May 16, 2003 - 23:35:34 CDT
Mary Ann Foss holds many records.The Bismarck resident holds the record at her former dentist's office for the most cavities in one visit with 16, and that was after she was there two years before. She captured the record for the number of trots down the hall in a day at work to go to the bathroom, with a daily average of eight times.
"It's a long way to the bathroom where I work," said Foss as she laughed.
Distance to the bathroom used to be a huge problem for the 57-year-old who was diagnosed with celiac disease two years ago. Being undiagnosed, Foss' body couldn't handle food because the lining of her small intestine was completely gone, so any food would go right through her.
"I am convinced I had it all of my life," Foss said about the disease. "I hit 50 and my body said, 'I can't tolerate this anymore.' Everything just went to pot."
Gluten, a component found in wheat, rye, barley and oats, was the culprit. When a celiac eats anything with gluten, the body treats it like poison and creates antibodies in the small intestine. The gluten ultimately causes hair-like structures in the small intestine called villi -- which absorb nutrients -- to shrink or be destroyed.
The prevalence of the disease has grown recently because of better testing methods that are now available to diagnose it. It is estimated at least 1 in every 150 people in the United States suffers from the disease and, Medcenter One gastroenterologist Dr. Yaser Rayyen said, the numbers in this area are especially high.
"It is much more prevalent here than it was in New York," said Rayyen, who used to work in New York. "Most of the population here is from Northern European countries where the disease is common."
The effects the disease has on a person's body vary depending on the individual. For Foss it was constant diarrhea, clusters of red boils under her arms, headaches, aching bones and dental enamel defects. She also had bloating, flatulence and stomach cramps that would leave her doubled over in pain.
In addition to the symptoms Foss suffered, undiagnosed celiacs can have neurological effects, such as depression and loss of balance and memory, along with breathing problems. If it left untreated or undiagnosed, it increases a person's risk for cancers of the mouth, esophagus, breasts and small intestine, said Mid Dakota gastroenterologist Dr. Mustafa Kathawala. It also can cause diabetes, arthritis and thyroid and liver disease.
Foss was diagnosed after a blood test showed she had the disease and a biopsy of her small intestine confirmed it.
"I said two things to the doctor when he told me," Foss said. "I said, 'Does this include chocolate?' and 'This is unfair to do to someone who hates to cook.'"
A complete lifestyle change has to be made by celiacs when they are diagnosed because the only way to treat the genetic disease is by adhering to a strict gluten-free diet, which means no mainstream bread, doughnuts, cereals or sweets like cookies. And eating out?
"It's very limited what you can eat when you go out," Foss said.
Because gluten is hidden in many products in forms like modified food starch, natural flavoring or caramel coloring, it is difficult for unknowing, newly diagnosed celiacs to follow a strict gluten-free diet.
"The way you cook and shop is completely different," Foss said. "You have to read the label every time because ingredients can change. I would be in the store for three hours getting groceries."
Foss educated herself through Web sites dedicated to the disease about what foods she could actually eat and what ingredients contained gluten.
There are alternatives available for celiacs. Just about everything with gluten in it can be reproduced with recipes containing rice, potato and tapioca flours. Natural food stores and grocery stores carry products specifically labeled as gluten-free, but they come with a hefty price tag.
A loaf of gluten-free bread that is about half the size of a regular loaf of store-bought bread costs between $4 and $6, while four bagels cost $5. Crackers and cookies run about the same -- half the size of mainstream products and double or triple the price.
The Bismarck-Mandan area has a celiac disease support group called Central North Dakota Celiacs. The group meets once a month to share recipes and educate local restaurants about their diet restrictions. There are more than 30 members, with some coming from as far as Hazen.
The group also helps newly diagnosed celiacs deal with the life changes they face.
For Stacy Johnson, a 30-year-old Bismarck resident with celiac disease, the diagnosis last fall threw her into a grieving process and also caused her to cut herself off from her friends.
"I went into shock for about four days," said Johnson, who works with Foss and was encouraged by Foss to be screened for the disease because of her family history of diabetes and thyroid disease. "I feel like I am going through the stages of grief. Some days I just tell myself it will go away. It's been very lonely. I don't want to be around it or explain it to people."
One stage Johnson has gone through is denial. She still finds herself cheating at times and eating products with gluten, which is easy for her because most of the times, she doesn't have immediate reactions. Foss is the opposite, having a reaction immediately after she eats anything containing gluten.
"It's hard when I don't have symptoms because it makes me want to cheat," Johnson said. "If I was like Mary Ann (Foss) I wouldn't touch it. I know it is still doing the damage."
(Reach reporter Sheena Dooley at 250-8225 or sheenadooley@ndonline.com.)
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