Celiac disease: An elusive diagnosis

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Celiac disease is on the rise, according to Dr. Alberto Rubio-Tapia, assistant professor of medicine at the Mayo Clinic in Rochester, Minn., who has been involved in studies on the disease.

“Unfortunately, most people with celiac disease remain undetected,” he said in an email.

The disease is difficult to accurately diagnose because there are more than 300 symptoms, and some people may experience no symptoms at all, the National Foundation for Celiac Awareness reports.

Symptoms may vary among people, the foundation states. One person might have diarrhea and abdominal pain, while another person has irritability or depression.

Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood.

In those patients with no symptoms, the undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms. However, these people are still at risk for the complications of the disease.

The foundation states 3 million Americans have celiac disease but only about 5 percent of them are accurately diagnosed.

Prevalence increases four-fold

Celiac disease is more frequent now than 50 years ago, Rubio-Tapia told the Herald. “We estimated that celiac disease prevalence has increased four times in the last 50 years.”

A growing awareness of the disease and clinical detection has contributed to that increase, he said.

Reasons for the higher frequency will require more study, he said. But it is most likely due to “a change in the quantity, quality or processing of gluten-containing foods.”

Dr. James Wood, a gastroenterologist with Altru Health System in Grand Forks, echoed Rubio-Tapia’s viewpoint that the incidence of celiac disease is definitely on the rise.

With the blood-testing that’s available now, more people are being diagnosed, he said. “The disease is actually becoming more common.”

He also cited greater public awareness and increased testing by physicians for the upswing in diagnoses.

Celiac disease can affect men and women of any age or race, but there are factors that can increase one’s risk of developing this autoimmune disorder, in which the body basically attacks itself.

“There is some sort of genetic component and, likely, multiple environmental factors,” Wood said. “If you have the right genetic make-up and you’re exposed to gluten, you’ll have a reaction.”

Celiac disease has been diagnosed more frequently in women than men, by a factor of 2 to 1, Rubio-Tapia said. “However, population surveys suggest that the prevalence of celiac is the same in men and women, perhaps lack of clinical detection is higher in men.”

There’s no evidence to suggest it’s a gender-based disease, Wood said.

“How you manifest it is another component,” he said. “How your body copes with the reaction differs” among patients.

“Frequently, we find people with no discernible symptoms. More often, the patient presents with severe diarrhea and weight loss.”

A misdiagnosed disease

In the past, celiac disease may have been misdiagnosed as irritable bowel syndrome, or anxiety and depression.

“Celiac symptoms are attributable to a lot of different things,” Wood said. Bloating and abdominal and joint pain are common signs.

Health providers need to keep celiac disease in mind as a possibility when making a diagnosis, he said. Increased awareness is leading physicians to look for the disease, and patients may be more inclined to ask about it.

These days, “we know more about the disease,” he said. Usually patients are diagnosed in their 20s, 30s and 40s.

“I’ve even seen it first presented in patients in their 70s,” he said. “You have to propose they probably had it for a long time.”

Wood has also seen the disease in infants, who exhibit signs of “failure to thrive” as an early indicator.

“The symptoms are so varied and, in many cases, vague that patients really need to get tested,” he said.

People need to understand that, “in most patients, it’s a fairly mild disease,” he said. “The severe symptoms show up in a minority of patients.”

He discourages people from “self-diagnosing” .

“The diet is expensive and hard to follow,” he said. “Before you go to that hassle or commit to that change, get diagnosed. It’s not a difficult diagnosis to make now.”

‘Gluten-free paradox’

Rubio-Tapia and his colleagues estimate at least 1.6 million Americans are on a gluten-free diet, most of them without a diagnosis of celiac disease, he said. “At the same time, 1.8 million of residents of the United States have celiac disease, most of them without a clinical diagnosis.

“So, we discover a gluten-free paradox, people who need most the gluten-free diet don’t know they need it, and a similar number of people are following a gluten-free diet without a clear medical indication.”

He also discourages self-diagnosis “because of the serious health implications of a diagnosis of celiac disease,” he said. “Research has shown that self-diagnosis of celiac disease is often incorrect. Gluten-free diet is low in fiber, and it is not fortified.”

Long-term consequences of eating a gluten-free diet, for those who don’t need it, are unknown, he said. Starting such a diet without medical indication will make it more difficult for the physician to confirm, or rule out, the diagnosis of celiac disease, or may delay the diagnosis of an alternative and potentially serious disorder related to the symptoms.

Two different things

Celiac disease should not be confused with gluten-sensitivity or gluten-intolerance, said Mary Bratrud, a licensed practical nurse who works with Dr. Mirza Baig, a gastroenterologist at RiverView Health in Crookston.

Bratrud also is the facilitator of the celiac support group which meets monthly at RiverView.

With celiac disease, the villi, tiny finger-like structures that play a role in nutrient-absorption in the small intestine, are damaged. Patients with the disease cannot safely consume any gluten at all.

If they do happen to ingest gluten, it’s “an assault on the gut” that takes the body three months to heal, she said.

People who are gluten-sensitive can consume amounts only to their individual level of tolerance.

Bratrud said she and her colleagues monitor celiac patients to determine “how they might be getting gluten in ways they’re not aware of,” she said. There’s a good deal of “hidden gluten,” even in products such as toothpaste and medications.

Eating a gluten-free diet “is hugely a commitment, health-wise and economically,” she said.

In some ways, it could be termed, “the diet of the elite” because of the high cost, she said. “Our macaroni and cheese maybe costs 99 cents, theirs is $3.50. We buy 10 pounds of flour for about $3, they pay $10.99 for a pound.”

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