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 glutenfree, 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.

GLUTEN-FREE APPLE CINNAMON BREAD INGREDIENTS

Apple cinnamon mixture:

½CUP coconut sugar or brown sugar

1TABLESPOON ground cinnamon

1 Granny Smith apple peeled, cored

1TEASPOON

Pinch of salt

For gluten-free bread:

DIRECTIONS

½CUP unsalted butter softened

2/3CUP coconut sugar or white cane sugar

2TEASPOONS pure vanilla extract

2 eggs

1½CUPS gluten-free baking flour 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

Preheat oven to 350° F. Lightly oil 9x5-inch loaf pan. add ingredients for apple cinnamon mixture, stir well and set aside. standing mixer or a mixing bowl, cream together the butter, coconut sugar

WHERE IS GLUTEN FOUND?

Again, press apples into the bread dough and make sure all of the batter and apples are evenly distributed in loaf pan. Turn oven off and allow bread to sit in oven for additional 5 minutes or until it tests clean with a knife. 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. bread and serve with butter and honey.

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

CHILLED CHOCOLATE ESPRESSO TORTE WITH TOASTED HAZELNUT CRUST

CRUST INGREDIENTS

¾ CUP hazelnuts

¼ CUP coconut oil

3 TABLESPOONS maple syrup

¼ TEASPOON

1½ CUPS gluten-free rolled oats, divided

FILLING INGREDIENTS

1½CUPS cashews, soaked at least 4 hours

¾CUP pure maple syrup

½ CUP coconut oil

1/3CUP cocoa powder

1/3CUP dark chocolate chips, melted

2TEASPOONS pure vanilla extract

½TEASPOON

½TEASPOON 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 ½ cup of the rolled oats on high until you have a rough flour, place in small bowl and set aside. Without cleaning the Add coconut oil, maple syrup, salt and oat flour and process again until dough comes together. The dough should stick together slightly when base of pie dish.

The harder you press the crumbs into the dish, the better the crust will hold together. Bake the crust uncovered 10-13 minutes until lightly golden.

MAKE THE FILLING: Drain and rinse cashews.

If blender needs more liquid to get it going, add a tablespoon of almond milk. Garnish with shaved chocolate and/or coconut flakes, if desired. Freeze for a couple of hours, then cover dish with foil and freeze overnight, or minimum of 4-6 hours, until the pie sets. This pie is meant to be served frozen.

TIP: NOT IN THE MOOD TO MAKE A CRUST? Turn this dessert into freezer fudge

Top with ½ cup/65g toasted hazelnuts or walnuts and freeze until solid (about 2 hours).

Sources: mynewroots.org, ohsheglows.com

PUBLISHER’S PICK

RAMEN NOODLES INGREDIENTS

2 gluten-free ramen cakes or nests

Half a carrot, shredded

One green onion, cut

1/8TEASPOON of salt

Pepper

DIRECTIONS

Garlic powder

Curry powder

Ginger

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

Add all ingredients to the Mason jar. Allow to sit for 5 minutes or until noodles are tender.

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.

The majority of American adults—approximately 75 percent—take supplements. So, it’s understandable that there are questions about whether supplements are really a good investment in your health and whether they really work.

In fact, some research questions whether popular vitamin and mineral supplements actually provide any health benefits at all. A study conducted by researchers at St. Michael’s Hospital and the University of Toronto suggests that the most common vitamin and mineral supplements “showed no advantage or added risk in the prevention of cardiovascular disease, heart attack, stroke or premature death.”

“Our review found that if you want to use multivitamins, vitamin D, calcium or vitamin C, it does no harm—but there is no apparent advantage, either,” says one of the lead doctors of the study, which was published in May 2018 in the Journal of the American College of Cardiology.

On the other hand, the researchers conceded that supplements of folic acid and B vitamins with folic acid may help reduce cardiovascular disease and stroke. But the overall tone of the research seemed to suggest that commonly used nutritional supplements did not really work.

So, is this true? Do nutritional supplements work or not? In order to understand the issue at hand, it is necessary to first understand exactly what supplements are and are not.

Supplements are not drugs. They may look like pills, but supplements are not drugs. They were never intended to treat or cure disease.

Supplements are supposed to be taken to compensate for any nutrients found in food that you may be lacking. Dietary supplements are products intended to be an add-on or extra, hence the name “supplement,” to your diet. They never were intended to replace food. In fact, it is far better to get your essential nutrients from whole foods such as fruits and vegetables.

As humans, we should get our essential nutrients from food. (We may get some vitamin D from the sun.) These nutrients include water, carbohydrates, fats, proteins, minerals and vitamins. The right balance of these nutrients goes a long way toward keeping us healthy and preventing diseases.

But some people may need extra help to meet their nutritional needs. So, if you eat food, why would you be missing out on critical nutrients?

1. IT MAY BE DUE TO A BAD DIET. Many Americans are overfed, which explains why more than one-third of U.S. adults are obese. But many Americans also are undernourished. If you eat a lot of nutrient-void processed foods, like white bread, chips, crackers and cookies, you are consuming a lot of calories but very few nutrients. And some people may just not eat enough. They may have just a coffee for breakfast or skip lunch at work because

2. IT MAY BE ECONOMIC. For example, children in some parts of the world lack access to food diversity, which makes them especially susceptible to

3. IT MAY BE THE DIRT. For a few reasons, the soil quality from which our foods are grown may not be that good. Poor soil quality may cause nutrient farming and technology, there is now an ability to yield a greater number of crops. The problem is the nutrient reservoir of most soils is not able to accommodate all of these extra crops.

