Gluten-free for Life: Controlling the Autoimmune Cascade of Celiac DiseaseDec 28, 2020 09:28AM ● By Kara Schweiss
Photography by Bill Sitzmann
Nearly every day after eating lunch, Lianna Austin would experience debilitating migraines followed by profound exhaustion and sometimes vomiting. Her symptoms started when she was 5 years old, and over the next 10 years, visits to multiple medical specialists and myriad tests and trials of various dietary supplements yielded no answers.
“That was my life for a decade. Nothing would help,” Austin said. “It was so, so frustrating.”
Wendy Bredensteiner began losing weight two years ago. A few months later, intense abdominal pain landed her in the emergency room. Her gallbladder was removed later, but digestive symptoms persisted and she continued to effortlessly lose weight, which began to concern her. Several tests over the next year revealed other gastrointestinal (GI) tract problems, including abnormalities in her small intestinal villi.
“It wasn’t until I started losing a lot of weight without trying that anyone even noticed,” Bredensteiner recalled. “I’d learned to live with the stomach pain.”
The diagnosis for both Austin and Bredensteiner: celiac disease. And the treatment? A strict gluten-free diet.
“True celiac disease, as I describe to patients, is an autoimmune disease,” said Dr. Joshua T. Evans of Midwest Gastrointestinal Associates. “If you eat gluten, it sets off this autoimmune cascade where you make antibodies against your own (small) intestine, and it interferes with the lining of the intestine such that you can’t absorb food and nutrients properly.”
A diagnosis of celiac disease, to which both Austin and Bredensteiner can attest, can be elusive. According to advocacy organization Beyond Celiac, more than 300 symptoms can be associated with the condition.
“Not all the symptoms of celiac disease are related to the GI tract,” Evans said. “There are extraintestinal manifestations of the disease like skin and hair changes. A lot of patients will present with migraines and there are certain dermatologic manifestations or skin diseases (including dermatitis herpetiformis) that are associated with celiac disease as well.”
“I was diagnosed at 50, but I suspect I’ve had celiac for several years. Twenty years ago, one doctor suggested I might have irritable bowel, but I never pursued it and nothing came of it,” Bredensteiner said, adding that she realized later that other medical symptoms she experienced like osteopenia and dental issues also pointed to celiac disease. “Celiac looks a lot like food allergies and a lot of the symptoms are innocuous.”
Austin was finally tested for celiac disease after a family member who also had persistent and mysterious health issues was diagnosed. Her own diagnosis, she said, brought a sense of relief.
“It was such a turning point in my life. I had to follow this diet, but it was finally an answer and I knew there actually was something wrong with me,” she said, adding that she saw her health improve within days of going gluten-free.
“I knew I was not healed by any means, but I knew in that first week that there was a difference,” she said. “It makes sense: you’re not consuming something your body hates all the time, at every meal. It was life-changing.”
Evans said that although numerous studies around potential medications for celiac disease have taken place over the years, none have panned out—yet. “So far, the only proven treatment option, at this time, is a gluten-free diet.”
Gluten is found in wheat, rye, and barley and is used in many foods from the obvious (pasta and bread made from wheat flour) to the not-so-obvious (soy sauce and beer). Gluten can also be found in some cosmetics, personal care products, vitamins and supplements, and even modeling dough made for children to play with. People with celiac disease have to be vigilant, Austin and Bredensteiner said. Just cutting back on gluten consumption isn’t enough. And labels don’t always clearly identify gluten-containing substances like malt vinegar or brown rice syrup made with barley enzymes.
Practicing gluten-free eating “is not just a diet,” Austin said. “It’s a lifestyle. We can’t take a day off. We can’t have a cheat meal. And along with how hard a gluten-free diet is, I think the hardest part is managing cross-contact.”
Her husband of less than two years, like most people, does not have to eat gluten-free, Austin explained, so the couple has to be scrupulously careful about keeping food preparation areas and food separate so crumbs and residue containing gluten don’t make their way into Austin’s food. “We basically make our own meals in a shared kitchen,” she said.
“While some people say, ‘It’s simple: Avoid gluten and you’ll be fine,’ It’s not that easy,” Bredensteiner said. She has several food allergies, but said she’s found that staying away from gluten is different than abstaining from mustard and pineapple, or even soy and sulfites. “Gluten is in what seems like everything. My latest offender? My bite guard I wear at night.”
Celiac disease can create awkwardness in social situations, she added.
“Someone brings donuts to the office? None for you. Dinner out with family? Unless you carefully select a restaurant, none for you. Only a few minutes for lunch so you want to drive through somewhere? None for you. Dropping in at a friend’s for an impromptu drink? None for you. Cross-contamination is a real thing. No, you can’t put your gluten-containing crackers on the same plate as my gluten-free ones,” she said. “Being celiac is very isolating. I had no idea.”
Even people diagnosed with celiac disease who don’t experience severe symptoms need to stay away from gluten completely, and it’s a lifelong commitment, Evans said.
“It’s important to adhere to a gluten-free diet not just to make you feel better, but because it’s important to decrease your long-term risk of malabsorption to prevent manifestations like premature osteoporosis or iron-deficiency anemia,” he said. “There’s also a small increased risk of small bowel cancers—in particular, lymphomas—which is associated with longstanding untreated celiac disease.”
