Living with Celiac disease

MELBA TSCHIRLEY would get diarrhea right after she’d eat. Jackie Geddes puzzled doctors with recurring anemia but no other symptoms. Mike Fuller broke out in a rash after meals. All three Inland Northwest residents have celiac disease, also called celiac sprue. Their bodies cannot digest gluten, a protein found in wheat, rye, barley and possibly oats.

Celiac sprue once was thought to be rare, affecting only one in about 5,000 people. Now, Tschirley and other celiacs want people to realize that it is much more common than that.

“The number we quote is one in 200 adults in North America probably have sprue,” said Dr. Mike Kestell of Spokane Digestive Disease Center. It is more common among people of Northern European descent.

In Ireland, Kestell said, the number is closer to one in 40.

Sprue also affects children. While some are diagnosed as infants or toddlers because of poor weight gain, many more may go undiagnosed for years.

Kestell said a recent study of school-age children in Italy found that of approximately 3,500 children, about 1 percent tested positive for sprue. Among those who tested positive, almost 40 percent had no symptoms.

But even if they’re not showing symptoms, gluten is wreaking havoc on a celiac’s small intestine and may be contributing to other medical issues. As widespread as it is, Tschirley said too many people with celiac disease are being misdiagnosed.

Many celiacs are first diagnosed with fibromyalgia or irritable bowel syndrome.

“Some physicians still are not making the diagnosis,” Tschirley said.

Kestell, a gastroenterologist, agreed. “I’m not sure that we’ve done a good job of educating the medical profession that this is so prevalent and so easily diagnosed,” he said.

Just last week a panel of medical experts told the National Institutes of Health essentially the same thing and urged the federal agency to launch a major education campaign about celiac disease.

Today, blood tests for sprue are about 95 percent sensitive, Kestell said, making it a lot easier to diagnose sprue than in the past, when patients suspected of having celiac disease would have to undergo anesthesia and biopsies of their small intestines.

One of the challenges for doctors is recognizing that what they probably learned in medical school about sprue isn’t the only way the disease presents itself.

Celiac disease is often “glossed over” in medical school, Kestell said. Doctors in training typically learn celiac disease causes diarrhea and weight loss. But that’s not always the case.

“We see people who are overweight who have sprue,” Kestell said.

Some have only a mild gluten intolerance, some more drastic. In some patients, like Geddes, it presents only as low iron counts. Kestell said premenopausal women often suffer from iron deficiency, which is blamed on the hormone changes.

“I’ll bet there’s more sprue there than what’s being recognized,” he said.

Others, like Fuller, may develop a rash called dermatitis herpetiformis.

Because sprue disrupts the body’s ability to absorb nutrients, including iron, vitamin D and calcium, “things beyond just diarrhea can happen,” Kestell said.

Sprue is an autoimmune disorder. When gluten enters the body, the immune system overreacts and attacks the small intestine, which hinders the absorption of nutrients.

Sprue is fairly commonly associated with diabetes. There also appears to be an association between sprue and thyroid problems and some arthritis conditions, Kestell said.

And untreated celiac disease is linked to a tumor of the immune system, although this is a very rare complication, Kestell said.

Though there is little scientific evidence to support their claims, Tschirley said some people in the celiac community believe there’s a connection to autism, attention deficit hyperactivity disorder and even Down syndrome. She said she thinks any child who has these conditions should be checked for celiac disease because there are many anecdotal reports of patients showing improvement when they go on a gluten-free diet.

Kestell, however, casts doubt on the connection between these disorders and sprue. “(When there are) things we can’t explain, people are looking to hang their hat on any explanation.”

Now 76, Tschirley was diagnosed eight years ago, but thinks she probably always suffered from gluten intolerance. “My stomach hurt all my life. I thought everyone’s did.”

Having spent 18 years working as a respiratory therapist, Tschirley decided in 1997 that starting the Inland Northwest Celiac Explorers support group would be one way to help others navigate life without gluten.

“Most doctors are completely oblivious to the dark hole you go into when they say go on a wheat-free diet,” Tschirley said.

Indeed, gluten is everywhere, from the obvious breads and pastas to more unsuspecting products, including some vinegars, ketchups and instant coffees as well as many gravies and sauces. Even some toothpastes and vitamin supplements may contain gluten.

Celiacs must learn to read labels for ingredients that may be forms or derivatives of gluten, including malt and malt extracts, various starches and even unspecified “natural flavoring.”

Celiacs also must be careful about cross contamination. Some gluten-free products may be processed on equipment that also make wheat based products.

Tschirley and others hope that new labeling laws that go into effect next year will help celiacs find gluten-free products.

“What’s most important for people who are newly diagnosed, I think, is learning what sources of information are credible,” said Geddes.

One of their first stops for information should be with Tschirley.

While doctors typically refer newly diagnosed celiacs to dietitians for help in redefining their diets, Kestell said he refers them to Tschirley. “We’re very fortunate to have her around to educate others.”

As Fuller put it, “Melba knows all.”

More than 200 celiacs have contacted her, Tschirley said. And she’s found that meeting with them one-on-one is most effective. “People have so many different questions,” she said.

She’ll tell them about other celiac support groups across the country, including some that maintain extensive lists of gluten-free products. She also directs them to reliable Web sites, online forums and even cookbooks.

For now, the Inland Northwest Celiac Explorers support group meets only twice a year. The next meeting is in October. Organizing more frequent meetings, Tschirley said, is more work than she can take on right now.

But there’s one thing she’s not willing to let slide: getting the word out about early diagnosis.

“My goal is to catch the kids when they’re small,” she said.

To that end, Kestell said that doctors need to remember this: “You won’t make the diagnosis unless you think of it.”