or being different.

  • Include your child the next time you bake cookies or decorate cupcakes for her class. 

Bake gluten-free goodies with your kid and show her that it’s real food, and that it can be just as fun as “regular” food.

  • Make it fun! 

Come up with scenarios and scripts so that your kid can be prepared to handle different situations, and can feel like an actor at the same time. Maybe your kid is a detective trying to find clues that something may be unsafe to eat. Practice spotting safe and unsafe products on grocery shopping trips.

  • Give your child a gluten-free hero to look up to.

Being different can be hard for younger children. That’s why I wrote “The Adventures of Celia Kaye,” a children’s book to help kids understand and cope with celiac disease. Boys and girls will follow Celia Kaye as her inability to eat wheat unleashes her imagination and takes her on adventures.

At first Celia Kaye keeps her difference a secret, but she discovers that it’s much more fun to share her adventures with her friends. If your kid needs a gluten-free hero, introduce him or her to Celia Kaye.

  • Let your kid be in charge. 

Educate your older kids about the more scientific aspects of celiac disease. Younger kids should be educated as well—especially about the basics. Give your kids the gift of knowledge and let them become the expert. They will be more likely to take an interest in their own dietary needs if they are well-informed.

  • Find a mentor for your kid.

If your child is a little older, you might find that he or she has questions that you aren’t able to answer. Or maybe you try to talk to your child, but your emotions get in the way of your intent to stay positive. Perhaps your child just needs someone to identify with.

The Celia Kaye Mentorship Program offers free 20-minute Skype chats, during which your child can speak freely about how the disease has impacted his life, and can ask any questions he might have on his mind.

  • Give your child a break from asking, “Is that gluten-free?” and turning down pizza when all her friends are chowing down.

With so many great-tasting gluten-free options available, such as Udi’s Gluten Free Three Cheese or Uncured Pepperoni Pizza, your child doesn’t need to miss out.

  • Focus on what they can have, not what they can’t. 

There are a lot of foods that need to be avoided after a celiac diagnosis, and much of the emphasis is placed on this. Show your child the wide variety of things he can eat—some of which he might not have even known existed. The focus becomes more positive and helps to balance the “losses.”

  • For older kids, find out which colleges are gluten-free accommodating.

You and your child will both be more comfortable knowing that she is attending a college that is knowledgeable about gluten-free needs. Udi’s has a great list of the top ten gluten-free accommodating colleges here. Also, help your kid find places to go with her friends on weekends that are both gluten-free friendly and “cool.”

It is rarely the case that anyone with a certain food allergy or intolerance only has friends with that same food restriction, and it is often difficult to find mutually agreeable venues for the restricted friend and the rest of the group. But it shouldn’t be difficult or limiting to find a great place that suits everyone’s dietary needs without compromising the fun.

We all want to protect our kids, but we still need to equip them with the knowledge they need to keep themselves healthy. Having a solid understanding of their disease can make it much easier to cope.

For some, it might not be a big deal—it’s just a part of life. For others, you might need to point out that not only is there a treatment for their disease, but that treatment is a diet.

While it may indeed be difficult to maintain—whether due to willpower of inadvertent contamination—it’s a very non-invasive treatment. Remind your child how miraculous it is that celiac disease can be treated with a lifestyle change.

“Disease” can be a scary word. The more your kids know and understand, the less scary it will be.

Kaitlin Puccio is the founder of the Celia Kaye brand, author of the children’s book, “The Adventures of Celia Kaye,” a regular contributor to The Huffington Post, and a Fitness Nutrition Specialist (NASM). Follow Celia Kaye on Twitter, like her on Facebook, and visit her at celiakaye.com.

This post is sponsored by Udi’s Gluten Free. Opinions are my own.

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Originally published on udisglutenfree.com.

 

Tips for Managing Food Allergies on Holidays

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Holidays can be fun, but they can also be a lot of work. I bake lasagna every year for Thanksgiving and Christmas. For the past few years, since going gluten-free, I’ve baked two lasagnas–the classic that I’ve always made, and a gluten-free version (which required some experimenting to get it just right). I do the same with pies.

I could serve my family gluten-free versions of everything and they probably wouldn’t even know, but doubling the amount of lasagna and pie simply means that everyone gets lots of leftovers.

