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The girl who couldn't eat wheat.

I knew Margie Leland as a youngster because she swam, or tried to swim, competitively on our club's swim team. Her brothers and sisters were all winners. Margie had six brothers and sisters at the club--all handsome and beautiful, well-developed youngersters. They came in with firsts in the backstroke, breaststroke, freestyle and butterfly in every age group. Margie was about in the middle. I didn't know Margie' parents well at the time, but I used to wonder why, in this remarkably athletic family, little Margie was so underdeveloped. She had a protruding abdomen, dark circles under her eyes and no developing bosom like the other girls her age. She always came to team workouts wearing her father's loose-fitting, white T-shirts over her revealing team tank suit. When she took off the shirt, it was easy to see why she was trying to hide her little profile. Her ribs showed, her shoulders stuck out and her pelvic bones protruded. As she lined up to compete, her scrawny little legs were pathetic. No matter how hard she worked she could never come in for a ribbon. More often she was last. Sometimes she would stop, halfway down the racing lane, which I later learned was because of the riling pains in her adbomen.

A few years later, I happened to mention Dr. Philip Christiansen, a professor of gastroenterology in a course I was studying, to Margie's mother, Hazel Leland. "I could kiss Dr. Christiansen!" she cried. Coming from reserved and proper Hazel Leland, this outburst needed explaining. And what a happy-ending explanation it was. I felt good all over when she finished the "Margie story," as I hope you will when you read it.

Margie had been an active, bright baby, but through the ensuing years--until she was 13--she did not grow normally. She tired easily, and in spite of regular visits to the pediatrician, no one could identify her problem. Friends and relatives all made suggestions about what might be causing little Margie's failure to thrive. Margie's mother felt that it must be related to her diet. So she tried withholding one food after another. "I kept trying diets at home," she explained. "You know how you eliminate all the things you think are--too rich --and then you eliminate the roughage. Chocolate or nuts and that sort of thing were never big at our house, but we did have dessert at the end of dinner--angel food cake or something. I just kept experimenting, hoping to find what was irritating her."

Through the years, the mother shared her child's suffering and her day-to-day struggle. Among her problems were sores on her hands and feet. She took extra white socks to kindergarten because her feet sometimes bled. She wore white gloves to school to keep the chalk and crayons and the paste from irritating her hands.

"Through her childhood ordeal, Margie was such a good little student," Hazel said. She was the only child who answered every question in the World Book, with its 1,100 questions. Not having the extra energy for sports, she loved to sit and do any kind of book work.

Margie didn't have a normal relationship with her brothers and sisters because she wasn't able to do her share of the family chores. She would have to sit and study or read a book while they did the household work. "Queenie," they would derisively call her. And it wasn't until they learned of the cause of her lethargy years later that the relationship changed and she was understood and accepted by the robust members of the clain.

Margie would get terrible stomach pains and explosive bowel movements. She would not tell her mother about these pains and begged her sister, "Please don't tell or I won't get to go to parties."

Ironically, Margie's pediatrician was concerned about her getting too much attention because she was different. He really didn't know what to do about her.

Then one day Margie brought the heartbreaking question to her mother: "Mother, what's wrong with me?" The little girl wanted so much to be like everyone else.

Margie's grandmother had told her daughter: "Hazel, we're going to lose Margie if you don't do something about her." Hazel became even more concerned for her child's health. It was at a time when her husband had received a major opportunity to advance in his career, which would require moving the large family out of the Midwest all the way to Vermont. It was a family decision to be pondered, but Hazel found herself far more concerned about Margie's health than where her husband's work would take them. The more was not made.

At the state library Hazel pored over the medical books until finally she turned up pictures of children with appearances similar to her child's. She took the pictures to the child's doctor and suggested, "Could this be the trouble with my little Margie? These children in the book look just like her." He looked at the pictures and said. "Oh, she could not have lived past three years if she had had that."

