Living with celiac disease

The quest to be gluten-free isn’t always easy.

Story: Victoria Schlabig

Over the past few years, being “gluten free” has become an increasingly common dietary restriction among Americans. Hear from a nurse practitioner about how to diagnose gluten allergies and celiac disease, a celiac patient about how she changed her diet and a chef on cooking and eating gluten-free.

Pinpointing the problem

“Wheat in the ’70s was changed. It went from wheat that’s just short in stature to genetically modified, very tall, to feed the multitudes,” says Lori Esarey, a nurse practitioner and founder of Total Nutrition and Therapeutics in Lady Lake who holds a master’s in nutritional medicine. “And when they did that and that genetic modification, they literally changed the structure, and it became very indigestible for most people.”

An inability to digest the modified wheat crop causes what’s now known as celiac disease, a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine, according to the Celiac Disease Foundation. The disease affects an estimated 1 in 100 people worldwide, and 2.5 million Americans are undiagnosed and at risk for long-term health complications, states celiac.org. 

Celiac disease and gluten intolerances often are misdiagnosed as irritable bowel syndrome, though many people diagnosed with IBS don’t respond to treatments, which often will lead some doctors to suggest removing gluten from the diet for a chance of improvement. Gluten is a group of proteins found in grains, especially wheat, that cause an allergic reaction for people with celiac disease.

Lori works at getting to the root cause of what’s driving a person’s issues and concerns. She treats many nutritional disorders, including celiac disease, which is a common issue. Celiac differs from other nutritional disorders, she says, because not all patients have the definitive symptoms of the disease. Many patients actually have a gluten intolerance, which can be harder to diagnose and riskier if it remains untreated.

Some patients with an intolerance experience bloating, distension and abdominal pain, but “90 percent of them don’t have gastrointestinal issues at all. They have things like hair falling out, nails cracking, memory loss, but not the overt GI symptoms, so that’s what makes it hard to diagnose,” Lori says. 

Lori sometimes sees patients with nonspecific symptoms, such as simply not feeling well, or they have been to many doctors who can’t seem to find answers.

“That is usually a key indicator that they’ve got some sort of food intolerance going on,” she says. “Gluten is one of the most prevalent food intolerances today.” 

Diagnosing celiac is difficult because some lab tests look for only one antibody, though there are now 24 possible antibodies related to gluten intolerance. The tests also are pricey and not covered by insurance, so Lori typically begins with a “modified elimination diet” and monitors how the patient feels after a couple of weeks of eating gluten-free.

“I always say if it looks like a duck, quacks like a duck, it’s a duck,” says Lori, regarding the fair assumption that these issues may be linked to a gluten allergy.

When the wheat crop was modified in the 1970s, it didn’t change our DNA, but something in it “activated” the genes in some people who are intolerant to gluten. People aren’t newly developing gluten allergies, but it is a genetic trait. If you have those genes, “you aren’t necessarily predestined to develop an intolerance, but you are definitely predisposed,” Lori says.  

Changing the diet

Lori’s daughter, Aubrey Simmons, was diagnosed with celiac disease in 2013 after years of digestive issues and seeing nutritionists and doctors who provided a number of different diagnoses and advice.

“I could not suck in my stomach at all. It felt like I was nine months’ pregnant all the time,” says Aubrey, office manager at Akers Media.

Extreme bloating in a patient often causes doctors to make an IBS diagnosis. Many doctors told Aubrey that she had IBS, but she didn’t know what to do because as she eliminated different items from her diet, nothing seemed to help. 

Rather than immediately taking medication to treat IBS, she was urged to do a food panel, which resulted in finding out that she’s allergic to gluten, as well as a few foods. But when she got the results from the food panel, she didn’t want to change her diet.

“I liked the way I was eating, and the food was good, and I love doughnuts. And it was hard because I went to college and healthy food is really expensive,” Aubrey says.

Once she finally changed her diet and eliminated gluten, she lost weight and felt less bloated. Gluten is extremely inflammatory, so staying away from it often decreases bloating in people with or without an intolerance.

“I just really felt better, that was the main thing. I didn’t care to lose the weight, I didn’t care about any of that, but I just felt good,” Aubrey says. 

In 2013, there weren’t many options for gluten-free foods, but now Aubrey has found many alternatives. When cooking at home, if she’s not using an alternative such as gluten-free pasta, she usually sticks to meat and vegetables.

