Celiac Disease on the Rise: How Nebraska Farmers, Health Professionals, Businesses are Responding

Twenty years ago, gluten-free products were a rare occurrence on grocery store shelves. Many who adhered to gluten-free diets were forced to order things like bread and flour by mail or do without.

However, today nearly every grocery store carries items labeled as gluten-free, and it is not uncommon for restaurants to offer gluten-free pizza crust, pasta, bread or dessert. Gluten-free recipe blogs, bakeries, expos and brands also continue to grow in popularity.

But why the change? There has been a drastic increase in the number of people adopting a gluten-free diet—many as a result of celiac disease.

Celiac trends

Celiac is an autoimmune disorder characterized by a reaction to eating gluten—a protein found in grains like wheat, barley and rye. It results in damage to the small intestine and if left untreated, can lead to malnourishment, anemia, osteoporosis, and the onset of other autoimmune diseases.

According to Kim Hiser, a nurse practitioner at Gastroenterology Specialties in Lincoln, research from the past seven years has shown that the number of people with celiac disease per the U.S. population is anywhere from one in 133 to one in 141 people.

“But when you look overall—not necessarily the ratio of people—we are seeing more diagnoses, and if you look back 20 years, we’re seeing a ton more than what we saw in the past,” Hiser said.

Hiser was diagnosed with celiac in 2010. Shortly after, she developed a celiac clinic at Gastroenterology Specialties to be a resource to patients after they were diagnosed.

The trends in celiac diagnoses have been examined by many scientific studies in recent years.

A 2020 meta-analysis shows that incidence rates of celiac are increasing worldwide, with an average of 7.5% increase per year over the past several decades.

However, Hiser does not think this is because celiac disease is more prevalent in people now than in the past. She said the rise in diagnoses is partly due to the increase in testing, the improvement of the tests, and the understanding that people with celiac can be asymptomatic.

“Now we know that people can have a multitude of symptoms and have celiac disease or be completely asymptomatic, and you just happen to find it on lab work,” Hiser said.

Diagnosis and treatment

Celiac diagnosis involves a blood test followed by a biopsy of the small intestine through an upper endoscopy. The only treatment for celiac disease is adherence to a strict, gluten-free diet. However, people besides those with celiac follow this diet. Many avoid gluten because of an intolerance.

“Gluten intolerants are people that can have all of the exact same symptoms as someone with celiac disease, but when we do testing, we don’t see damage in their small intestine,” Hiser said.

Based on a Gallup poll, one in five Americans reports that they actively try to include gluten-free products like pasta and bread in their diet, and one in six say they avoid gluten altogether.

This has led to drastic growth in the gluten-free market, affecting local businesses making the food, as well as the farmers producing it.

Impact on farmers

Local businesses like bakeries specializing in gluten-free food depend not only on gluten-free customers but also the gluten-free grains for their flour. These include brown rice, oats, and sorghum, which has grown significantly in recent years.

Sorghum is an ancient grain similar to quinoa and millet in shape and texture. It is a drought-resistant, non-GMO crop and is considered by many to be the most wheat-like gluten-free flour.

“Between 2020 and 2022, we saw a 99% increase in sorghum acres planted in Nebraska,” said Nate Blum, chief executive officer for Sorghum United.

Before moving to his current position in January, Blum was the executive director for the Nebraska Grain Sorghum Board for four years. There he worked on education, market development, and research on sorghum in Nebraska. He helped farmers to discover the opportunities available in this market which had previously been in decline.

“Now, there is more demand than there is supply,” Blum said.

Although most sorghum in the U.S. is used for livestock feed and ethanol production, it is becoming more popular in the consumer food industry. According to the Sorghum Checkoff, the amount of sorghum used for human consumption increased by more than 250 percent from 2014 to 2019.

“A lot of the people in the industry that we talk to who are making products that are gluten-free are using sorghum and millets in their formulations,” Blum said.

Sorghum flour is commonly used in gluten-free pancakes, cookies and breads.