Both Margie and her mother had noticed a peculiarity about Margie's bowel movements. They looked like custard, always had a strong odor and would float in a way that would take several flushes to get them out of the toilet. This had to be a key to the mystery of why Margie could eat a good diet and appear to be starving.

In desperation, Hazel then called a friend, Dr. Glenn Irwin, the dean of the state medical school at the time. "Glenn, Im am so afraid we're going to lose Margie." She told him all about Margie's problem.

Dr. Irwin listened patiently and then said, "Hazel, we have a new man, Dr. Philip Christiansen, who has joined the faculty recently and has done research on that kind of problem."

Arrangements were soon made for Dr. Christainsen to see Margie. He examined her and asked many questions about her health, her diet, her activities. Tests were taken, including one that Dr. Christiansen helped develop for the diagnosis of intestinal ailments. Then a biopsy of the lining of Margie's small intestine with a newly developed tube was done. For this Margie had to swallow a rather large capsule attached to a long, rubber tube. When the tube had passed into her small bowel, a syringe on the free and of the tube triggered a tiny, spring-loaded knife that cut and captured a small portion of the intestinal lining.

Subsequent examination of this tiny tissue fragment gave Dr. Christiansen a firmer diagnosis. Margie was a victim of celiac sprue disease. The proof would be how she responded to a special diet. He explained that gluten, the protein found in wheat (and to a lesser extent in barley, oats and rye) was damaging Margie's bowel lining so that it could not absorb the nutrients from her food. She had been absorbing only a fraction of what she ate. She was not getting her vitamins and minerals or proteins. The unabsorbed fat was causing her stools to smell and of course to remain on the surface of the stool water even during flushing.

It was the early '60s and word hadn't yet filtered around medical circles about this affliction that caused serious illness in some people, who couldn't eat wheat. Dr. Christiansen told Hazel that the relationship between cereal grains and finally gluten had been established only in the previous ten years or so. A Dutch physician, Dr. Dicke, had reported his observations that during World War II the incidence of celiac sprue was less and that the patients' symptoms were decreased. During this period wheat and rye flour decreased in availability markedly. After the war the pre-war frequency and severity returned. Subsequently, Dr. Dicke and his colleagues established that the gluten portion of the grains was the culprit. Simple tests to suspect the disease were developed, and finally the intestinal-biopsy tubes were developed.

Margie, 13 years old at the time, was started on a diet that required her to avoid wheat and the other offending grains religiously. She was permitted potatoes, corn, rice, meats, fruits and vegetables, but no canned soup, puddings, ice cream or cereals, because they all contained some wheat products.

In one month, a second biopsy showed dramatic healing. In the six months between June and Christmas of that year, little Margie went from 70 pounds to 100 pounds, and she grew 2-1/2 inches. Today Margie is 5'7". She has gorgeous dimples like her father, and she is a big smiler--just a beautiful girl.

"We consider Dr. Christiansen one of Chirst's disciples," Hazel declared.

Margie went with her friends to Guilford College in Greensboro, North Carolina, "Knowing Margie, I think she just had one good time in college because she had her energy, and the boys liked her!" said her mother. "She majored in sociology and minored in history. She then took a job as a secretary to the president of an accounting firm."

Margie, now 30, has two small children and enjoys good health by carefully avoiding foods containing gluten.

I called Margie the other day to get her version of her illness and remarkable recovery.

"I couldn't believe how quickly I felt good after I changed my diet," she said. She finds that she gets her old problems anytime she neglects her doctor's restrictions and eats as much as a bun. "Sometimes I get tired of going to a McDonald's and asking for a hamburger without the bun," she said with a laugh. "But then it's a small price to pay."

In college she thought she would try to drink a beer with her friends and soon found that she was immediately punished.

The gluten in the beer led her quickly back to the ladies' room, and she adhered to the "no-beer" restriction thereafter. If she wanted to drink, vodka made from potatoes wouldn't harm her, but she doesn't find abstaining from alcoholic beverages a problem any longer.

