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Old Sun, Nov-23-03, 16:26
NickFender NickFender is offline
Senior Member
Posts: 1,042
 
Plan: atkins
Stats: 283/250.5/190 Male 6' 1"
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Progress: 35%
Location: Pacific NW
Default article about celiac disease

From the Seattle Times Pacific NW Magazine 11-24-03

WRITTEN BY WILLIAM DIETRICH
~
WE DON'T KNOW exactly what the Pilgrims and their Indian "guests" (who came in such unexpected numbers that they wound up having to bring most of the food) ate at the celebratory 1621 three-day feast that has been mythologized into Thanksgiving.

But we do know it bore only a faint resemblance to what you'll gobble on Thursday.

There was venison and fowl for sure, because accounts of the meal specifically mention them. Probably turkey, though we can't be positive. Most likely they ate Native American foods such as dried corn, squash, beans and berries.

But almost certainly there was no bread, because the English attempts at grain crops had failed in the rocky Massachusetts soil. No milk, because there were no cows. No eggs, because there were no chickens. No sweetened anything, because there was no sugar.
~
Does that sound like crabby food paranoia? Hey, not me, a guy who generally eats what's put in front of him. Accordingly, I was skeptical a year ago when my wife came home from the doctor and announced that wheat was killing her, and she couldn't eat it.

Ever.

What? Genetically intolerant to the staff of life? The stuff of birthday cakes, communion wafers, hamburger buns, KFC breading and Krispy Kreme donuts — to say nothing of sage dressing and pumpkin pie? It was like announcing that oxygen was toxic, or water poisonous. I'd never heard of her malady, celiac disease. It sounded crazy.

Yet within two days of cutting wheat, rye and barley from her diet, her intestinal symptoms began to abate. As months went by, the alarming weight loss, severe headaches and a host of other health problems receded.
~
After years of illness and debilitating symptoms, Bette Hagman finally learned that she had gluten intolerance, or celiac disease. Since then, she has pioneered the effort to find alternatives to wheat and other gluten-laden foods. Along the way, she discovered the joy of food and authored five cookbooks. No drugs were required for this miracle cure. Simply no gluten, the protein that gives dough its rubbery resiliency and bread its fluffy bounce. Left unchecked, gluten in the genetically unlucky can starve the body of needed nutrients and flood organs with unwanted toxins.

That was the first shocker. The second was a University of Maryland study, published last fall shortly after my wife's diagnosis, saying random blood testing showed that, far from being a rare problem, celiac disease is present in one of every 133 people, or 2.2 million Americans.

Transfer that result to Washington and it suggests that roughly 45,000 people in our state have celiac disease, enough folks to fill Safeco Field.

Odder still, 97 percent don't know they have it. Many don't feel good, but they don't suspect gluten grains are the cause. And they may have famous company. Dr. Peter H.R. Green, a celiac researcher at Columbia University, suggested in an essay last year that the chronic health problems of President John F. Kennedy closely match the symptoms of celiac disease, which was apparently unknown to Kennedy's doctors.

There's a good chance your own family doctor is unfamiliar with it, and might misdiagnose it.

Yet not only does my wife's problem appear all too common, but America's food bounty seems to be affecting many more of us. Obesity is the most common dilemma, of course, affecting three out of five Americans. But there are also an estimated 17 million diabetics, a third of whom don't know they have the disease but need to change their diet. The number of lactose intolerant is estimated at 30 to 50 million. Those with serious allergies to one or more foods known to cause problems number 5 to 7 million, health experts estimate. Autoimmune diseases such as multiple sclerosis, Alzheimer's and rheumatoid arthritis may also have roots in diet as well as genes.
~
At Kaili's Kitchen in Edmonds, customers enjoy everything from French toast to fish and chips from an entirely gluten-free menu. The fare satisfies even people who don't know the restaurant's unique mission of serving people with celiac disease. Harold Bennett and his wife, Sherrell, who is celiac, make the long trip from their home in Sammamish to be able to eat out free of worry. Those affected live in a world of inadequate food labeling, indifferent grocery stores and uninformed restaurant owners.

The subject is complex and confusing. Celiac disease, for example, is not an allergy but a genetic autoimmune disease in which wheat's gluten causes antibodies to attack the body they are supposed to protect. A wheat allergy, which can cause sneezing and skin problems, is different. Like other food allergies, the antibodies attack ingested food, in the process releasing chemicals such as histamines that makes the sufferer feel sick. Lactose intolerance is lack of an enzyme needed to digest milk. And so on.

Science is still figuring out the distinctions and interconnections between these maladies. This lack of certainty is not surprising: The word allergy dates back to only 1906. Celiac research is only half a century old.