“I use it quite frequently,” said Phil Seng, owner of P.S. It’s Gluten Free, a home-based bakery in southeast Lincoln. “It’s one of the primary ingredients in my baguettes, hamburger buns and dinner rolls.”

Grains like sorghum are not just popular because of their gluten-free label but also their nutritional attributes. Nutritional deficiencies are common in people with celiac disease and those adopting a gluten-free diet, especially when they frequently turn to highly processed gluten-free products readily available at the grocery store.

“The stuff you buy at a grocery store is gluten-free, but then it’s also filled with a ton of preservatives so it can sit on the shelf,” Seng said.

Those following a gluten-free diet can also miss out on some of the nutrients, minerals and fiber found in products made with wheat.

“A lot of times, the processed foods are low in some of the vitamins that we would normally get if we were eating the equivalent in a gluten-containing form,” Hiser said.

The increased consumption of whole grains like sorghum can help provide some of these vitamins and nutrients that many gluten-free products could be lacking.

Rising demand and options

However, most gluten-free products utilize some sort of grain or flour, whether the product is on a grocery store shelf or inside a baker’s home. This has created a market for many farmers and gluten-free brands.

“We are seeing an increase in demand for people who want gluten-free products whether they are celiac or not,” Blum said. “There’s no reason why the industry shouldn’t continue to grow and provide another economic opportunity for farmers.”

According to a 2021 report from Grand View Research, the global gluten-free products market was valued at $5.9 billion and is expected to expand at a compound annual growth rate of 9.8% from 2022 to 2030.

Over the years, Seng has noticed substantial growth in the number of customers he serves and the number of items he bakes each year.

“Everybody seems to know someone who needs to be gluten-free for some reason,” Seng said.

Seng has grown his business mainly through word-of-mouth and farmer’s markets. Many gluten-free small businesses have also begun selling their products in stores in response to this increased demand.

It’s amazing to me how every time you go into the store, there are new products that are gluten-free,” Hiser said. “There are just millions of items that are gluten-free now.”

Many local and chain restaurants have also started to incorporate gluten-free options on their menus.

“More places these days seem to understand what (celiac) is and how to work around it,” Seng said. Seng has noticed this throughout the years when going out to eat with his wife, who was diagnosed with celiac in 2014.

Although eating out is a normal occurrence for many, it can prove to be especially difficult for those with celiac.

“It just makes it challenging—say if you are out to eat or if you’re traveling, or if you’re going to a family’s house for the holidays—you kind of have to plan ahead to know where you can and can’t eat,” Hiser said.

Future prospects

However, farmers, bakers and doctors continue to work to educate and provide options for people with celiac and others adhering to a gluten-free diet.

Blum is currently working on educational campaigns to help build markets that will encourage farmers to grow other crops like sorghum in their operations. However, he says instead of farmers selling sorghum as a commodity to grain elevators where they don’t have control over the market price, they can look for value-added processing plants that turn the crop into a product–facilities that turn strawberries into jam, lettuce into salad mixes, or grind sorghum into flour.

“If we can redefine how we do agricultural marketing in such a way that puts the farmers in direct contact with local processing rather than treating it like a commodity, I think that’s where they win,” Blum said.

Locating those specialty processors making different food products, especially in the gluten-free market, could enable farmers to get more dollars per bushel on their gluten-free grains.

“I think the more those products become popular, the more widely they will be carried by various stores,” Seng said. He currently has to go to four or five different stores in Lincoln every couple of weeks to get all the ingredients for his bakery items since no one store carries everything he needs.

But many grocery stores are progressively carrying more gluten-free brands, integrating gluten-free aisles, and even developing dedicated lines of private-label gluten-free foods.

“I think it’s a stable market, and it’s continuing to climb,” Hiser said. “You will find that people who have celiac disease really appreciate how much gluten-free food is available in the market right now because it opens up their options.”

Those working to contribute to this market appreciate both the financial benefit they can achieve and the customer response.

“People are just very thankful and supportive,” Seng said. “It makes me happy to be able to do that for people and that they appreciate it.”