Living with celiac disease: One man's journey

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Living with celiac disease: One man's journey

Gordon Gibbs manages his celiac disease with a gluten-free diet.

When Gordon "Gordy" Gibbs turned 3, his mom made him a layered birthday cake covered in chocolate frosting. Across the top, yellow glaze spelled out "Happy Birthday." Gibbs doesn't remember that cake, even though it was his last — at least the last with typical cake ingredients.

The following year, Gibbs was diagnosed with celiac disease — intolerance to gluten in food that results in intestinal and other disorders. Gluten, a protein, is found in wheat, rye, barley and possibly oats. The diagnosis meant that he would face health consequences, such as damage to his small intestine or stunted growth, if he ate food that contained gluten. Therefore, foods such as breads, pastas, cereals, crackers, sauces and even many birthday cakes were off-limits.

"Lifelong adherence to the diet is necessary to maintain health," says Joseph Murray, M.D., a gastroenterologist and specialist in celiac disease at Mayo Clinic, Rochester, Minn. "And though the gluten-free diet is certainly restrictive, it doesn't have to be uninteresting."

Gibbs and his parents, Ted and Tilly Gibbs, had to learn a new way of cooking and serving meals. Challenges and struggles lined the way, but they handled them with ingenuity and perseverance. Gibbs — now a doctor in radiology training — says that it wasn't always easy, but with time and practice, the diet became almost second nature.

The early years: Before the diagnosis

Born in 1971, Gibbs was a happy, healthy — and chubby — baby. "I was a normal infant, healthy and growing," he says. "I was plump with big cheeks and big thighs. A normal, healthy kid."

It wasn't until Gibbs was about 3 1/2 years old that his parents thought he might have a health problem. He edged downward on the growth chart and had bulky, fatty stools. In addition, he often vomited after eating his morning breakfast, usually a bowl of cereal.

"We suspected there was something going on, but it was easy to think it would go away," says Tilly Gibbs. "When he went to the pediatrician for his 4-year checkup, he was found to be anemic and was showing a bit of the protruding abdomen that you see in malnourished children." The doctor ordered a series of tests, including a small bowel biopsy.

Testing and diagnosis: Finding the cause

Gibbs' father took him to his appointment for the small bowel biopsy — a procedure in which the doctor removes a tiny piece of the tissue from the small intestine and examines it for damage.

Gibbs remembers that test. "They told me that they were going to use a peanut on a noodle to do a test. The 'peanut on the noodle' was the endoscope that they used to go down my esophagus and look into my small intestine to get a biopsy." Not an easy test for someone so young, but by all accounts he handled it well.

Afterward, his dad bought him a chocolate doughnut to celebrate the completion of the test. The family remembers that last doughnut vividly, as it marked a new phase in his life. The procedure confirmed that Gibbs had celiac disease.

Celiac disease and the small intestine

Celiac disease — which, by some estimates, affects one out of every 133 people in the United States — damages the lining of the small intestine and interferes with its ability to absorb nutrients. If a person with celiac disease ingests gluten, it results in an immune system reaction that causes the lining of the small intestine to swell and become inflamed. And the tiny hair-like projections on the cells — the villi (VIL-li) — shrink and may even disappear. Without villi, you can't absorb nutrients from food. Over time, poor absorption (malabsorption) of nutrients deprives the brain, nervous system, bones, liver and other organs of their nourishment. Children are particularly vulnerable to long-term problems from malabsorption because they need proper nutrition to develop and grow.

Celiac disease: Effect on cells in the small intestine

Photograph with microscopic views of healthy and celiac-affected cells

These images show cells collected during a small bowel biopsy and magnified by a microscope. The slide on the left shows normal intestine and the finger-like villi, which absorb nutrients from food. The slide on the right, by contrast, shows the effects of celiac disease. The villi can no longer absorb nutrients because the intestine is inflamed and swollen.