I’ve learned a few tricks about both hosting and guesting since going gluten-free. Here are a few that might help make this holiday season more fun than work.

If you’re hosting…

1. Know your audience.

No one wants to spend all day in the kitchen only to find out that half the guests are allergic to the main dish. Figure out food allergies before planning the meal so you aren’t left with hungry guests and untouched plates of food to clean up.

2. Make it seem easy.

Ballerinas make dancing look easy. Imagine what it would feel like to sit in the audience and watch a dancer struggle for three hours. By the end, you would probably feel exhausted and tense.

If you host a guest who is gluten-free, or has any other type of food allergy, you may be stressed about how your gluten-free dish turned out. Don’t let it show, or your gluten-free guest might feel awkward about putting you in that situation.

3. Relax!

Your gluten-free guest may ask exactly what ingredients you used in certain dishes. If you make sure to disclose everything–even spices–your job is done. You can’t be expected to know every single ingredient that contains gluten. If you tell your gluten-free guests what’s in the dish, they will most likely know whether or not it’s safe–or know where to look to find out.

If you’re a guest…

1. Don’t show up ravenous.

Your host may do everything he or she can to provide a safe meal for you. But mistakes do happen. Your meal may be completely gluten-free, but maybe the spoon designated for the glutenous gravy was accidentally dipped into the gluten-free gravy, contaminating it. If you start thinking that there was cross-contamination during the cooking process and want to opt out of the main meal to be safe, you won’t be kicking yourself for not eating lunch in anticipation of dinner.

2. Offer to bring something.

Yes, it’s a nice gesture, and your host will probably appreciate having one less thing to cook. But it also ensures that there will be something on the table that you can eat.

3. Focus on the company, not the food.

While the meal may be the main event, holidays are really a time to get together with people you may not see as often as you’d like. Suggest sprinkling the evening with a game of pool, or assemble a cornhole set (gift idea?) in the garage or on the patio.

Whether you’re bound to be a host or a guest, if you keep these tips in mind, food allergies don’t need to be an added stress to an already busy holiday season.

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– Kaitlin Puccio

Talking to Kids About Celiac

The Adventures of Celia KayeMaybe you’ve mastered eating gluten-free as a result of a celiac diagnosis. Maybe you’re still figuring it out. Maybe you have non-celiac gluten sensitivity (NCGS), and are trying to navigate the medically mysterious lands between having celiac and not having celiac. Whatever your situation, you might agree that it’s not always easy to maintain a gluten-free diet.

Now imagine what it’s like to be a gluten-free kid. Be wary of pasta necklaces and play dough in art class. Sit there politely while everyone else eats cupcakes on the first day of school. Don’t eat the pizza at the birthday party (or the cake).

If you have (or know of) a child who is gluten-free, you might know how hard it can be for kids to cope with their dietary restrictions. Thankfully, there are ways to make it easier on your child.

1) Turn it into an adventure.

Being a child who is gluten-free can be especially frustrating around the holidays, when cookies and candy are shared in abundance in school.

If your child is having a hard time accepting that she is gluten-free because it makes her feel different, check out “The Adventures of Celia Kaye,” a kids’ book that I wrote about a little girl named Celia Kaye who has something she thinks she needs to hide. She goes to great lengths to keep her mysterious secret concealed from her friends by becoming a master storyteller.

This book is designed to help kids cope with and understand not only celiac disease, but all differences, and goes beyond giving definitions and explanations–your child will follow Celia Kaye on her adventures as she creates stories about her limitations using unlimited imagination.

2) Talk to your child’s teachers/caretakers so that your child has an ally when you’re not around.

It’s not only important that your child knows to screen for gluten in foods, but it’s also important for those responsible for your child to understand what gluten-free really means. Wheat-free doesn’t necessarily mean gluten-free.

3) Check out the Gluten Intolerance Group’s Generation GF program.

The Gluten Intolerance Group offers programs that allow your kid to be a kid–not a “gluten-free kid.” Between events, camps, and pizza kitchen tours organized specifically with gluten-free needs in mind, kids don’t have to worry about being different.

4) Help your child understand that gluten-free food is real food.