Still, these statistics are disturbing. Why, after a 20th century that saw the average American lifespan lengthen by more than 25 years, does there seem to be a precipitous rise in allergies such as asthma (which has doubled in Great Britain in just 20 years) or autoimmune diseases like celiac? Researchers recently estimated one of three Americans born today will become diabetic, and 14 percent of American households report at least one member has a food allergy. And 170 foods have been identified as allergens to some people, though "The Big Eight" account for 90 percent of all reactions: milk, eggs, peanuts, tree nuts such as walnuts, fish, shellfish, soy and wheat.

Feeling lousy? Maybe it's something you ate.

THE HUMAN BODY has to ingest vast quantities of food fuel and oxygen to power itself. With that eating and breathing comes bacteria, viruses and irritants that have to be destroyed or blocked: good stuff in, bad stuff out. Increasingly, however, our antibodies seem to have trouble telling good from bad.

The logic of the problem is simple enough. For a million years or more, humans ate meat, fruit and simple vegetables. Then, after the end of the last Ice Age, we learned to cultivate and harvest the seeds of various grasses, including wheat, rye, barley, corn and rice. This made civilization possible, but it also changed our diet. These grains were bred beyond recognition from their original ancestors, and wheat in particular has become more gluten-heavy because that makes lighter, puffier bread. At the same time, our consumption of sugar, salt and spices has soared.
~
Karen Robertson was stunned when her two children were diagnosed with celiac disease. And though it was difficult at first, she found a way to feed the whole family things that had seemed out of reach, including pizza. Sam, 8, and Carmen, 12, help Karen put together pizza with gluten-free dough. People with celiac disease carry a gene that mistakenly identifies gluten proteins as bacteria-like invaders. But why has such a malady — and others like it, from peanut allergies to autism — gone from rarity to far more commonplace?

Theories are proliferating. One is that we find these diseases because we know about them: In the past, people suffered in ignorance. The ancient Greeks knew that diabetics had some kind of problem with sugar because ants were attracted to their sweet urine, but diabetes was so poorly understood that it was being treated with blister packs and opium in the 19th century and near-starvation early in the 20th. Insulin was first manufactured in 1921, but it took decades to make diabetic treatment routine.

Another idea is that those afflicted often died in childhood in the past but are now surviving to be diagnosed and treated.

A third theory is that our food and environment have become so clean that our immune system doesn't have enough to do. As a result, our underemployed antibodies are attacking our cells instead of microbes.

A fourth theory is that we're poisoning ourselves, just as the ancient Romans are suspected of poisoning themselves with lead dinnerware and pipes. Chemicals and highly processed foods are combining to bombard us with unnatural molecules that are triggering these diseases.

A fifth theory is that because wheat has been bred to carry so much gluten, and because the grain is used as an additive in so many products, average exposure to gluten is far higher than in the past.

And in this country, we also eat too much. The dose makes the poison.

IF SEATTLE IS a good place to have a heart attack, because of Medic One, it is also a good place to have celiac disease. It is the headquarters of the nation's first support organization, the Gluten Intolerance Group, now 30 years old. It is home to the nation's biggest gluten-free bakery. It recently acquired what may be the nation's only entirely gluten-free restaurant. Vashon Island's Camp Sealth has an annual session for children with celiac disease. And Ballard has its own celiac cookbook pioneer, 81-year-old Bette Hagman.

Hagman had been sick all her life, suffering from anemia and bone loss, constantly having to run to the bathroom — examples of multiple symptoms that can affect the body, hair and brain.

She'd seen a troop of doctors, so baffled that they directed her to psychiatrists. She was so ill her daughter had to stay home from school some days to take care of her. She couldn't join her business executive husband at company functions.

But she wasn't nuts. Finally, in 1974, a cancer specialist handed her a purple-colored mimeographed sheet about what was believed to be an extremely rare condition, a medical-textbook illness she'd never heard of: celiac disease, or celiac sprue.

While the first description of celiac disease was written in the second century A.D., the problem wasn't clinically described until 1888 by Dr. Samuel Gee. Even then, no one knew what caused the wasting disease until the Nazis imposed wheat rationing on Holland in World War II. Dutch Dr. Wim Dicke noticed that children with dietary upsets got better when they had to rely on wheat substitutes and worse when the war ended and wheat returned. By 1952 researchers had identified the protein gluten as the problem, but American specialists were taught it affected at most just one in 4,000 people.

When Hagman was diagnosed, it was a life sentence — a grim exile from American cooking. Not only were bread, pasta and cereal verboten, but gluten was (and is) present in many, if not most, processed foods. Wheat is cheap filler and texture. Welcome to a life of rice crackers and broccoli.

Ironically, Bette had never liked to eat because it made her sick. "When I recovered enough to find out food tastes good, I got interested in cooking," she said. If she couldn't buy wheat bread, she'd invent her own substitutes. A Seattle bakery called Ener-G Foods was making goods for dialysis patients, and Hagman purchased some of their gluten-free flours and started to experiment.

