Nov. 10--Marie Kawaguchi spent much of the first four decades of her life going from doctor to doctor, trying to find relief for conditions that included persistent fatigue and weakness, digestive problems, muscle aches and what she calls "brain fog."
"I had a couple doctors tell me I had irritable bowel syndrome, and I should get over it," said Kawaguchi, 54 and a West Haven resident.
So about a decade ago, when her doctor suggested one more test, Kawaguchi resisted.
"I didn't return to his office for a year, I was that fed up with the medical community," she said. "I did not want to take one more test, then hear nothing was wrong, it was all in my head."
When she did return, that one more test gave Kawaguchi her answer. She had celiac disease, a serious intolerance to gluten, which is a mix of proteins found mainly in wheat, barley and rye. Breads, pastas, and soups and sauces that use the grains as thickening agents were causing her digestive system to become less effective, causing a host of health-threatening problems.
The Celiac Disease Foundation estimates that 1-in-133 people have the disease, which in extreme cases can lead to death. The treatment is a modified diet, free of products containing gluten.
"You learn to read every label," Kawaguchi said. "You become much more aware of ingredients."
Celiac support
Jenny Stanger of Layton became a label reader as well. Her husband and daughter were diagnosed with celiac disease, which tends to run in families. This fall, Stanger opened Gluten Free Foods, a Layton shop that caters to gluten-intolerant members of the community.
"Shopping is very frustrating and time-consuming for people who cannot have gluten," Stanger said. "They have to read the label on every single product, even if they have bought it before, because companies change their formulas.
"It was a frustration for me to have to shop multiple stores for products we liked. And gluten-free food can be expensive, around $5 for a loaf of bread, and if people buy a loaf that tastes bad, it's hard to spend that money again."
Stanger decided her store would feature products she knew, trusted, had researched and tastetested. She says early sales at the store are promising, and word is spreading in the tightly knit community of celiac disease sufferers.
The Northern Utah GIG (Gluten Intolerance Group) meets for a free cooking demonstration at 7 p.m. on the fourth Tuesday of each month, upstairs at Macey's Market, 325 E. 36th Street, South Ogden. Usually, about 40 people show up, a Macey's spokesman said. At the next meeting, Nov. 24, the group will learn to make gluten-free carrot cake and angel food cake. For reservations, call Macey's at (801) 392-1842.
In recent years, Macey's and most other Utah supermarkets have begun offering an expanded selection of certified gluten-free products, often grouped into a single section. Many Utah restaurants also offer gluten-free selections and sometimes group the offerings onto a separate menu, available on request.
The disease
Jennifer Turley, Weber State University associate professor of nutrition and online nutrition program director, said celiac disease is the best-known, most thoroughly researched form of gluten intolerance. It's an autoimmune disease that can cause intestinal villi -- the tiny, fingerlike projections from the intestinal walls -- to atrophy or flatten. Without functioning villi, the body's absorption of nutrients from food is incomplete, and diarrhea is common. Turley said that people with celiac disease may be malnourished and can have mineral deficiencies that lead to weak bones or anemia, among other ailments. A blistering rash are a common symptom of the skin version of the disease, called Dermatitis Herpetiformis.
"There's been a change in the medical community in the last 10 or 20 years, in how they recognize and diagnose the disease," Turley said. "The diagnosis used to come when someone was very thin and about ready to die. Now, the medical community is more tuned in to symptoms like iron deficiency anemia and gastric distress, and will order diagnostic tests. They don't wait until the disease is so advanced."
Kawaguchi married into a family of Japanese descent and was shocked to learn her family's favorite condiment contained gluten.
"People think of soy sauce as being made from soy, but wheat is the second ingredient," she said. "We use soy sauce every day, at every meal except breakfast. When I discovered soy sauce was wheat-based, it put me over the edge until I discovered a gluten-free soy sauce."
Leslie Rossi, of Farmington, said she likes to shop at Gluten Free Foods because all the homework is done for her.
"Jenny's store is valuable to me because of the trust factor," said Rossi, who said her celiac disease was triggered by trauma to her body, a 1999 caesarian section. Her doctor initially told her that her fatigue and other symptoms were due to new motherhood.
"Other stores stock a few items and don't care if you trust them. Jenny has celiac in her family, so she understands the damage gluten, even a small amount from cross-contamination during manufacturing, can do. It's just nice to go to one store instead of four, and to find products you didn't even know were available, and to pay prices that are competitive."
Food problems
Cross-contamination can be a problem when manufacturers produce gluten-free and gluten-laden products at the same plant. Oatmeal, for example, contains no gluten, but can be contaminated when produced at a mill that also processes wheat flour, said Joan Thompson, WSU associate nutrition professor and program founder.
"Just one milligram of gluten is enough to clobber your intestinal system and cause an immune response that flattens your villi right out," she said.
Rossi said sometimes she finds gluten-free substitutes for favorite foods, and other times she simply talks herself out of eating a former favorite.
"Once I was diagnosed, I decided I was going to have a positive outlook and not going to allow the situation to control me," she said. "Celiac disease is not like having cancer or losing your sight, or amputation. I just had to alter my perception of food, and eat correctly. I reexamined my life, and found it was not necessary to eat bread. There are lots of cultures throughout history and the world that were not raised eating spaghetti. What makes me feel I have to eat spaghetti and bread to be normal?"
Turley believes the most healthful diet, for celiac patients or for anyone else, is one made of whole foods.
"You can eat a baked potato or squash, baked beans or other legumes, and get away from processed foods," she said. "You can eat rice or a whole piece of fruit, or a whole piece of meat or fish. If you go away from processed food, and just avoid wheat, barley and rye, you're going to be eating gluten-free, and you'll be healthier, and you're going to be saving the world. Fast food and processed food are not sustainable.
"You don't have to spend an arm and a leg on a glutenfree cookie or cracker. You can learn to cook millet, or have jicama, or investigate other ethnic foods. It opens a world of a lot of interesting, exciting foods that don't have to come from a package."
Rossi said her life has improved significantly since she adopted a diet free of gluten.
"I feel better," she said. "It took several months for me to heal, but some people do feel better immediately after changing their diet. It's different for every person. I have more energy and my lab work is normal again. I feel more healthy.
"People get the diagnosis and they freak out. They don't know what to do. Well, there's plenty you can do."
Kawaguchi said decades of unknowingly eating foods that caused a toxic response to her system did cause some permanent damage.
"I have osteoporosis, probably from not absorbing enough calcium, and I have degenerative arthritis, but life is tremendously better now," she said. "I have more interest in things, and have been told my personality has changed for the better. I am happier and I seem to handle stress better, and have a better attitude. I know what to order at a restaurant so I don't have to run home to get to the bathroom. I can go out and do more things. Life is just a lot better."
For more information on celiac disease, visit the Celiac Disease Foundation at www.celiac.org. For information on Utah groups, visit www.gfutah.org.
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