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Tina Maurer studies cereal labels to find
HEN SHE turned 50, Tina Maurer of North Stafford followed the standard advice of doctors and went to get a colonoscopy.
While she was at the office, the doctor also ordered an endoscopy to check her esophagus and small intestine, because he thought she had been on an acid-reflux medication for too long.
What the doctor found was that the lining of her small intestine was damaged--she had celiac disease.
Celiac is an autoimmune disorder that damages or destroys the lining of the small intestine because the body can't digest gluten, the protein found in grains including wheat.
Without the structures on the lining called villi, the intestine is unable to absorb the necessary vitamins and nutrients from food.
Symptoms of celiac range from diarrhea to extreme malnutrition. Common symptoms are similar to those of indigestion.
The cause is unknown, but it is at least partially genetic.
Maurer said her father suffered symptoms similar to hers, though he was never diagnosed with the disease.
"He was eating Tums and Mylanta all the time," Maurer recalled.
Stressful or traumatic incidents can trigger an onset of the disease in people who are predisposed to it.
Maurer said she doesn't know what brought on her disease, but she does know she's in for a lifetime of very different eating than she's used to.
The only treatment for the disease is to give up all gluten, which is what Maurer did.
Gluten is a protein found in grains such as wheat, barley and rye.
"At first it was very scary," Maurer said. "I went to the grocery store, which normally takes me 20 minutes, and it took me an hour and a half, reading every label to see what was in it."
Celiac is believed to affect about one out of every 133 people, according to the Web site for the University of Maryland Center for Celiac Research. But the disease is grossly under-diagnosed because of its varying symptoms.
Dr. Kenneth Josovitz of Associates in Gastroenterology in Woodbridge, Manassas and Stafford, said that for every patient who is diagnosed with celiac, seven more go undiagnosed.
Many people don't get tested because they don't think they're sick enough, Josovitz said.
"There's a large number of people with some bloating, cramping, excess gas and they're not concerned enough to seek medical attention," Josovitz said.Learning to adjust
Living with celiac disease can require a radical shift in diet and careful inspection of food labels.
Starchy foods such as bread and pasta are obvious sources of gluten. But harmful quantities can be present in things as small as a Communion wafer or cracker crumbs.
There's debate about whether oats are safe for celiacs, but most dietitians recommend avoiding them.
Cathy Peterjohn, a registered dietitian and clinical nutrition/diabetes manager at Mary Washington Hospital in Fredericksburg, said she sees about six celiac patients a year. She tries to reassure them that celiac is a manageable disease, and she aims to provide them with the resources they need to live normal, healthy lives.
"Their attitude toward this is everything, because it is a major lifestyle change," Peterjohn said.
Maurer has been learning to read labels since she was diagnosed in March. For those who have lived with celiac longer, the hunt for gluten-free foods used to be even more difficult.
New federal labeling laws that took effect Jan. 1 require food allergens, including wheat, to be clearly identified on product labels.
Shelly Thompson of Spotsylvania County, who has celiac, says the law makes it easier to find gluten-free foods.
Thompson started a gluten-free support group in the area about four years ago.
"It's one of those diseases where if you know other people who have it, it really lightens your load," Thompson said.Finding support
The group Thompson formed meets at 9 a.m. on the third Saturday of every month at Salem Church Library in Spotsylvania.
At the meetings, group members bring gluten-free snacks and share recipes and news articles they have found in the past month.
The experiences of the group's members illustrate the many ways celiac can affect people.
Jodi Sullivan, 43, of Spotsylvania was sick for seven years before diagnosing herself with celiac disease and getting her doctor to confirm it through tests. Originally, she was diagnosed with chronic intestinal pseudo-obstruction.
Her son was tested for leukemia and clotting disorders, among other things, because of his frequent bloody noses and inability to clot properly. Sullivan later learned that those were symptoms of celiac, too. Jake Sullivan, 14, lives with both celiac and juvenile diabetes. It is common for people with one autoimmune disorder to develop another, as Jake did.
Getting a diagnosis was especially tough for Thompson, the support group founder, because unlike the other members of the group, she doesn't feel any different when she stops eating gluten.
Thompson, 44, has a wealth of health problems, some of which she said improved when she went on the gluten-free diet. But although the diet helps her overall, she doesn't react to small, individual doses of gluten the way others in the group do.
At a recent meeting of the group, all of the women said it was difficult to find a doctor who really understands the disease.
Mary Tooker, 41, of southern Stafford, who was joining the group for the first time, said she is sure she has celiac, but she hasn't bothered to get tested.
Tooker is still working out the kinks in her gluten-free diet, as evidenced by the outbreak of dermatitis herpetiformis on her shoulder. The itchy red rash appears on some people with celiac as a result of eating gluten.
Josovitz said confirming the diagnosis medically is important, because people with celiac are at a higher risk for gastrointestinal malignancies.
A blood test is available to screen for the disease, and a biopsy is used to confirm the result of a positive blood test. Once diagnosed, people with the disease should see their gastroenterologist once a year, Josovitz said.Eating gluten-free
A growing number of stores and restaurants are able to cater to celiac sufferers' special dietary needs.
Cynthia Kupper, executive director of the Gluten Intolerance Group, has worked with several restaurant chains to develop gluten-free menus. Among them are Outback Steakhouse, Carrabba's Italian Grill and Bonefish Grill.
"It was a huge success for them to do this," Kupper said. "It gave people with celiac disease an identifiable place where they could eat out and where the menus were consistent wherever they went."
Kupper said she now is taking over management of a program that helps individual restaurants adapt their menus and cooking practices to offer gluten-free items.
"Dining out in a restaurant is one of the scariest things for them," Kupper said of people who can't have gluten. "So knowing that restaurants care and knowing that they're willing to work with them is very important to them."
Grocery stores also have picked up on the growing market for gluten-free foods. Ukrop's has a gluten-free section, and Whole Foods Market has a bakery in North Carolina that supplies gluten-free products to Whole Foods stores throughout the country.
The women in the gluten-free group, however, still say they have to order some things from abroad if they want them to taste normal, such as gluten-free pasta from Italy. They also must be especially careful not to take medicines, such as aspirin, that contain gluten.
Peterjohn and Kupper both teach people about gluten finding its way into foods because of cross-contamination. An example of cross-contamination is using the same fryer to make gluten-free french fries and a breaded blooming onion.
Maurer, the North Stafford woman, is still adjusting to life without bread and pizza. But she has a positive outlook about her disease.
"It is a major life change, but if you have the right attitude, you can get over it," she said.
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|Facts about celiac disease
What is it?
Celiac causes the body to attack the small intestine, damaging it and causing various illnesses.What are the symptoms?
The symptoms of celiac are different for everyone but include abdominal pain, diarrhea, chronic fatigue, weight loss, malnutrition, tooth enamel defects, osteoporosis, anemia and--in children--irritability and failure to grow properly.What causes it?
The cause of celiac has not been determined, but research shows it is at least partially genetic.Who has it?
Celiac affects both children and adults. It is most common in people of European descent.Is there a cure?
There is no cure for celiac.