“My go-to is chicken on the grill with rice and green beans. Easy, and I know it doesn’t hurt my stomach. I like fish, too,” Aubrey says. 

More restaurants have gluten-free options, too, so it’s easier to go out.

“I’m so used to just putting a burger on top of a salad now. I’ll get a steak with a salad and a vegetable and I can even eat the mashed potatoes,” Aubrey says. 

It’s important to pay attention to more than what labels say at the grocery store if you are eating gluten-free. In the case of gluten-free items, choosing a package that says “GF” doesn’t necessarily mean it is 100 percent free of gluten. The Celiac Disease Foundation’s Medical Advisory Board supports that 20 parts per million (ppm) of gluten is standard for gluten-free labeling. Via research studies, CDF concludes that 10 milligrams a day is safe for a person with celiac, according to celiac.org.

The issue with the 20 parts per million leeway, however, is that “a lot of the serving sizes on these packages are very little, like one cookie or five crackers, and all of us know that no one’s going to eat one cookie or five crackers. You’re going eat the whole box,” Lori says. However, for intestinal damage to occur, you would have to eat at least 5 pounds per day of gluten-free food containing 20 ppm of gluten, celiac.org states.

Preparing the meals

Steve Wuerthele, a sous chef at Haven in Tampa, often alters menu items for customers with celiac disease and other dietary restrictions. He also sometimes cooks for Lori, prepping gluten-free meals for her busy schedule. For Lori, he typically sticks with raw vegetables and ingredients like almond flour and items that are natural. 

His recipes include zucchini lasagna, or a tomato with a duck egg and chives on top for a quick “to go” breakfast.

“I’ve made chia puddings because that’s a good breakfast protein source. Rolled oats that are gluten-free, too, you can make overnight peanut butter and jelly oats with some strawberries,” he says. 

In the past, not much was known about gluten-free diets, but today, Haven and many other restaurants have an understanding of celiac and include gluten-free options or substitutions. Different nationalities have different substitutions, too.

“We have a certain way of changing it, like we can always substitute something out or go from there,” Steve says. “But we cook with a lot of soy, and soy carries (gluten), and even Worcestershire carries it, so you pretty much have to read the ingredients.” 

Steve says the biggest point he’s learned is that you have to be careful when reading labels because a lot of items you may think are safe might actually contain gluten.

“It’s a very cool process to learn,” he says.

HOW TO FIND HELP

Instagrammers Ula Bozek (@yourpcosgirl) and Jackie Kelley (@mommyislosingit) were helpful sources when Aubrey Simmons was diagnosed as allergic to gluten and needed to start living a gluten-free lifestyle. Both Aubrey and nurse practitioner Lori Esarey recommend the book “Wheat Belly,” by cardiologist William Davis. “Wheat Belly” discusses the signs and symptoms of an intolerance to gluten and explains how eliminating wheat from our diets also can help us lose weight, shrink fat storage places on the body and transform our health.

Where is gluten found?  

Some common foods that contain gluten are bread, pasta, crackers, baked goods, cereal, breading and coating mixes, croutons, sauces and beer. Foods that may contain gluten and require checking the label carefully include meat substitutes such as veggie burgers, seitan and imitation meat and seafood, candy, soups, french fries and chips. Less common items that also should be checked are over-the-counter medications, herbal/nutritional supplements, vitamins, lipsticks and lip gloss.

Source: celiac.org

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GLUTEN-FREE APPLE CINNAMON BREAD

INGREDIENTS

• Apple cinnamon mixture:
• ½ cup coconut sugar or brown sugar
• 1 tablespoon ground cinnamon
• 1 Granny Smith apple peeled, cored and finely chopped
• 1 teaspoon olive oil
• Pinch of salt
• For gluten-free bread:
• ½ cup unsalted butter softened
• 2/3 cup coconut sugar or white cane sugar
• 2 teaspoons pure vanilla extract
• 2 eggs
• 1½ cups gluten-free baking flour
• 1½ teaspoons baking powder
• ½ teaspoon kosher salt
• ½ cup full-fat Greek yogurt