If a person suspects celiac disease in themselves or is a caregiver to a family member with symptoms, it’s important to seek a medical diagnosis, Evans said. Also, the patient needs to not be on a gluten-free diet at the time of testing for results to be accurate.
“There are several antibody tests—blood tests—available which have improved over the course of the past decade or so. They’re now at least 90% accurate at diagnosing celiac disease. Of course, I see the one in 10 or one in 20 patients the test misses. And what it doesn’t tell you is how severe (the disease) is,” he said. “The best test for celiac disease is to take a biopsy of the first part of the intestine called the duodenum. That’s accomplished by performing a standard upper endoscopy where we take a small camera and go down through the mouth through the esophagus, past the stomach, and into the first part of the small intestine. It’s a short, five- to 10-minute outpatient procedure that’s done while the patient is under sedation.”
He added, “It’s really not possible to self-diagnose celiac disease…If patients go on a gluten-free diet and they have an improvement of their symptoms, that’s not diagnostic of celiac disease.”
People with other conditions such as gluten-sensitive irritable bowel syndrome (IBS) may experience improvement in symptoms on a gluten-free diet, he explained.
“Irritable bowel syndrome is a combination of abdominal pain and a change in bowel habits that’s very common. It is usually in some way—not always, but usually—related to stress and anxiety,” he said. “These patients will have symptoms similar to celiac disease: abdominal pain, bloating, changes in bowel habits, increased gas. But they do not have the true autoimmune phenomenon of antibodies being made against their own intestine. That’s a big, important distinction to make.
“Patients will come to me and say, ‘I feel better when I don’t eat gluten,’ even when they don’t have celiac disease. And I never argue with that, because dietary modification is one of the treatment options for irritable bowel syndrome. But if they have true celiac disease, they are at risk for complications including malabsorption of nutrients such as vitamin B, iron, magnesium, copper, and vitamin B-12, and these patients need to be monitored.”
According to the Celiac Disease Foundation, approximately only one in 100 people worldwide have celiac disease. If the population of Omaha (468,000) represented the number of people worldwide, then the population of Wahoo (4,500) would represent the number of people with celiac disease.
Increased awareness may suggest that the disease is on the rise but “the data remains to be determined,” Evans said. “The diagnosis is on the rise, due to a few things, mainly increased disease-state awareness and also because of the availability of a gluten-free diet; it’s easier to follow a gluten-free diet than it was 20 years ago.”
It’s easier than ever to find certified gluten-free products as awareness of celiac disease increases, but Bredensteiner said accurate understanding of the disease itself lags behind.
“Some people choose to eat gluten-free or ‘gluten-friendly’ because they think it’s healthier,” Bredensteiner said. “While I’m grateful for the ‘trend’ because companies have responded to the demand by creating more celiac-safe foods, it also makes me a bit sad. Because while those who choose it can also stop choosing it, I will never, ever be able to pop into any place I want and eat a regular meal. I no longer have that luxury. The fact that some people choose it also casts a little shade on those of us who have no choice. Many a server or sometimes even the chef from the kitchen will ask, ‘Is it an allergy or a choice?’ Actually, it’s neither, but I go with ‘allergy’ because they at least take that seriously.”
In the years since being diagnosed with celiac disease as a teen, Austin has advocated for celiac disease awareness. She interned in college for the organization now known as Beyond Celiac, and as a past Miss Nebraska candidate, and now as Mrs. Nebraska American 2020, she speaks about her experiences and promotes healthy living.
“Of course not everyone has celiac disease, but everyone can make healthy choices. I really believe that nutrition is a game-changer for everyone,” she said. “I have the opportunity to use this crown as a megaphone to help others.”
She’s also started a “Stronger Than Celiac” blog (liannaaustin.com) this year. In her introductory entry, she talks about how a recent accidental ingestion of gluten triggered an overpowering reaction that knocked her down for a week.
“It was a confirmation for me that this is serious and it’s such a difficult situation to manage and monitor every day, every bite,” she said. However, whether she’s speaking to an audience of schoolchildren or having a casual personal conversation, Austin said she strives to be positive about her diagnosis and even the rigors of a gluten-free lifestyle. “A gluten-free diet has been the key for me to live again.
“I always make it a mission to say, ‘This is a blessing.’ Because for me it was a missing puzzle piece. I had been sick every single day for 10 years, not knowing what to do,” she explained. “I know there are so many people out there who are silently suffering. They either have been misdiagnosed with something that is not going to help them because they’re not following a gluten-free diet, or they’re left undiagnosed without answers, not knowing if they’re making this up in their mind, if people are taking them seriously, and they’re still searching for that diagnosis.”
Austin said she advises people to see a physician if they have symptoms that suggest possible celiac disease.
“My answer is, always, ‘Seek professional medical help. Get tested.’ Because then you know you are moving forward with the best plan for your health,” she said. “Knowing what you have will be helpful for the rest of your life. And you can change the end story.”
“I’m only 16 months in on this new journey. I’m told it will get easier,” Bredensteiner said. “I know a whole lot more and am learning new things every day.”
Visit celiac.org for more information.
This article was printed in the January/February 2021 edition of Omaha Magazine. To receive the magazine, click here to subscribe.