Living with Celiac

Families find ways to combat disease with lifestyle changes

Photo with no caption
By Lance Coleman
Senior reporter
Blount Today

Cole Ford celebrated his seventh birthday at Maple Lane Farm recently, complete with a hay ride, presents and a special cake. What made the cake special wasn’t just the UT jersey design, but the planning and effort that went into baking a cake Cole could enjoy at all.

Cole has celiac disease, which makes gluten, the protein found in wheat, barley and rye, intolerable to his system. Those with the disease can not tolerate gluten.

Celiac affects 1 in 133 Americans, according to the Celiac Sprue Association. The disease is often incorrectly diagnosed, and the association estimates that only 3 percent of those with the disease have been diagnosed.

Celiac disease damages the absorptive villi or finger-like lining of the small intestine, preventing it from absorbing nutrients. Even small amounts of gluten can cause damage to the small bowel and damage occurs even in the absence of symptoms. Left untreated, celiac disease can cause other conditions ranging from lactose intolerance to tooth enamel decay,
malnutrition, osteoporosis, iron deficiency, intestinal lymphomas, pancreatic disorders and autoimmune diseases such as lupus.

While there is no cure, it can be treated with diet.

Which sounds simple on its surface. But three Maryville families know the reality of living with celiac. The Rick Ford family, Tim McConnell family and Micky Roberts family all deal with celiac disease on a daily basis.

The diagnosis
Cole Ford was 4, but he wasn’t growing.

Dr. Tim McConnell was 40, and getting sick every time he ate.

David Roberts was 4, and his acid reflux was in full force.

"Even when (David) was a baby, he would spit increasing volumes, said his mother, Susan Roberts.

"We thought he would grow out of it," said father, Micky. But at 4, "he just kept spitting up."

Shawna McConnell waited with increased anxiety as her husband, Tim, lost a little more weight each year. "Something was wrong. People don’t get sick every time they eat. Then he lost another 10 pounds and looked very pale. It got to the point he couldn’t eat," Shawna said. "I thought he had colon cancer."

Cole Ford was simply sick all the time, his mother, Tammi said. "We went four years not knowing. We used to be in the hospital four weeks collectively a year. He coughed, had acid-reflux. I look at home movies of my son at 3 or 4, and every three seconds, he coughed."

For Cole, the diagnosis came through checking the acid reflux. "Doctors at Children’s Hospital did a biopsy and determined Cole had celiac disease right before his fourth birthday," Rick Ford said. "They called us and said, ‘We’ve diagnosed him with celiac,’ and I said, ‘What?’ I had never heard of it."

Rick Ford’s mother, Carolyn Ford of Knoxville, echoed her son’s thoughts following Cole’s diagnosis. "I had never heard of it," she said of her reaction to Cole’s diagnosis. "He was like a malnourished child."

Tammi Ford’s mother, Janice Owens, said she knew something was wrong with her grandson. "He was losing weight. His skin was pasty. I didn’t know anything about celiac. We’ve learned a lot. I’m here to tell you -- celiac, it’s another way of life, but it’s a healthy way of life," Owens said.

Tim McConnell’s diagnosis came through a colonoscopy.

"I had several years of not feeling well, just a lack of energy, stomach pain, diarrhea," Tim said. "Then my wife kept saying you need to get it checked. I went to get a colonoscopy, and it revealed I had celiac."

When Tim McConnell was initially diagnosed, he was skeptical. "I thought, ‘Are you sure?’ I had had symptoms for three or four years and had been in denial. I had been self-regulating my diet with no spaghetti and no hamburger buns," he said.

The Roberts had blood work done on David and, in December of 2001, they got the call that he had celiac. "It was right before Christmas, and we thought, ‘We are not going to change to a wheat-free diet before the holidays. We’ll wait and do it at New Year," Susan Roberts said.

The celiac lifestyle
Tammi Ford stood in the middle of the grocery store, reading food labels, and cried. "That was two years ago," she said. "Now all the allergens are listed on food labels. Now I know, I can deal with this. It’s not fun, but I’m dealing with it."

So well, actually, that Tammi is often a resource for others dealing with the disease.

"A lot of people call her," said husband, Rick. "Her name goes through the ‘grapevine’ as someone to talk to, and she tells them where to shop."

Susan Roberts said networking has become important in dealing with celiac. Celia-Act, a parent group, was organized at East Tennessee Children’s Hospital. There is a dietician on their staff, and the group members meet every other month.

"We’ve got some people who are older, too," said Susan. "There are a lot of kids. I didn’t know anybody. Tim and I were both in the medical profession, but didn’t now anything about it," Susan said. "I remember how awful it was not having anyone to talk to. I will talk to anyone about it."