It can be especially difficult for very young children with celiac disease to understand why they can’t eat certain foods. If glutenous foods are considered the “normal” version, then aren’t the gluten-free versions abnormal?

Brands like Smart Flour Foods, Russo’s New York Pizzeria, and Lucy’s cookies are not only trying to make gluten-free foods, but they are trying to make gluten-free foods that appeal to everyone–not just those with celiac.

Anthony Russo of Russo’s New York Pizzeria says that families order his gluten-free pizza because it tastes so good even if there is only one child in the family with celiac. That way, that child doesn’t need to order a special pizza, and no one else feels like they aren’t getting “the real thing.”

Dr. Lucy Gibney of Lucy’s cookies uses nutrient-dense ingredients to create her cookies, which she thinks of as “good food,” not necessarily “gluten-free food,” even though, yes, her cookies are gluten-free.

It can be hard being different, and it can be hard being gluten-free. For kids, it’s even harder. Knowing how to navigate celiac disease or other food intolerances can help your kid feel like a kid — not a gluten-free kid.

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– Kaitlin Puccio

Celiac Disease and Addiction

stockphoto.com/kirstypargeterThere are myriad ways that treating celiac disease can lead to improved health. But are there ways in which treating the disease could contribute to the development of addiction?

According to the National Council on Alcoholism and Drug Dependence, alcohol is absorbed by the stomach and small intestine into the bloodstream, then circulated throughout the organs in the body. Physical dependence occurs when central nervous system cells need alcohol to function normally.

Women are at a higher risk of developing physical alcohol dependence than men because a woman’s blood alcohol concentration tends to be higher than a man’s after drinking the same amount of alcohol. From this it can be deduced that the higher the blood alcohol concentration, the higher the risk for developing physical alcohol dependence.

1) Celiac disease and malabsorption

One of the symptoms of untreated celiac disease is malabsorption of nutrients into the bloodstream. When someone with celiac disease ingests gluten, antibodies that damage the small intestine are produced, resulting in a flattening of the villi. This flattening leads to malabsorption of nutrients. Malabsorption can also be a result of lactose intolerance, Crohn’s disease, and many other conditions.

2) Ingesting alcohol

As previously stated, alcohol is ingested and absorbed into the bloodstream through the gut, and untreated celiac disease can cause malabsorption. And in the case of alcohol consumption, the higher the blood alcohol concentration, the higher the risk for developing physical dependence. Conversely, the lower the blood alcohol concentration due to malabsorption, the lower the risk of developing physical dependence on alcohol.

3) Treatment and absorption

Assume that there is a man who comes from a long line of alcoholics on one side of his family, and a long line of celiac disease sufferers on the other. This man has been drinking alcohol for 20 years without becoming addicted.

One day he is diagnosed with celiac disease, and eliminates gluten from his diet so that his villi heal. Soon after, his intestines begin to properly absorb. Now, though, the alcohol that he drinks is properly absorbed, meaning his blood alcohol concentration is greater, which, as stated above, means greater risk for physical dependence. Is it possible that the healing of his gut increased his risk of forming an addiction — a physical dependence — to alcohol?

By this logic, it could be that treating celiac disease can leave sufferers who are also alcohol drinkers vulnerable to physical alcohol dependence. The interplay between celiac disease and addiction may extend beyond depression — a symptom of celiac disease — and its known correlation with addiction.

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– The Editors

You Are What You (Wh)eat

Tetra Images via Getty ImagesIn a recent New York Times article, “Your Brain, Your Disease, Your Self,” authors Nina Strohminger and Shaun Nichols state that the most powerful predictor of identity change is disruption to the moral faculty. This was stated in the context of analyzing neurodegenerative diseases such as Alzheimer’s. But what about other diseases, namely, celiac disease? Can consuming gluten change the identity of someone with celiac disease in the same way that neurodegenerative diseases seem to change the identity of those who suffer from them?

1) The Gut and the Brain
Ninety 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 the gut. If my digestive tract is damaged and off-kilter due to undiagnosed (and untreated) celiac disease, my levels of serotonin and dopamine are off, which directly affect my mood. This established link is the first step in examining the relationship between celiac disease and identity.