Starting a gluten-free diet

Neither medications nor surgery cure celiac disease. The main treatment is a change in diet. So Gibbs started a strict diet that eliminated all foods or food ingredients containing gluten. He couldn't eat certain grains — wheat, barley, rye or bulgur, for example. And he had to avoid all foods made with these grains, such as breads, cereals, pastas, cookies, gravies, cakes and pies. "The comfort foods," Tilly Gibbs calls them.

In addition, the family had to read food labels carefully. Certain food ingredients — such as vegetable protein and malt or malt flavorings — also could contain gluten, because they originated from gluten-containing grains.

That didn't leave many options for Gibbs. "Back then, you had to go to Oriental or Asian food markets to find rice cakes. No one really knew what a rice cake was back then," says Gibbs. "And we certainly didn't have rice flour at our local supermarket."

So Gibbs' diet consisted mainly of fruits, vegetables, plain meats, rice and potatoes. With such restrictions, the family meal faced a major makeover. Tilly Gibbs says she had to learn a new way of cooking as she juggled her son's dietary needs with the needs of the rest of the family. "It was a challenge," she says.

But she was diligent and soon became adept at providing gluten-free meals. She formed a support group with other families, and they swapped recipes and food ideas. She also subscribed to a newsletter produced by the Gluten Intolerance Group. "When Gordy was first diagnosed, I really felt that my life had changed, and I wasn't sure how we were going to cope. But it became easier with time," she says.

Tilly Gibbs says she did what was necessary to make things easier for her son. For example, she put colored stickers on all containers with gluten-free foods, so he would know what foods were safe to eat. "There was a danger in this though, because Gordy got used to eating what we served at home," says Tilly Gibbs. "He had to learn to think through what was about to go into his mouth when he was in another environment."

Growing up and facing the challenges

School and social occasions, such as birthday parties, were hardest for Gibbs. "Throughout most of my early adolescence, I was a little bit embarrassed by eating a special diet. I just wanted to be normal, but I couldn't be," he says.

For school lunches, Gibbs brought rice cakes instead of bread for his peanut butter and jelly sandwich. At birthday parties, he ate ice cream with maybe a little frosting. At a fast-food restaurant, he ate a hamburger minus the bun. And in some cases, Gibbs would just bring his own food. "We always had to think ahead about where we were going and what kind of problems we might run into," says Tilly Gibbs.

At times it was hard to stick with the special diet, especially when influenced by friends and classmates. But he learned early the consequences of his actions. "I remember a time when I was in preschool," recalls Gibbs. "My classmates knew that I couldn't eat certain things, and one girl had a bag of Goldfish crackers, and she said that I couldn't eat them. So I said, 'Oh yes I can,' and I ate a whole bunch of them. I was sick for a couple of days. I learned my lesson quickly back then that I really feel miserable when I eat those foods."

Well-meaning adults, Dr. Murray notes, often insist on offering cookies and similar flour-based treats to "deprived" children like the young Gordy Gibbs. "It can be hard for uninformed people to believe that something as basic to the American diet as wheat can be damaging to some," he says. Over time, however, even trace amounts of gluten can lead to long-term complications including anemia, osteoporosis, seizures, cancer and, in children, stunted growth.

Watching out for gluten

The difficulty of the gluten-free diet, says Gibbs, is that many foods and food ingredients contain gluten. And at times, he still inadvertently eats something he shouldn't. This may happen at a restaurant where ingredients aren't listed or if a product isn't properly labeled.

"Occasionally I'll get into something where my stomach churns a little bit and I'll have some loose bowel movements. But it's usually not enough to knock me off my feet. Just enough to make me think there's something I shouldn't have eaten."

But other times, the consequences are worse. He recalls one such episode where he and his wife, Erin, went to a Mexican restaurant. "I got about halfway through the meal and I thought, 'I better think twice about eating this.' I looked at the dish again, and looked at the sauce, and usually I can tell right away just by the appearance that something's wrong or it's something I need to watch out for. But this, for some reason, looked normal to me. Then sure enough, for about four or five days afterward, I was in the bathroom every five minutes. It was awful."