DIRECTIONS

Preheat oven to 350° F. Lightly oil 9×5-inch loaf pan. In small mixing bowl, add ingredients for apple cinnamon mixture, stir well and set aside. In a standing mixer or a mixing bowl, cream together the butter, coconut sugar and vanilla extract (wet mixture). Add eggs one at a time and continue mixing until well combined. In a separate mixing bowl, stir together the gluten-free flour, baking powder and salt. Pour flour mixture into bowl with wet mixture and mix until combined. Add Greek yogurt and mix until smooth and well combined. Mixture should be very thick and doughy. Spread half of the bread dough in prepared loaf pan. Add 2/3 of apple cinnamon mixture and press it into the dough with a spoon. Spread remaining bread dough on top, followed by remaining apple cinnamon mixture. Again, press apples into the bread dough and make sure all of the batter and apples are evenly distributed in loaf pan. Place on center rack and bake 50 minutes. Turn oven off and allow bread to sit in oven for additional 5 minutes or until it tests clean with a knife. Remove bread from oven and allow to cool for at least 20 minutes before running a knife along the edges and turning it out onto cutting board. Cut thick pieces of bread and serve with butter and honey.

Source: theroastedroot.net 

CHILLED CHOCOLATE ESPRESSO TORTE WITH TOASTED HAZELNUT CRUST

CRUST INGREDIENTS

3⁄4 CUP hazelnuts

1⁄4 CUP coconut oil

3 TABLESPOONS maple syrup

1⁄4 TEASPOON fine-grain sea salt

1 1⁄2 CUPS gluten-free rolled oats, divided

FILLING INGREDIENTS

1 1⁄2 CUPS cashews, soaked at least 4 hours

3⁄4 CUP pure maple syrup 1⁄2 CUP coconut oil

1/3 CUP cocoa powder

1/3 CUP dark chocolate chips, melted

2 TEASPOONS pure vanilla extract

1⁄2 TEASPOON fine-grain sea salt

1⁄2 TEASPOON espresso powder (OPTIONAL)

Shaved dark chocolate, for garnish (OPTIONAL)

Coconut flakes, for garnish (OPTIONAL)  

DIRECTIONS

MAKE THE CRUST: Preheat oven to 350° F. Lightly grease 9-inch pie dish with coconut oil. In food processor, blend 1⁄2 cup of the rolled oats on high until you have a rough flour, place in small bowl and set aside. Without cleaning the machine, process hazelnuts into fine crumb with texture of sand. Add coconut oil, maple syrup, salt and oat flour and process again until dough comes together. Add remaining 1 cup of rolled oats and pulse until oats are chopped but still have some texture to them. The dough should stick together slightly when pressed between your fingers. If it doesn’t, try adding a bit more maple syrup or processing a bit longer. With your fingers, crumble the dough evenly over the base of pie dish. Starting from the middle, press mixture firmly and evenly into the dish, moving outward and upward along the side of pie dish. The harder you press the crumbs into the dish, the better the crust will hold together. Poke a few fork holes into the bottom to let steam escape. Bake the crust uncovered 10-13 minutes until lightly golden. Remove from oven and set aside to cool on rack 15-20 minutes.

MAKE THE FILLING: Drain and rinse cashews. In high-speed blender, combine soaked cashews, maple syrup, oil, cocoa powder, melted chocolate, vanilla, salt and espresso powder and blend on high until mixture is completely smooth. If blender needs more liquid to get it going, add a tablespoon of almond milk. Pour filling into the prepared crust, smoothing out the top evenly. Garnish with shaved chocolate and/or coconut flakes, if desired. Place pie dish on even surface in freezer, uncovered. Freeze for a couple of hours, then cover dish with foil and freeze overnight, or minimum of 4-6 hours, until the pie sets. Remove pie from freezer and let it sit on counter for 10 minutes before slicing. This pie is meant to be served frozen. Serve with finely chopped chocolate, if desired, but it’s fantastic on its own, too.

TIP: NOT IN THE MOOD TO MAKE A CRUST? Turn this dessert into freezer fudge by preparing only the chocolate filling. Pour the filling into 8-inch square pan lined with plastic wrap. Top with 1⁄2 cup/65g toasted hazelnuts or walnuts and freeze until solid (about 2 hours). Slice into squares and enjoy straight from the freezer.

Sources: mynewroots.org, ohsheglows.com

RAMEN NOODLES

INGREDIENTS

2 gluten-free ramen cakes or nests

Half a carrot, shredded

One green onion, cut

1/8 TEASPOON of salt

Pepper

Garlic powder

Curry powder

Ginger

1 wide-mouth Mason jar (16 oz.) with lid

DIRECTIONS

Add all ingredients to the Mason jar. Boil 2 cups of water and pour into the Mason jar and cover with lid. Allow to sit for 5 minutes or until noodles are tender. Enjoy.