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For some, gluten can have devastating effects
Wednesday, April 21, 2004
SPECIAL TO THE POST-INTELLIGENCER
The problems began before Megan turned 2.
Her parents, Jennifer and Mark Fisher, saw her become irritable and clingy. She complained of frequent tummy aches. At her 24-month doctor visit, her weight and height percentages had dropped from the 95th to the 50th percentile. As the stomachaches became more severe, she would vomit every time the family sat down for a meal, and diarrhea set in on a family road trip. They also realized that her arms and legs were skinny, but her belly was distended.
The Fishers had just switched to a new pediatrician who correctly suspected that Megan had celiac disease, also called gluten intolerance and celiac sprue, a condition that affects children and adults. It can be triggered at any age and is characterized by an immune reaction to the protein gluten, found in wheat and several other grains.
They quickly removed gluten from her diet and saw a major improvement within four days. "We had this other kid back," says Megan's mom. Her stomach pain subsided and she began to gain weight again. They credit their pediatrician with a quick diagnosis and note that many children and adults suffer for years without being diagnosed.
"Celiac disease is highly undiagnosed. Roughly between 60 and 70 thousand people have been diagnosed in the U.S., but it is projected that 1.5 to 2 million have it," says Alessio Fasano, a gastroenterologist and the director of the Center for Celiac Research at the University of Maryland in Baltimore. Left untreated, celiac disease dramatically increases the risk of certain cancers, osteoporosis, miscarriage, infertility and a host of other ailments, and "it has a mortality rate twice that of the general population. Treated, the mortality rate goes back to normal," Fasano says.
Celiac disease is estimated to affect 1 in 133 Americans, and 1 in 56 Americans exhibiting classic symptoms or suffering from a related autoimmune disorder such as type 1 diabetes or thyroid malfunctions, according to a study published by Fasano and his colleagues in the Journal of the Archives of Internal Medicine in February 2003.
Symptoms for the disease vary greatly in type and intensity, and some people have no symptoms, making this disease difficult to recognize and leading to chameleonlike references. Extreme fatigue, often due to iron-deficient anemia, is one of the most universal symptoms. The word celiac comes from the Greek word "koila" meaning belly, which is where the most common symptoms originate. Abdominal cramping, severe gas, bloating, oily stools, weight loss or weight gain, and joint pain are just a few of the potential signs that gluten is wreaking havoc with your small intestine.
However, "any organ of the body can be affected or targeted. Sometimes it is diarrhea, sometimes constipation, miscarriages, or behavioral changes," Fasano says.
"Intestinal symptoms should raise a red flag. Some people who have been diagnosed with irritable bowel syndrome may have celiac disease," says Dr. Michael Schuffler, a University of Washington professor of medicine and head of the Gastrointestinal Department at Pacific Medical Centers.
Three factors are required in order to contract the disease. First, a person must have a genetic disposition for it. Second, the person must consume gluten, and third, the disease has to be triggered. Common triggers include a viral infection, pregnancy, surgery or a trauma. For some, the disease begins in infancy with frequent projectile vomiting and diarrhea, while it may remain dormant in others until later in life. In fact, "a person can carry the gene but not ever get the disease. However, once it is activated it does not go back into remission," says Cynthia Kupper, a registered and certified dietitian and executive director of the Gluten Intolerance Group, a national non-profit agency based in Seattle.
The disease is characterized by damage to the villi of the small intestine upon consumption of gluten. Villi are small, fingerlike projections lining the small intestine. It is their job to reach out and grab the nutrients in passing food. When a celiac ingests gluten, these fingers are damaged, often shrinking, flattening or disappearing, and nutrients pass through unabsorbed. This can lead to forms of malnutrition in well-fed individuals who may experience weight loss, loose stools and a distended stomach from bloating. It also contributes to a higher incidence of osteoporosis and anemia, despite efforts to take in more of these nutrients. "Anemia, osteoporosis, diabetes, thyroid disease, infertility -- when those are out of control you must question why. Medication may not be being absorbed due to malabsorption," Kupper says.
The good news is that the damage to the villi is not permanent and improvement in health usually begins immediately after adopting a gluten-free diet. No medication is required, but the diet does require a serious lifelong commitment. Specifically, gluten is found in all forms of wheat, including spelt, farina, semolina, triticale and kamut, as well as barley, rye and possibly oats. Gluten also is used as a thickener in a host of food products and some medications. It even is used in the glue on the back of lickable stamps, in some toothpastes and as a powdery coating on some chewing gum.
"It is much harder to avoid gluten now because it is so prevalent," says Seattle-based gluten-free cookbook author Bette Hagman who suffered the effects of undiagnosed celiac disease for 50 years.
Besides painful gastrointestinal symptoms, Hagman had six unnecessary operations, including the removal of her appendix, ovaries and uterus until a doctor looking for cancer recognized celiac disease. When she was diagnosed in 1974, there were few bread products available without gluten. The prospect of eating rice cakes for the rest of her life forced her to learn to cook, and after nine years of experimenting with different flours, she published her first book, The Gluten-free Gourmet. Hagman and her six cookbooks are an inspiration and invaluable resource to thousands who are unable to consume gluten. She recommends finding a support group and wants people to know that it is possible to live and eat well without wheat.
Fasano thinks anyone with symptoms should get tested, including people with anemia or miscarriages without a clear reason, men with osteoporosis, and women diagnosed with osteoporosis before menopause. He adds that all family members of anyone with celiac disease should be screened. The study he conducted found that 1 in 22 first-degree relatives tested positive for celiac disease. Kupper adds, "Anyone with an autoimmune disorder who has other gastrointestinal problems should be screened."