Dr. Murray says that though most times a person with celiac disease will have symptoms after eating gluten, that isn't always the case. "Often the person can 'get away' with eating a small amount of gluten and not develop symptoms at that time. However if he or she keeps eating it over time, damage can build up in the intestine and lead to digestive complaints or other complications like bone disease or an increased risk of certain cancers," he says.

So Gibbs is very careful about what he eats, regardless of what symptoms he might have. And over the years he's become adept at spotting and avoiding gluten. "It's second nature, for the most part," he says. For example, thickened sauces are a red flag for him, as most sauces in American food are thickened with flour. Asian food is generally safe because it's often thickened with cornstarch. "Soy sauce has flour in it also," Gibbs comments. "But there are certain brands that don't. So there are little things like that that you pick up after a while."

In addition, he reads product labels when he isn't sure about a food's ingredients. For example, he always reads the package labels on frozen foods, such as TV dinners, and reads soup labels carefully. Many types of soup contain just a small amount of flour for thickening, and that's enough to make him sick. If a soup is thick, Gibbs says, it likely has flour in it.

Eating in: Making his own gluten-free foods

Gibbs made all of his bread at home for many years. "It was a piece of cake to make really good bread in the bread machine. And there are all kinds of recipes out there and specialty books that cater to gluten-free stuff."

Photograph of Gordy, Dominic, Erin and Patrick Gibbs
Gordy, Dominic, Erin and Patrick Gibbs

However, he now buys most of his bread at a local bakery that makes gluten-free breads. About once a week, he says, the employees at the bakery clean up their regular baking equipment, wipe everything down, get rid of the regular flour and then do a run of gluten-free breads. Because it's so readily available, Gibbs says that he doesn't do much baking anymore.

When he and his wife started their family, Gibbs says he was a bit concerned that their children might have celiac disease, which is possibly an inherited disorder. He sought information from Dr. Murray and his children's pediatrician, Dr. Jay Homme, about the best time to introduce wheat and cereals. He monitored each baby's reaction to gluten closely for signs of intolerance. The children will likely be tested for the disease when they're older.

Eating out: Selecting his options carefully

Though going to a restaurant is challenging for Gibbs, he doesn't avoid eating out. He says that most restaurants have enough variety that he can find at least a couple menu items to choose from.

However, he remains vigilant and inquisitive when ordering his meal. "I really have to ask a lot of questions and be really prudent in finding out about the meal. If the servers don't know, I just ask them to check with the chef. And usually they'll be able to look up the ingredients."

Staying the course: A long-term commitment

Gibbs handles his special diet with resignation and optimism. He says that he doesn't feel sorry for himself or feel like he's at a disadvantage. "I don't sit at home and wish I could have an English muffin or sourdough bread. I don't think about those things."

But he admits to the occasional craving. "When I smell chocolate chip cookies and they smell really good, I get a craving for them. Or if I'm at an Italian restaurant and they bring out a nice warm loaf of bread, it smells really good. But I don't really miss it. I don't feel bad for myself because I can't eat it."

And although he can't have a traditional birthday cake, he enjoys his ice cream alternative every year. As far as he's concerned, he wants for nothing in his diet.

Editor's note: After first sharing his story with us in 2003, Gordon Gibbs continues to manage his celiac disease with a gluten-free diet. His first child, Dominic, now 2 1/2 years old, is thriving and shows no signs of celiac disease. Because evidence suggests that infants at risk of celiac disease may be less likely to develop the disease if they're introduced to gluten relatively early, Gordon's second child, Patrick, now 7 months old, began eating gluten-containing foods between ages four and six months. For infants at no particular risk of celiac disease, the American Academy of Pediatrics recommends waiting until at least age six months before introducing gluten-containing foods.

Last Updated: 08/08/2005
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