A Vermont ER Doctor Takes On Often Missed and Misunderstood Celiac Disease

When Martin Linseisen began experiencing numbness in his legs, he couldn’t figure out what was causing it, despite having spent years as an emergency room nurse practitioner and, before that, as a registered nurse. His doctors were at a loss, too. They sent him for repeated MRI scans of his head, neck and back and screened him for various neurological conditions, including multiple sclerosis. None could pinpoint the source of his ailment.

Six years later, in 2012, Linseisen became an MD. That was also the year he started having severe abdominal pains and other digestive issues, and his gastroenterologist ordered a blood test and an endoscopy. He diagnosed Linseisen with celiac disease, a chronic disorder caused by eating gluten, a protein found in wheat, rye and barley. There’s no cure for celiac, and the only treatment is to adhere to a strict gluten-free diet.

Today, Linseisen works as an emergency services physician at Copley Hospital in Morrisville. His wife, Helen Osborne Linseisen, is a family nurse practitioner. About five years ago, the couple founded Celiac Friendly Professional Consultants, which aims to help other Vermonters with celiac disease live healthier and happier lives.

As the incidence of celiac grows worldwide, the Linseisens are offering consultations to individuals, families and institutions, using their family’s experiences to raise public awareness and dispel common misconceptions about the disease.

“Celiac disease is not an ‘allergy.’ It’s a multisystem, multi-organ autoimmune disease.” Dr. Martin Linseisen

Linseisen’s six-year ordeal in getting diagnosed with celiac is fairly common, he said. Patients may suffer for a decade or more before they discover what’s causing their distress. The most common symptoms are gastrointestinal complaints — severe cramps, nausea, constipation and diarrhea — but celiac can also present as anemia, osteoporosis, skin rashes, anxiety, depression, irregular periods and miscarriages. Some patients have no outward symptoms at all.

Yet undiagnosed celiac can wreak havoc on the body, Linseisen said, often without the person knowing it. Because gluten damages the villi, or hairlike structures in the small intestine that absorb vitamins, minerals and other nutrients, celiac patients can develop signs of malnutrition.

Linseisen, who’s 52, had a bone density scan three years ago. He was stunned to learn that he had borderline osteoporosis, equivalent to the bone health of an 83-year-old woman.

“People think it’s merely a gastrointestinal disease,” he said. “Celiac disease is not an ‘allergy.’ It’s a multisystem, multi-organ autoimmune disease.”

Celiac afflicts about 1 percent of the population, or 3.3 million Americans, as many as 97 percent of whom are undiagnosed, according to data from the University of Chicago Medicine Celiac Disease Center. That makes it more common than epilepsy, cystic fibrosis, Crohn’s, Parkinson’s and MS.

Though celiac is not inherited, it has a strong hereditary component. According to the Center for Celiac Research and Treatment at Massachusetts General Hospital, first-degree relatives — parents, siblings and children of those with celiac — have an 8 to 15 percent greater likelihood of having it, too.

Both of Linseisen’s sons have genes that correlate with celiac. His younger son, 15, was diagnosed with celiac when he was 10.

Linseisen’s older son, 18, doesn’t have the disease, but he will need to be retested every year to make sure it doesn’t develop. Many people believe that celiac only appears in childhood, but in fact, someone can be diagnosed with it well into their eighties.

Not everyone who is genetically predisposed to celiac disease develops it. Researchers now suspect that environmental factors also play a role, such as the timing of infants’ exposure to gluten and whether they’re breastfed.

Another recent area of research, Linseisen said, is the microbiome: trillions of microbes in the human gut that play a critical role in digestion. Researchers are only starting to understand their impact on health, nutrition and the body’s immune system.

Because the only treatment for celiac is eliminating gluten entirely from one’s diet, it’s one of the more difficult chronic conditions to manage. A 2014 study published in the American Journal of Gastroenterology found that, while celiac patients were healthier overall than patients with other chronic conditions, such as hypertension, diabetes and congestive heart failure, the daily burden of managing the condition was second only to that of dialysis patients.

Linseisen explained that adhering to a gluten-free diet isn’t as easy as it might seem. While restaurants and stores now offer an abundance of gluten-free options, they tend to be more expensive than conventional foods without necessarily being healthier, due to their frequent dearth of fiber and surplus of sugar, fat and additives.

Another common concern, Linseisen said, is cross contamination. Some products labeled gluten-free are still processed with equipment that’s been exposed to gluten. Helen Osborne Linseisen maintains a list of food manufacturers she’s contacted to verify how their products are made.