4. IT MAY BE AN ABSORPTION ISSUE. The reasons why your body simply may have trouble absorbing nutrients from the foods you eat include older age, having a surgery such as gastric bypass, taking certain medications like oral contraception, gastrointestinal disorders or sensitivity, lifestyle habits like smoking and excessive alcohol consumption, genetics, existing medical conditions and many more.

The truth of the matter is that most of us have at least one nutritional deficiency. Frankly, there is evidence that many of us are simply unable to absorb adequate amounts of nutrients from the foods we eat. And when we are deficient in nutrients, we increase the risk for diseases such as hypertension, diabetes, obesity and many others.

So, is the research true? Do supplements not work?

I have reviewed the research information and concluded it may be misleading. For example, it is not clear to what degree the people who were the subjects of the research were already deficient in any of those nutrients mentioned in the research summary. To the extent that nutrient deficiencies were not clearly dealt with in the research, an intelligent conclusion cannot be made regarding whether supplements work.

We also do not know the quality of the supplements utilized. There are a variety of supplements on the market and effectiveness may vary depending on the incentive of the manufacturer to create scientifically based products. The delivery method of the supplement also may need to be varied depending on the needs of individuals who participated in the study.

Credible evidence, as well as my own experience, shows that proper use of the frequently used supplements identified in the 2018 study may play a critical role in helping you stay healthy. It is important to note, however, that staying healthy is not the same as preventing or treating a specific disease or condition. Sure, you increase your chances of preventing disease when you are healthy. But you may still get sick. You likely will get colds or possibly develop cardiovascular disease or even cancer.

However, you will increase your chances of fighting or recovering from these diseases if you are more nutritionally balanced. The real question is not whether supplements are valuable (they are), but rather when and how you use them as part of your proactive health program to help you be your healthiest.

The proof is in the pudding. Plenty of examples in the health and medical field show how supplementation is beneficial and, in some cases, may be lifesaving. For example, some children’s lives depend on whether they can get a vitamin A supplement.

Other valid uses of supplementation include: wound healing after surgery. Many of the patients in these studies received dietary allowance of this vitamin.

• Surgery recovery.

• Intravenous (IV) therapy. IV delivery of nutrients (and medication) streams materials directly into the bloodstream and is utilized in the hospital setting for treating patients. Intravenous fluids may contain potassium, glucose and sodium, which are electrolytes your body needs to function normally. Some consequential side effects.”

Research also has shown that specific groups of people clearly benefit from supplements and, in fact, supplements are recommended for them. For example:

• Vitamin D and calcium fracture rates in postmenopausal women.

• Synthetic folic acid pregnant, to reduce the risk of neural tube defects in newborns.

• for people over 50, since they may be less able than younger

• for pregnant women as recommended by an obstetrician or a competent health-care provider.

So, we see there are specific situations where vitamin and mineral supplements may be a valuable addition to our healthy routine. And there is also evidence that people who take supplements to meet their nutritional needs benefit from doing this.

“Scientific evidence shows that some dietary supplements are beneficial for overall health and for managing some health conditions. For example, calcium and vitamin D are important for keeping bones strong and reducing bone loss; folic acid decreases the risk of certain birth defects; and omega-3 fatty acids from fish oils might help some people with heart disease,” according to the National Institutes of Health.

But you have to supplement the right way. Remember that not all supplements are created alike or equal. Make sure to ask a competent health-care provider for recommendations about specific supplements and brands. Do not just pick up supplements at your local store. Get doctorrecommended supplements.

Also, be sure to read labels. When the label says, “proprietary blends,” for example, it means you don’t know exactly what is in the product. And don’t assume that just because a store calls itself a “drugstore” or “health food store” that its house brands are reliable. Look for indications that the products are good quality and tested by a reputable third party.

Remember that to supplement is not the same as to replace. You should first try to get all your nutrients, in the right amounts for your body, from good foods. For example, vitamins from food are usually better absorbed by your body. You may also want to consider taking a probiotic after taking certain long-term medications like antibiotics, in order to help ensure your digestive system is healthy and can provide a properly functioning landscape to receive nutrients.

Given all of this, how do you know if you’re getting enough of the vitamins and minerals your body needs?

The best and easiest way is to take a nutrient test. Once you have your results, your health-care provider can tell you what vitamin or other nutrient deficiencies or imbalances (it is possible to have too much of a certain nutrient) you may have and steps you can take to correct them. And keep in mind, some people with difficulty absorbing certain supplements like vitamin C may have to consider the use of liposomal technology or utilize IV therapy.

When used correctly to address a vitamin or mineral imbalance or deficiency, supplements can do wonders to help you be your healthiest.

Enjoy your healthy life!

Sources ods.od.nih.gov, phlabs.com, cdc.gov https://www.npr.org/sections/health-shots/2018/05/11/609149556/can-a-cocktail-of-vitamins-and-steroids-cure-a-major-killer-in-hospitals https://www.crnusa.org/newsroom/dietary-supplement-use-reaches-all-time-high-available-purhttps://m.medicalxpress.com/news/2018-05-popular-vitamin-mineral-supplements-health.html?utm_ source=nwletter&utm_medium=email&utm_campaign=daily-nwletter

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