Sam Wylde, owner of Ener-G, recalls that celiac patients had begun buying bread first developed for kidney-dialysis patients, who have trouble digesting protein. In 1975, the company started by his father obtained equipment to begin developing other breads based on alternative flours, plus a packaging method to give a year's shelf life to the products so they could be shipped anywhere in the world. While Ener-G definitely gets mixed reviews for its recipes, its 80,000 loaves a week make it the biggest gluten-free bakery in the Western Hemisphere.

"Most celiacs don't know they have it," said Jerry Colburn, Ener-G's marketing manager. "They think they have an ongoing cold or flu or allergy." But with recent publicity and increased diagnosis, he said, it's been hard for the bakery to keep up with demand.

About the same time Bette Hagman was diagnosed, a University of Washington scientist named Elaine Hartsook assembled Seattle's known celiacs and founded the Gluten Intolerance Group, now headquartered in Burien. They began trading recipes for bread substitutes, using flours made from beans, potatoes, rice, soy, nuts, buckwheat (which is not a grain but a relative of rhubarb), arrowroot, the tapioca that comes from it, amaranth, quinoa and taro. Celiacs have even rediscovered flour from a native American bunchgrass, dubbed montina.

"I'm more of a food scientist than a cook," Hagman says modestly. But by 1981 she decided the celiac world needed a cookbook. She already was an English major and writing teacher who had penned one mystery. Nine years later the Betty Crocker of gluten intolerance produced "The Gluten-Free Gourmet," the first of five books (a sixth is on the way) that, combined, have sold a quarter-million copies and gotten her on nine PBS specials.

Now she is being joined by a newer generation more interested in gourmet cooking. Queen Anne Hill's Karen Robertson was shocked when her two toddlers were diagnosed with celiac disease. "It can be so depressing to be told you can't eat all of these things," she recalls. "We were completely stunned as a family — it was, what do we do now?" So Robertson, who runs a small advertising agency, invited celebrity chefs to contribute recipes for her "Cooking Gluten-Free," a publishing award-winner. Her children's symptoms disappeared and even her husband, though not diagnosed, feels better on a gluten-free diet.

Such a transition is difficult, however. The flours are more expensive, and most convenience foods are off-limits, meaning more time has to be spent cooking. It becomes more awkward to entertain, to eat at someone else's house, or dine out. And while Thai and Vietnamese food can be safe — if the chef doesn't use wheat-additive sauces like some soy sauce — the Thanksgiving cornucopia of America is suddenly truncated.

My wife, who is a great cook, essentially had to start over. Wheat-substitute recipes are so varied in taste that finding what you like is a matter of trial and error. Alternate flours don't rise like wheat. Temperatures are different. Baking pans are different. Rice and corn grow in importance. Pasta substitutes exist, but each brand is different.

Trying to address the gap, some restaurant chains are offering gluten-free menus. And in Edmonds, Kaili McIntyre and Arlene Palumbo just opened the modest Kaili's Kitchen in the Firdale Village shopping center. They're serving exclusively gluten-free food, including everything from French toast and muffins to hamburgers and fish and chips, chocolate cake and bagels. Just as Hagman and Robertson decided to write their own cookbooks, McIntyre said she decided to develop her own recipes and open her own restaurant — a positive place "where food is filled with possibilities." Some customers, wandering in from the parking lot, eat happily without knowing the fare is deliberately gluten free.

On a national scale, recent media attention to a variety of food-related illnesses — including the epidemic of obesity — may broaden or even accelerate the quest for causes and solutions. Anyone who suspects a food-based problem should start by reading. If you think you could have celiac disease, ask your doctor for a screening blood test. If that is positive, a specialist may want to do an intestinal biopsy. Finally, you may want to try a gluten-free diet to see if it helps — but don't start one before diagnosis.

You can play a role as a consumer, too. From 1998 to 2001, for example, people seeking to avoid lactose caused the sale of soy milk products to nearly triple in dollar terms. Shopping smartly and creating demand for alternatives might push the food industry in new directions.

Kupper and others think the single simplest thing that could be done to help in the short run would be better food labeling. Sen. Edward Kennedy of Massachusetts is one sponsor of a bill requiring manufacturers to identify the "big eight" allergens, but it proposes the less-useful "wheat" instead of the more inclusive "gluten." To date, lobbyists from the food industry have blocked Democratic sponsors.

Difficult as living with food intolerances is, not dealing with them is far worse. Cynthia Kupper, director of the Gluten Intolerance Group, lost 40 percent of her body weight over two years before finding the answer — even though she worked in a hospital. "I think I would have died if I hadn't finally been diagnosed," she said.

Besides, just as people learn to live without tobacco, alcohol or caffeine, life goes on without milk or sugar or gluten. Most find a suite of recipes that work, and the Thanksgiving my wife will host Thursday would fool even a Pilgrim.

Those of us without problems can be thankful not only that we have such bounty but that we can eat it. And all of us can be grateful that medical science is finally starting to understand just how varied we are in our reaction to a Thanksgiving table's worth of foods.

William Dietrich is a Pacific Northwest magazine staff writer.
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