Celiac disease has been linked with a vast array of other seemingly unrelated ailments, including Down syndrome, schizophrenia, epilepsy, lupus, chronic fatigue syndrome and the skin condition dermatitis herpetiformis. Some parents of children with autism also claim they have seen an improvement in behavior with a gluten-free diet.
Screening for the disease first involves a blood test, often called the celiac panel, and if that is positive, a biopsy of the small intestine is necessary to confirm the diagnosis. "The biopsy is much simpler than it used to be. It does require some sedation, but in skilled hands it should not take more than about five minutes," Schuffler says.
Schuffler says the biggest source of confusion is that people want to stop eating gluten immediately. However, he cautions people not to go on a gluten-free diet before testing, "because once you put yourself on a gluten-free diet, the intestine heals itself and the antibody tests that are abnormal become normal."
Schuffler also urges people diagnosed with celiac disease to get a bone density test. "One of the dangers of the disease is it can lead to osteoporosis or osteopoenia," he says, and warns that people must remain on alert for certain cancers for several years after going off gluten.
Jennifer Fisher encourages anyone diagnosed with celiac disease to join the Gluten Intolerance Group because "there is so much support there, and I would not be in the position I am today if I didn't join the support group," and says parents should join a R.O.C.K. group, which stands for Raising Our Celiac Kids. Information for both is available at http://www.gluten.net/ She also recommends parents read Danna Korn's book, "Kids With Celiac Disease: A Family Guide To Raising Happy, Healthy Gluten-free Kids." Fisher adds that http://www.clanthompson.com/ has an amazing database of gluten-free products that can be downloaded on a Palm Pilot or other computer. She types in "gummies" and a list of gluten-free options appears.
Young Megan's ordeal also has been a benefit to others, because the family was able to immediately recognize symptoms in her godmother, whose celiac disease was triggered by the stress of back surgery around the time Megan was diagnosed. They realized that her godmother had been suffering from undiagnosed celiac disease for many years. They emphasize that a trustworthy lab must be used in diagnosing gluten intolerance since a doctor looked at her godmother's 10-year-old biopsy slide and saw that the original pathologist and physician missed the diagnosis. [Note: Megan's godmother was misidentified in the original version of this article.]
Today, almost 4-year-old Megan doesn't miss out on much due to the dedication of her parents, who prepare all of her meals and are vigilant about scrubbing down their house to avoid gluten contact. They have a detailed routine for cleaning counters and keep separate containers, utensils, toaster and KitchenAid mixer for Megan's food. "The littlest crumb will make her throw up all morning," her mom says. The Fishers enjoy cooking and have adapted most family favorites to be gluten-free, including pizza. Jennifer has begun to teach some gluten-free cooking classes for Puget Consumers Co-op.
Megan can even have a Happy Meal from McDonald's with a cheeseburger minus the bun. McDonald's french fries are gluten-free and cooked separately from the chicken nuggets (Note: not all french fries are gluten-free). The Fishers request a new spatula be used in boxing her burger to avoid cross-contamination with the buns. The family also is planning a trip to Disneyland, which has given them a list of safe items for Megan to eat in the park, and the Disneyland Hotel already has gluten-free Mickey Mouse pancakes on the menu for Megan.
This recipe, from Bette Hagman's "The Gluten-free Gourmet Cooks Comfort Foods" (Henry Holt, 336 pages, $27.50) can be a treat for breakfast, lunch or dinner. For increased flavor, add more coffee crystals. For a mocha taste, use the chocolate chips.
Preheat oven to 375 degrees. Grease 12 muffin cups.
In a medium bowl, whisk together flour mix, sugar, baking powder, baking soda, salt and cinnamon.
In a mixing bowl, whisk the butter, eggs and coffee crystals until smooth. Stir in half the flour mixture until just moistened. Add half the buttermilk and half the remaining flour and stir. Finish with the other half of each. Do not beat!
Divide the batter between the muffin cups and bake 22 to 25 minutes.
Nutrients per muffin: calories 290, fat 9 g, cholesterol 57 mg, sodium 396 mg, carbohydrates 47 g, protein 6 g, fiber 1 g.
Note: Four Flour mix is available at PCC and other retailers, or you can make your own by combining: garfava bean flour (2/3 part) 2 cups; sorghum bean flour (1/3 part) 1 cup; tapioca flour (1 part) 3 cups and cornstarch (1 part) 3 cups.
"Making Tracks for Celiacs," Celiac Walk for Awareness and Food Fair; lower Woodland Park, Green Lake, May 15.
Gluten Intolerance Group Kids Camps, Camp Sealth, Vashon Island; three sessions in late July to early August.
Gluten Intolerance Group annual education conference, June 4-6, in Portland.
Dr. Michael Schuffler, a professor of medicine at the University of Washington and head of the gastrointestinal department at Pacific Medical Centers, recommends the following steps if you suspect you have celiac disease.
Important: The biopsies should always be read by a pathologist who has an interest in GI pathology, so as not to misinterpret the findings. Celiac disease could be misdiagnosed if artifacts are present in the tissue that appear similar to celiac disease. It also is possible that partial damage to the villi of the small intestine could be missed.
Jolene Gensheimer is a Bellevue-based free-lance writer. You can reach her at email@example.com.
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