Hazel's sister is now suffering from problems similar to Margie's but to a lesser extent. In her case there is some depression involved. Hazel believes that, in retrospect, her mother also had some inability to absorb gluten, but not to the same degree as Margie.

Celiac sprue is the name given to the condition of severe intolerance to the protein of what, barley, rye and oats. More exactly, it is intolerance to a part of the gluten protein in the grains called gliadin. Specifically how this food substance injures the lining of the bowel is yet unknown. A chronic diarrhea results from the continued consumption of foods containing gluten.

The bowel injury that happens in susceptible individuals results in a failure to digest and absorb the food that has been eaten. Many important nutrients such as vitamins, proteins and fars fail to be absorbed; as a result, malnutrition develops.

It is estimated that in the United States about one person in 3,000 has the fully expressed disease. Estimates from England suggest one person in 8,000 has celiac disease. In Sweden it is believed to afflict one person in 982, and in west Ireland one person in 303 suffers from the problem.

The treatment for celiac sprue is a diet devoid of all foods containing gluten. This covers most bakery products, bread, cakes, cookies and crackers, as well as pancakes, bagels buns, pizza, pastas, canned soups (where wheat and barely are used as thickeners), many processed cheeses, some processed meats, ice cream, puddings, Postum and Ovaltine. Gluten also shows up in whiskey, rye whiskey and beer and causes problems for celiac sprue patients.

This still leaves a long list of foods that may be eaten by celiac victims: All fish, poultry and fresh meats if not breaded for cooking or eaten with gluten-containing gravies or sauces. Potatoes, corn, rice, beans and peas provide carbohydrates that are gluten free, as do dairy products, milk, cottage cheese, yogurt, hard cheeses. (Some ice creams are gluten free while others are not). All plain, fresh and frozen vegetables and fruits may be used as well as canned ones. Fruit preserves, jams and jellies are allowed, as are dried fruits, raisins, dates, figs and nuts. Permissible beverages include coffee, tea, hot chocolate, fruit juice, Kool-aid, milk and buttermilk and alcoholic beverages made from grapes, as well as rum, sake, tequila, corn whiskey and vodka, all gluten free.

The Midwestern Celiac Sprue Association was formed to assist celiac sprue patients adjust to their condition and to spur research regarding celiac sprue. A particularly interesting activity of this group was surveving children of members of the organization and looking for health problems associated with celiac sprue. In 1982 they surveved 113 children. The survey indicated that most of the children had sprue symptoms by age two and the onset of the disease usually corresponded with their eating of solid foods.

The symptoms were listed according to reported frequency:
foul-smelling stools 96%
diarrhea 93%
distended abdomen 85%
failure to gain weight 85%
bloating and gas 72%
failure to grow 69%
irritable, cranky, cross 67%
large, bulky stools 65%
lethargy, apathy, tires easily 65%
crying without apparent cause 59%
frequent stomach aches 52%
irregular sleep pattern 49%
skin disorders, rash, etc. 47%
sudden weight loss 46%
excessive drinking of liquids 37%
too frequent stools 35%
muscle pain or cramps 29%
anemia 27%
inability to relate to others 23%
easy bruising 20%
appeared hyperactive 20%
peculiar taste in foods 20%
complained of headaches 17%
suffered mouth sores 16%
sensitivity to light 9%
easy fracturing of bones 8%

Many children have some of these problems, but in some the diagnosis of sprue is missed because the symptoms are wrongly ascribed to "not eating well" or "going through a stage." The problem of gluten intolerance is probably greater than is commonly recognized. The disease may dimiinish or become symptomless during the mid-teens but usually returns in the 20s and 30s. When the symptoms are transitory or very mild in childhood the diagnosis may not be made until adulthood or even middle age. Many older people suffer abdominal complaints such as frequent loose stools, gas formation and mal-nutrition. Some of these people may have undiagnosed celiac sprue.
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Copyright 1984 Gale, Cengage Learning. All rights reserved.

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Title Annotation:Margie Leland
Author:SerVaas, Cory
Publication:Saturday Evening Post
Date:Dec 1, 1984
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