2) The Gut, the Brain, and Morals
Exploring further the link between the gut and the brain, if undiagnosed celiac disease can affect my brain in the way described above, could it also affect my brain in other ways? For example, could undiagnosed celiac disease affect my moral faculty? For the purpose of this argument, I will assume that the moral faculty originates in the brain. (I assume this based on the idea in “Your Brain, Your Disease, Your Self” that the neurodegenerative disease frontotemporal dementia muddles the moral compass.)

3) The Gut, the Brain, Morals, and Identity
If my moral faculty is affected by undiagnosed celiac disease, and disruption to the moral faculty is the most powerful predictor of identity change, then could undiagnosed celiac disease alter my identity the same way that Alzheimer’s alters the identity of those with the disease? If I had the ability to research these connections further, I would set out to confirm that undiagnosed celiac disease could affect identity. Without the ability to research further, however, I can only use logic and observation to make an educated guess.

While the disruption of the moral faculty in those with frontotemporal dementia may manifest in antisocial outbursts, pathological lying, and apathy, the disruption of the moral faculty in those with celiac disease may manifest in other ways. Apathy could indeed be one of those ways, as apathy is related to (though different from) depression, and depression is a symptom of celiac disease.

If what you eat affects your brain, and your brain is the garden of your morals, and your morals are central to your identity, I suppose you really are what you eat.

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– Kaitlin Puccio

The Four Noble Truths of Celiac

Annabelle Breakey via Getty ImagesFor many, transitioning from a gluten-eater to a gluten-free eater is exceedingly difficult. Some say that they simply can’t stick to a gluten-free diet — even after a celiac diagnosis. Aside from wheat addiction, giving up gluten is so difficult in part for those with celiac because it means facing the idea of never eating certain foods again. They want the gluten-filled glory days to last forever, and in turn, suffer from fatigue, stomach pains or a slew of other undesirable symptoms after ingesting gluten.

After hearing stories from my nutritionist about those who refused to eat gluten-free after a celiac diagnosis, I began to ponder the connection between suffering and the desire for gluten. How can we find relief from the cycle of suffering and desire? For me, the answer lies in the Four Noble Truths of Buddhism.

1. All life is suffering.
The first Truth states that suffering exists. The good news is that nothing lasts. So the extant suffering will come to an end. (The bad news is that nothing good lasts either. That delicious bite of flour-packed cake will be gone in a minute.) If I have celiac disease and suffer from nausea after eating a wheat bagel that I couldn’t resist, that nausea won’t last forever. In the moment, I will need to accept that I feel nauseous, and to get through it I will need to remind myself that my nausea will cease.

2. The cause of suffering is desire.
After those with celiac ingest gluten, a likely result is the desire to stop feeling sick, depending on that person’s symptoms. Some of those with celiac who eat strictly gluten-free may find that they desire something with gluten, or the ability to properly digest gluten. These desires cannot be met, and cause suffering.

3. To end suffering is to end desire.
If the cause of suffering is desire, then to end suffering is to end desire. If I apply this to celiac disease, if the cause of my suffering is my desire to eat a whole wheat wrap, then to end my suffering is to end my desire to eat a whole wheat wrap. This is more difficult than it may seem, however. I can certainly refrain from acting on my desire, but that doesn’t mean the desire is no longer there. How can I end my desire for that whole wheat wrap when desire seems to be something that is out of my control?

4. The path to the end of suffering.
The way to end desire is the path to the end of suffering. In Buddhism, this path is The Noble Eightfold Path. The Eightfold Path factors include right view, right intention, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration. While the meaning behind each of these factors might be full of depth and complexity too sublime for an article on finding celiac disease nirvana, considering the definitions of each of those words as we approach each individual day of our gluten-free lives might start to reshape how we think about celiac disease, gluten-free foods, and how they relate to us. If you are stuck in a cycle of suffering and desire, a new perspective might be the thing that releases you, and that new perspective may come from a simple awareness of the eight factors that make up the path to the end of suffering.

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– Kaitlin Puccio

The Gluten-Free Fad and the Logical ‘Or’

stockphoto.com/kirstypargeterHas the gluten-free fad helped or hurt those who are gluten-free as a medical treatment? There are convincing arguments for both sides. But arguments require logic, and the logical “or” is inclusive (“or” can mean “both”). Perhaps it is the case that the fad has both helped and hurt. Here are a few ways the gluten-free fad seems to have both helped and hurt.