And the issues, especially for children, are many. Eating out, school events, birthday parties, visits to friends’ houses, where to shop, recipes -- it’s a new lifestyle for those who have celiac, if they want to remain healthy.

Tammi Ford said that much of the early days of dealing with the situation was trying to figure out what to eat.

Having a network of friends who deal with the same problem makes it easier to find out not only which foods are safe to eat, but what tastes good, Tammi said.

"My first reaction was to buy gluten-free Oreos, only to bring it home and hear him say ‘I’m not eating that,’" Tammi said.

The McConnell family now checks ingredients on processed food closely, and they eat more home-prepared food. "We still have cakes, pastas, breads," Tim said. "Shawna has become a gourmet cook with alternatives."

After Tim started a glutton-free diet, he noticed a difference. "I gained 40 pounds, felt 20 years younger, had a lot of energy and had no stomach aches. I felt healthier," he said. "The down side was I have three children who all had the genetic trait. Over time, they’ll have a chance of developing celiac as they’re exposed to gluten."

But after not knowing what was wrong, the diagnosis was the beginning of a better life, said Tim. "The good news about celiac is, you’re glad to know you have it."

After he took steps to regulate his diet, there were challenges. Eating with others at birthday parties isn’t easy, especially for children. "That’s when it’s tough," he said. "You’re looking at a whole new lifestyle, but it doesn’t include one of the four food groups - grains," he said. "You make up for it with fruits, vegetables and meats."

Often the gluten is hidden. "Soy sauce has wheat, so that’s out," said Tim. "Chicken McNuggets, pizza. On a daily basis you try to figure out what to eat. It’s a major chore."

And he’s an adult. For the children, the challenges are even greater.

Graysen McConnell, 10, said she can make cookies, cakes and pancakes using gluten-free ingredients. She said the first gluten-free pizza the family tried wasn’t tasty. "It wasn’t good, but it’s gotten better," she said.

Janice Owens, Cole Ford’s grandmother, said they go to restaurants like Outback, Texas Roadhouse and Wendy’s where there are entrees Cole can eat safely. "A lot of places we can’t go, but that’s all right," she said. As for sweets, "We make our own cookies and cakes."

A Ford family friend, Kay Yoakum, has a son, Nicholas, who is the same age as Cole. Tammi and Kay were childhood friends and their two sons were born on the same day.

For Nicholas’ recent birthday party, Tammi called Kay ahead of time to find out what kind of cupcakes she was having for the party. She matched the cupcakes to what her friend was serving.

"She matched it so nobody knew the difference," Kay said. "Nobody at the party even knew that his cupcake was any different. I also worked with Tammi to make sure we had things Cole could eat -- like Doritos and Lay’s barbecue chips."

Adjusting to learning which foods his son could eat took time because labels had to be read to determine if the food had gluten in it, said Rick Ford. Since the Food and Drug Administration mandated companies list allergens on food labels, the chore has become easier, he said. "It says gluten-free if it is, and, if it doesn’t, you don’t even mess with it," he
said. "That’s made it easier."

The difference is apparent in Cole’s health. "He’s as healthy as can be, and he can play sports," Ford said. "Thank goodness it’ not something a whole lot worse. He’s healthy, hardly ever sick."

Cole isn’t the only one with a gluten-free lifestyle. His parents adopted the same diet. "Once you’ve made the adjustment, it’s a piece of cake, thank goodness. It’s incurable, but you can adjust to it and live a normal life," he said.

Tammi Ford said Cole has learned what he can and can’t eat. "He’ll say, ‘Mom, can I eat this?’"

The doctor told the Fords that if Cole stuck to a proper diet, they wouldn’t recognize him in three months. "He was right," his grandmother Janice said. "Now, if Cole sees me reading a box (for ingredients information) and he senses any doubt, he won’t eat it. He remembers how sick he was."

Susan Roberts said it wasn’t until a while after they found out about their son’s condition that she realized she was going to have to look closely at food labels to know about allergen contents. "It didn’t hit me until I was at work that you weren’t necessarily going see ‘gluten’ on the label. You have to look for wheat and flour," she said. "The first week or two, I was a basket case."

Micky Roberts said they worked hard to make it easy for David to fit in when they went out to eat. "We had to call restaurants ahead of time and work it out with them to see if they could serve him food he could eat," Micky Roberts said.

The Roberts also started shopping at different grocery stores that offered celiac products. The new diet wasn’t cheap, said Micky.

"It cost a fortune," he said. "It was about four times the normal amount."

Susan Roberts said some of the food was hideous when they started the new diet. "The rice bread was like Styrofoam. I learned to make good breads," she said. "The hardest thing was those first three to six months. You’re on the steep part of the learning curve as far as what you can fix."

