When Fox 4-Kansas City news anchor John Holt was diagnosed with celiac disease in 2004, he realized he was one of the millions of people who have the disease but don’t know it. Medical professionals estimate that more than 3 million individuals in the US have celiac disease, but about 83% are either undiagnosed or misdiagnosed. In individuals who do not show symptoms, the disease is referred to as Silent Celiac or Asymptomatic Celiac.

Celiac disease can be detected with a blood test.

Silent Celiac: “I had no symptoms"

"But, after several annual physicals, my doctor noticed that my iron levels were declining,” said John. “He ordered blood work, a colonoscopy, and an endoscopy.”

The tests revealed that John had silent celiac disease, something that neither he nor his wife, Suzy, were familiar with.

“I’ll never forget the conversation,” John said. “My doctor told me there is no cure and then he starts going over all the dos and don’ts and I said – ‘Time out – can I have red wine?’”

They laughed and John was relieved that red wine does not contain gluten, but it taught him that he needed to educate himself about how to live with his silent celiac disease.

No symptoms, but still damage

Even though John continues to be asymptomatic – he does not exhibit any of the classic digestive symptoms of celiac disease such as diarrhea, nausea, abdominal pain – he learned that his body is still affected by gluten. Repeated exposure to gluten damages the tiny, hair-like projections (villi) that line the small intestine causing poor nutrient absorption. It can also lead to cancer and other diseases.

“If I had a piece of bread or a beer, I would not get sick,” John said, “but I knew that over time my immune system would break down.”

Going gluten free

Based on these facts, John and Suzy both decided to go gluten free, but that was easier said than done. First, they had to become aware of what was in the foods they liked, so they learned to read labels. In 2004, there weren’t a lot of gluten-free options at grocery stores other than Whole Foods, which was typically more expensive.

Then they had to figure out how to go out to eat. “There weren’t any menu items that were labeled gluten-free. When we’d ask if there was gluten in the dish, the server’s eyes would glaze over,” he said. “They had no idea. So, we’ve learned how to adapt certain items like salads – just ask them to take the croutons out – and I know to ask if a soup is thickened with flour or cream.”

It got easier

But around 2010, the availability of gluten-free products began to change as celebrities began adopting gluten-free diets. Other consumers began adopting gluten-free diets too. The gluten-free food and beverage industry grew substantially and the Holts found that suddenly there was much greater availability of gluten-free products at a multitude of grocery stores.

Dining out became easier too. “Now there are gluten-free menus and servers know how to find out if a dish contains gluten,” said John.

John says that the taste and texture of gluten-free food has gotten so much better over the 17 years since he was diagnosed. He remembers bread falling apart when he tried to make a sandwich, but now he can’t tell the difference.

General awareness about celiac disease and the need for special diets has increased too. Recently John and Suzy were the event chairs at the University of Kansas’ Rock Chalk Ball. He was concerned about the menu, but the event planners told him that rather than provide special meals for a few people, they would just have a completely gluten-free menu. No one would know!

Celiac disease in the family

Picture of John Holt (who has celiac disease) with his wife and grandson (who also has celiac disease).

More recently, John learned that celiac disease can run in families. His grandson, Mark, has celiac disease too.

Unlike John, who continues to show no symptoms with his silent celiac, Mark is very sensitive. His family has to be careful about cross contact, and his mother packs food specifically for Mark when the family goes out to eat.

“His symptoms are almost textbook,” says John. “But he’s a good sport about it.”

But one thing that has not changed is the expense of gluten-free food. The Holts say they are blessed to be able to absorb the extra cost of gluten-free foods which can be 200-1000% higher than conventional food. They recognize that not everyone can afford it; that is where Food Equality Initiative steps in.

“The work Food Equality Initiative is doing to support those who can’t afford to absorb the higher costs is amazing. And frankly, could prove to be a life saver in the long run for many of these families.”

When getting your annual check-up, John recommends:

Get your blood work done. Make sure they check your iron levels. That’s how I discovered that I have celiac disease.

For anyone diagnosed with celiac disease, John recommends:

Take your diagnosis seriously. Learn to read labels. You will be surprised at the items that contain gluten.
Consider having the family go gluten free. My wife chose to go gluten free too because she did not want to take a chance with cross contact and she did not want to have to make separate meals.

Silent Celiac