Living Well: Celiac disease needs to be taken seriously

When Eric Oemig's father died in late 2000, at age 67, doctors hadn't figured out the type of cancer that killed him, despite locating a "large mass of tumors" in his abdomen. What the physicians discovered after the older Oemig's death is he suffered from celiac disease.

Celiac disease is a genetically influenced condition that renders a person intolerant to gluten, which is found in wheat, barley and rye.

Researchers debate whether the gluten in oats causes similar body reactions. Eating gluten leads to an improper immune system response, damaging the inner lining of the small intestine and blocking nutrient absorption.

"I went on a gluten-free diet after my dad died," said Oemig, 36, who lives in Kirkland. "I didn't wait for any doctor's orders. Nine months later, I was officially diagnosed with celiac disease."

Oemig's diagnosis experience with his general practitioner is not the type of thing medical schools want to drop into their recruitment brochures, but it might make a good what-not-to-do case study in the curriculum.

While Oemig convinced his reluctant physician to perform the blood test that can identify celiac disease, the doctor's office never called with the results. Oemig had to call to find out he did, in fact, test positive for celiac and then received a perfunctory response.

"My doctor said, 'Oh, yeah, you have it,' " recalled Oemig. "He told me to try to cut back on my gluten, but that it was no big deal, that it wouldn't kill me or anything."

Oemig switched doctors in short order. He now sees a naturopathic physician for general care.

Under-diagnosis of celiac disease is far too common. That's not just the opinion of a Portland friend of mine, a naturopathic physician who wrote her thesis on celiac disease several years ago. Or patients like Oemig, who designed the Web site for the Seattle Celiacs support group (www.seattleceliacs.com), which meets from 7 to 9 p.m. every third Tuesday of the month in Bellevue.

Celiac disease has officially earned a spot on the mainstream medical map. In late June, the National Institutes of Health issued a consensus statement on celiac after three days of hearings and presentations on all available scientific evidence. The panel concluded that celiac disease is significantly under-diagnosed and may affect up to 3 million Americans or 10 times previous estimates.

What's more, the panel found that, on average, a patient endures 11 years of symptoms before an accurate diagnosis.

The NIH panel called for greater physician and public awareness and earlier testing. Blood tests for gluten intolerance and celiac disease have improved in recent years.

As it turns out, creating physician and public awareness will be the so-called easy part. Making a correct and effective diagnosis will be more challenging for doctors and patients alike.

"Celiac disease has confounding factors," said Dr. Jamey Wallace, a naturopathic physician and clinical medical director at Bastyr University in Seattle. "It can present in numerous ways. We call it a moving-target disease."

Classic symptoms include diarrhea, abdominal pain, gas, bloating and weight loss. However, experienced practitioners such as Wallace recognize that other symptoms -- blistering, itchy skin rash, anemia, short stature, infertility and tooth enamel defect -- can point to celiac disease, too.

The NIH panel indicated that people with atypical symptoms might outnumber those with digestive involvement. Wallace even has consulted with patients whose behavior and depression symptoms change dramatically when gluten is consumed.

Dr. Stephen Wangen, a Bastyr-trained naturopathic physician in Bothell, discovered celiac disease while reading a textbook as a medical student. He linked his own symptoms -- chronic digestive problems and itchy skin -- to the illness. His teaching doctors at Bastyr confirmed his hunch and diagnosed him with celiac disease in 1996.

"I always thought my digestive problems were stress-related," said Wangen, whose first career included some high-pressure positions in hazardous waste removal at facilities throughout the world. "I stopped eating gluten and my symptoms cleared in two days."

It's estimated that about 5 percent of Americans have gluten intolerance, compared to the 1 percent with celiac disease and its related nutrition malabsorption, which can lead to bone-thinning osteoporosis. Non-celiac people will endure milder yet persistent symptoms, such as digestive upset and skin itchiness.

About 50 percent to 60 percent of the time, eliminating gluten will spur dramatic improvements. But a number of Wangen's patients still have symptoms. He typically recommends eliminating dairy and sometimes eggs or nuts to see if those foods trigger such problems as diarrhea and sinus drainage.

"Food can cause a hundred different problems," said Wangen. "Dairy is the biggest issue among my patients."

If the NIH consensus panel meets its mission, more physicians will make food allergies, especially the life-altering repercussions of celiac disease, part of a complete diagnostic workup. That progressive step is yet to be played out. Let's hope our medical community takes note and takes it seriously. We all benefit from better connecting food and health.

Meanwhile, Oemig, for one, has noticed some positive changes since he went gluten-free in 2001. For example, Seattle is a haven for vegetarian restaurants, many of which offer gluten-free meals and baked goods. Two delectable highlights: Kaili's Kitchen, an all-gluten-free restaurant in Edmonds, and the Flying Apron Organic Bakery in the University District. Plus, Oemig, says the current big diet trend has abetted gluten-free seekers.

"The Atkins diet has made it a lot easier to ask for gluten-free meals in almost any restaurant," he said. "There are all sorts of bunless burgers and sandwiches. You don't have to feel funny about asking to hold the bread."

Bob Condor writes every Monday about health and quality of life. He is editor of the Seattle-based Evergreen Monthly, which covers health, environment, food, social good, spirituality and personal growth (visit www.evergreenmonthly.com). Send e-mails to bobcondor@aol.com with any questions or ideas for the Living Well column.

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