Helped: Those in the food service industry generally know what gluten is these days, so when someone with celiac says, “I’m gluten-free,” the statement is met with more of an understanding than it has been in the past. (Remember when you didn’t know what gluten was? I remember when I didn’t, and it wasn’t unconscionably long ago.)

Hurt: On the other hand, some of those in the food service industry who now know what gluten is thanks to its mainstream qualities are tired of hearing about gluten. So when someone with celiac says, “I’m gluten-free,” the statement may indeed be met with understanding, plus a side of eye roll.

The eye roll we can deal with if it means our food is being handled properly. But if the eye roll is a manifestation of the eye rollers’ thoughts, and those thoughts are something along the lines of, “Great, another gluten-free faddist,” there is a danger that the eye roll means the condition won’t be taken as seriously.

Helped: Let’s face it — what’s popular gets more attention. More people are talking about celiac disease in light of gluten’s celebrity status. And the more people talk about it, the more people think about it, and hopefully more people get tested for celiac disease.

You can’t always treat things you aren’t aware of, so the more awareness there is about celiac (even if it’s a byproduct of the gluten-free fad), the better the chances are that people will get tested and treated.

Hurt: More attention, however, doesn’t always mean positive attention. There are people with large platforms who talk about the gluten-free diet, and the disseminated information might not always be accurate.

For example, a celebrity with a large following might state that, “If you don’t have celiac disease, you don’t need to be gluten-free.” She might have meant to imply that the gluten-free diet isn’t healthy for everyone. But what she said isn’t accurate (people have non-celiac gluten sensitivity (NCGS), etc.), and her inaccurate statement might be heard by millions of people — which might add fuel to gluten-free intolerance regardless of the celebrity’s intention.

Even some people with celiac disease scoff at those with NCGS or a gluten-intolerance/sensitivity, as if it’s somehow “less than” because it’s not celiac disease. Perhaps that stems from the constant need for those with celiac to defend/explain/protect the importance of their gluten-free eating, or annoyance at the rampant misconceptions about celiac disease. But if someone is sensitive to gluten and doesn’t need to carefully monitor cross-contamination, it doesn’t mean that person has it any easier — it means they have it different.

Helped: Do you think General Mills would be releasing gluten-free Lucky Charms if there weren’t enough people following the gluten-free diet? Even if you don’t eat Lucky Charms, think about how good gluten-free foods have gotten over the years. More and more brands are coming out with gluten-free foods, healthier gluten-free foods, and more delicious gluten-free foods. If there weren’t such a huge demand for gluten-free products, there would be less to choose from.

What happens when the fad ends? It’s hard to imagine that General Mills would invest so much time and money into making their products gluten-free (they’re not just coming out with gluten-free versions…the version will be gluten-free) if it weren’t here to stay. Even when the fad ends, there will be people who need to eat gluten-free, and the fact that companies like General Mills acknowledge the lasting need for gluten-free food indicates that gluten-free eating is more than just a passing fad.

Hurt: So, are companies like General Mills trying to capitalize on the gluten-free fad? Is it an eye-roll-inducing move to introduce gluten-free Cheerios, or does it give credibility to gluten-free? What happens to smaller companies that produce gluten-free foods that have been around since the beginning?

The “bigger” gluten gets, the more of a target it becomes. It will become more of a target of pharmaceutical companies, food companies, anyone who can think of a way to make money based on the fact that so many people require gluten-free food. Will a fiscal focus help or hurt (or both!) celiac disease researchers? Will a bigger pond dilute the meaning of the term “gluten-free?” There are already restaurants that claim items are “gluten-free,” but when pressed, will continue with, “but not recommended for celiacs.”

Because of the gluten-free fad, there is more awareness about celiac disease, and there are more and better gluten-free options. Borne from the fad are also dangerous misconceptions about gluten and celiac disease, as well as resistance to and dismissal of the term “gluten-free,” which can translate to carelessness toward a medical treatment. So, has the gluten-free fad helped or hurt?

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– Kaitlin Puccio