There’s more to “gluten-free” than fad diets—some people say “no” to grains because of a serious gluten-intolerant disorder known as Celiac disease. This disease affects the lining of the small intestine, preventing the body from absorbing key nutrients in wheat and other grains. An estimated 1 in 133 people in the U.S. live with Celiac disease; 83% of them remain undiagnosed. In a majority of cases, people live unaware that they might be affected.
Kaitlin Puccio, founder of a new lifestyle brand Celia Kaye geared toward education for Celiac, hopes to dispel some of the mystery. Through the brand, she has published articles on MindBodyGreen and Huffington Post, and she’s currently working on a children’s book. Kaitlin sat down with IVY Magazine to outline some of the challenges facing those affected by Celiac and offers ways to lead a healthier life with or without the disorder.
Kaitlin Puccio is an IVY Member (NYC). Connect and collaborate with her here!
IVY: What do people not know about Celiac disease? What’s been the most surprising discovery for you personally?
Celiac disease is still a relatively new research area. Researchers are still discovering things about the disease. Studies are being overturned as new information is found, and we’re still figuring out the right questions to ask.
Everyone should know that Celiac disease is genetic and sometimes asymptomatic. If anyone in your family has the disease, there is a possibility that you have it as well. And just because you don’t feel sick doesn’t mean that you aren’t doing damage by ingesting gluten, if you have undiagnosed Celiac disease.
I didn’t realize how sick I felt until I stopped eating gluten and experienced what it was like to not feel sick. I was amazed at how long I had been living with fatigue and discomfort—since I can remember as a child—without realizing it isn’t normal.
IVY: What are your top pieces of advice for those who suffer from the disease?
There are a lot of misconceptions about Celiac disease. I often find that people will read studies and accept them as fact. Sometimes, when new studies come out or when new theories are proposed, some people dismiss new ideas because of a prior study they read in the past.
It’s difficult to figure out what to believe and what to question in a time when there is so much information—and misinformation—available. I find it’s important to be open-minded when new ideas or questions arise, to apply logic when trying to think through those ideas, and to be aware that what is accepted in the medical community as true today may be altered as researchers continue to make discoveries about Celiac disease.
IVY: There’s a “gluten-free” craze among people who don’t have Celiac disease. Is a non-gluten diet healthy/necessary for people who don’t have the disease?
Believe it or not: a gluten-free diet can be just as unhealthy or worse than a “regular” diet.
There are many gluten-free products available from desserts to frozen dinners and more, and simply because a food is gluten-free doesn’t mean that it’s good for you. Many gluten-free foods actually have more fat, sugar, and sodium than their glutenous counterparts.
Also, when people cut gluten from our diet, they also cut things like bread and oatmeal (oats must say “gluten-free” to be safe to consume), which provide their bodies with necessary nutrients. When they cut out foods that provide those nutrients, they must add other foods into their diet that provide those nutrients.
IVY: When is it helpful to be gluten-free?
There are three types of people that adopt a gluten-free diet: those with Celiac disease, those with a gluten sensitivity/intolerance/allergy, and those who are fad-dieting.
For those with celiac disease, the gluten-free diet is currently the only available medical treatment.
Those with some type of intolerance, such as non-celiac gluten sensitivity (NCGS—which, once thought to be a myth, has now been validated), feel better when they don’t eat gluten, even though they don’t have Celiac. Surprisingly, researchers still aren’t sure what exactly causes Celiac disease to manifest. People can be genetically predisposed to the disease and not have it manifest. They can also develop the disease later in life, which is why people with Celiac in the family should get tested every year or two. This ability to develop the disease later in life makes me wonder if NCGS is a warning sign for the potential development of Celiac disease.
Those who adopt a gluten-free diet simply because they believe it is healthy might not have all the facts. It may indeed be healthier for those who eliminate carb-rich foods like bread and pasta and replace them with things like fish and salad, but replacing a cupcake with a gluten-free cupcake is not necessarily a healthy choice.
IVY: What are your biggest health tips in general?
If you are going to base your beliefs on what you’ve read, then read everything, especially articles from reputable sources. The danger of the Internet is that anyone can start a blog, call himself an expert, and post whatever he wants without answering to fact-checkers, editors, or peer reviewers. Medical journals might not be as fun to read as listicles, but even if you don’t want to read them in full, use them to fact-check your own beliefs, or even to point you to other sources of information that might be easier to digest.
In my own experience, I’ve felt best when I combine what the science says with what my body says. Science says that gluten-free makeup such as eyeshadow doesn’t affect those with Celiac disease because the disease occurs as a result of ingestion, not topical contact. I know that science also once said that NCGS didn’t exist, which has since been debunked. I also know that when I wear makeup with gluten in it, I get scaly patches on my skin. Since we don’t know everything there is to know about Celiac disease, I’m going to assume that there are likely facets we don’t yet know about the disease that are indeed linked to contact dermatitis.
My body reacts badly to gluten—whether topical or ingested, so the best choice for me is to eliminate gluten entirely until we know more. And it doesn’t hurt me to eliminate gluten from my makeup, so why not?
Also, being healthy isn’t something that happens with one meal. It’s a lifestyle, and it’s a combination of eating right, exercising, getting enough sleep, and mental wellness. It takes an average of six weeks for intestines to heal after someone diagnosed with Celiac disease stops eating gluten.
In an era of instant gratification, six weeks seems like a long time. If you’ve reached week five of a new healthy lifestyle and don’t notice any change, stick with it. It’s a lifestyle. It’s not something to achieve and then give up on, so be sure your lifestyle goals are realistic. If you decide not to eat brownies, but your favorite dessert is brownies, that’s not something that you’ll likely be able to commit to for the rest of your life.
IVY: What are the top health “myths” that you see being propagated, and why are they misleading?
In general, we tend to demonize certain food groups at different times. First, low-fat foods were in style—no one told us that low-fat usually means higher sugar. Then carbs were bad, and fat is good.
In reality, no food is bad on its own. It’s the quantity of that food that we consume that can lead to negative consequences. Having one cookie twice a week won’t lead to obesity, but having one package of cookies twice a week might. Eating too much of even the healthiest food can lead to negative reactions. I think rather than spreading the idea of certain foods being “bad,” the emphasis should be on quantity of food consumed. Perhaps, if we have a healthier way of looking at food, we won’t see so many eating disorders.
IVY: How can the IVY Community best support you?
My goal is to educate and spread awareness. If anyone has family members with Celiac disease and hasn’t gotten screened, do so! And encourage your relatives to do so also. It’s a simple test. Feel free to pass along links to my articles on The Huffington Post for more information or visit celiakaye.com for resources. If you know of anyone who has a child suffering from Celiac disease, or any type of food allergy, tell them to email firstname.lastname@example.org for a notification when my children’s book comes out, which is meant to help children understand and cope with food intolerances. I am also grateful for any donations to my GoFundMe campaign to support the cost of producing and printing the children’s book.
I am always open to cross-training of the mind. I studied philosophy and French in college, and I make films. I started a company called Bent Frame. I write about health and entrepreneurship, and also write short fiction, non-fiction, poetry, screenplays, children’s books, and have written a novel about artificial intelligence. I have a wide range of interests, and I am always happy to collaborate with like minds. I think a lot of what we are missing today is simple discussion of ideas—sharing of minds.
IVY is great for that reason—it gives people the opportunity to have those discussions, for people to come together in related or unrelated fields, in linear or non-linear ways. I have yet to find a subject that didn’t interest me or that I didn’t want to know more about.
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