Cross contamination can also occur in restaurants. Though many pizza places now offer gluten-free crusts, the Linseisens rarely go out to eat anymore.

“Flour stays in the air for 24 hours,” Martin Linseisen said. “Someone with celiac disease can’t go to a pizza place. It’s ridiculous! But the general public would think otherwise.”

Though Linseisen has had only three or four such exposures since his diagnosis a decade ago, the experiences were gut-wrenching enough that he has no desire to repeat them.

“I felt like my stomach was being ripped apart,” he said.

Others, however, have what’s called “silent celiac.” Among them is Lois Blaisdell, who owns the gluten-free West Meadow Farm Bakery in Essex Junction.

In the late 1990s, Blaisdell was suffering from anemia. Her doctor couldn’t figure out why, so she went to see a gastroenterologist, who diagnosed her with celiac disease in 1997.

In 1999, members of Blaisdell’s local celiac support group were invited to participate in a nationwide study conducted by Alessio Fasano, an Italian-born researcher based at the University of Maryland School of Medicine. In 1996, Fasano founded the Center for Celiac Research and Treatment, which he still directs, now at Mass General.

Fasano was interested in the genetic component of celiac, so the researchers invited Blaisdell to get her immediate family tested. Her daughter Sarah, then 15, was a vegetarian and self-described “picky eater” whose incessant stomachaches were starting to affect her grades.

“It got to the point that I was in so much pain, I felt as though I couldn’t even stand up,” Sarah wrote on the West Meadow Farm Bakery website. “I never told anyone, so I secretly hoped this test was going to be the answer to my problems.”

Both Sarah and her grandmother tested positive for celiac.

Lois, who had an academic background in nutrition, threw herself into cooking and baking gluten-free foods for her family and other members of her celiac support group. By 2003, she’d accumulated enough recipes to open the gluten-free bakery in their home.

In 2009, Lois moved the business to Essex Junction. Now a certified gluten-free bakery, West Meadow supplies baked goods to local restaurants, City Market, Onion River Co-op; Hunger Mountain Co-op; Middlebury Natural Foods Co-op; and the University of Vermont Medical Center. Sarah has become an integral part of the business.

Though the Blaisdells have never formally surveyed their customers, Lois estimated that 70 to 80 percent of them have celiac disease, a non-celiac gluten intolerance or another food sensitivity, such as egg or lactose intolerance, to which West Meadow Farm also caters.

“The rest just like our products,” she added.

Despite the small but growing number of gluten-free establishments in Vermont, celiac disease often leaves families feeling socially isolated, Linseisen noted. He brings his own meals and snacks to work because he can’t eat in the hospital cafeteria. He doesn’t participate in workplace parties where food is served. When he travels, he can’t grab meals on the road because he doesn’t know whether it’s safe.

“We don’t get asked to go to someone’s house for dinner anymore,” he said. “If my son goes on a school trip and they stop for pizza, he can’t eat with the group.”

But celiac patients may not feel quite so isolated in the future. The prevalence of the disease is growing, Linseisen said, and not just because health care providers have become more aware of it. Last June, researchers in Italy reported on their study of a group of schoolchildren, among whom they found double the number of cases of the disease that were seen in a similar study 25 years ago.

Those numbers are consistent with research around the world. Among the reasons that have been suggested for the increased prevalence of celiac are the feeding of gluten to infants, the greater use of antibiotics and the less frequent exposure of children to microbes in general, which may cause their immune systems to overreact when they get older.

As an ER doctor, Linseisen said he regularly encounters patients whose complaints are consistent with celiac but who’ve never been diagnosed. He recommends they get a blood test. If it comes back positive, their doctor should order an endoscopy to confirm the diagnosis. Linseisen suggested that patients be seen six months after their initial celiac diagnosis and once a year thereafter.

Why? As he explained, having celiac puts a person at heightened risk for other autoimmune diseases — he has three — and for serious conditions such as small bowel cancer, pancreatitis and cardiovascular disease.

Linseisen is not anti-gluten per se, nor does he advocate that everyone give it up, as some popular diets recommend. But he emphasized that people with celiac shouldn’t believe that they can “cheat” every now and then just because they experience no physical reaction.

“You can’t adjust your diet … If your bones are getting brittle, you can’t feel that,” Linseisen said. “You have to take an all-or-nothing approach, because you might not know the damage you’re causing yourself.”

The original print version of this article was headlined “Gut Instincts”