Often gluten is hidden in foods. David can eat Baskin Robbins ice cream, but not all ice cream. "Some ice cream places add gluten as a thickener," Micky Roberts said. "You’re always constantly investigating."

Susan Roberts said when checking for gluten, individuals must get into the habit of looking at food labels, even those they’ve looked at previously. "Even four years later, if it’s something I haven’t checked on in a while, I’ll call it up again," she said of checking information via the Internet. "I have noticed since the food label law was passed last year, they have to have the top eight allergens on the label. That has helped."

Micky Roberts said information is the key. "The most important key is not how much (gluten) they get," he said. "It’s if they get any at all. It’s what causes damage - just a crumb of bread."

David’s 11-year-old sister Laura has the celiac gene, but it isn’t active.

Laura said she started the celiac diet on Labor Day. "I really don’t like it that much," she said. Laura said eating some of the new food hasn’t been pleasant, and she described some of the gluten-free items as "gross."

Having their own special foods has helped Laura in one sense. "We have desserts just for us, so daddy can’t steal my desserts," she said.

David said that once someone gets used to the gluten-free diet, it’s not that bad. "At first it’s a lot worse because you’re just getting used to something different than what you already had," he said.

Micky Roberts said dealing with celiac has taught his children to consider the ingredients in whatever they eat. "I think it’s made both of them think more about food. A lot of people take it for granted and don’t think about what they’re putting in their body," he said.

Shawna McConnell said when she found out her children had the celiac gene, it was right before Valentine’s Day of this year.
"I felt so sorry for them to not be able to go parties and eat whatever they wanted," she said. "It broke my heart."

Shawna said she doesn’t expect other parents to work around her children. Her son Colton has his own snack box he pulls snacks from daily.

Having a spouse and three children living with celiac hasn’t been cheap, she said.

"It’s very expensive," she said of the gluten-free grocery bill. "A good estimate is that it tripled."

Shawna McConnell said the lifestyle change has been positive. "We eat healthy. You can’t eat Twinkies. We eat meat, fresh fruits and vegetables."

The network
Micky Roberts said that his advice to parents dealing with celiac disease in their children is simple, but hard to heed. "I would say don’t panic, but they’re going to panic at first," he said.

Susan Roberts said it is normal to be upset initially. "You’ve got to have that time of grieving. You’re grieving a loss of normalcy," she said.

But Susan said she realized that her son’s diagnosis could have been so much worse. "It’s OK to be sad," she said. "Once you get past that, you can help your child and not focus on that. I cleaned out a cabinet and put all the gluten-free stuff in there so he can see that he does have a lot of choices.

"Focus on things they can have," she said. "I can fix him a bunch of good breads and really great, gluten-free cookies, and he’s not missing out on anything."

Micky Roberts said that as his children become teenagers, they’ll have to deal with situations such as going to eat pizza with friends just to fit in with their crowd. "It makes you realize how central food is to our culture. What do we do? We get together and eat."

When asked what they want others to know about celiac, both Roberts children were straightforward. "Don’t treat me any differently," Laura said.

David said friends can ask him about the celiac or never mention it. Either is fine with him, he said.

"Just don’t be mean about it," he said.

Celiac disease - the statistics, the effects and the treatment
Being diagnosed with Celiac often leaves people with more questions than answers about what the condition is and how it affects the body.

According to the Celiac Sprue Association website, www.csaceliacs.org, 1 in 133 Americans have Celiac, but only about 3 percent have been diagnosed. This means about 2.1 million Americans have the disease and haven’t been diagnosed. Also, it is not age-dependent, can become an active disease in individuals. In addition, while Celiac has not cure, it can be treated with diet.

Celiac is a disease that is often misdiagnosed, but when its symptoms are taken together and tests are done, the picture of the disease becomes clear. October is National Celiac Disease Awareness Month. Blount Today spoke with several area families to learn more about the disease, how people treat it and how it completely alters lifestyles.

Celiac - the disease
According to Celiac.com, Celiac Disease damages the absorptive villi or finger-like lining of the small intestine, preventing it from absorbing nutrients. Even small amounts of gluten can cause damage to the small intestine and damage occurs even in the absence of symptoms. Left untreated, celiac disease can cause other conditions ranging from lactose intolerance to tooth enamel decay, malnutrition, osteoporosis, iron deficiency, intestinal lymphomas, pancreatic disorders and autoimmune diseases such as lupus.

According to Celiac.com, the disease is genetic and most commonly occurs in Caucasians of European descent. It can appear at any age in people with a hereditary predisposition to the disease. It may be triggered by overexposure to wheat,
extreme stress, viral infection, pregnancy or surgery.

© 2006 blounttoday.com. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

  • Discuss
  • Print

Comments » 0

Be the first to post a comment!

Features