May 8, 2007

Living with celiac disease

by Matthew Hegarty, Contributing Reporter
Liberty University junior Chrystal Hamrick was sick as a teenager. Often in and out of the hospital, Hamrick had severe back problems and extreme fatigue. In addition, her body would not retain food. Aside from losing 20 pounds in a month at one point, Hamrick could only eat one-quarter of the portions she should have been consuming, and for only two meals per day.

“I would be starving, but then I would eat two bites and I’d be completely full,” she said.

Despite Hamrick’s obvious health issues, medical professionals could not discern the source of the problem. They put various diagnoses on her such as irritable bowel syndrome, constipation and menstrual cramps, but nothing they could try seemed to work. Then, in December 2005, her family physician, Dr. Rafik A. Nasr, made a breakthrough when he diagnosed her with celiac disease.

According to the Web site of the National Institutes of Health (NIH), which is a division of the U.S. Department of Health and Human Services, celiac is a digestive condition in which sufferers cannot digest gluten, a protein found in wheat, barley and rye.

In a normal person, the gastrointestinal system has no problem breaking down gluten and other similar proteins so that they can be absorbed into the bloodstream. However, when gluten travels into the small intestine of an individual with celiac, it damages or destroys the small intestine’s villi, which are tiny, fingerlike protrusions in the intestine that perform the absorption.

In severe cases, intestinal leakage may occur, which allows gluten and toxins to partially infiltrate the bloodstream. In addition, the NIH Web site lists the vast majority of symptoms, which may also include anemia, joint pain, muscle cramps, seizures and infertility.

Danna Korn, a national advocate for the gluten-free lifestyle and writer of the landmark book “Eating Gluten-Free for Dummies,” said she informs groups every time she gives a presentation that “wheat isn’t good for anybody.”

When Korn’s son, Tyler, was originally diagnosed with celiac in 1991, she was devastated. However, she said she gradually awoke to the fact that the diagnosis was actually a blessing in disguise, because she realized that cutting gluten out of one’s diet was essential to living a healthy lifestyle.

“We have the key to better health, and that’s why it’s so cool to be diagnosed,” she said.

Korn is also the national leader of a support group she started called “Raising Our Celiac Kids,” or R.O.C.K. for short. However, she does it solely on a volunteer basis, giving her spare time, money and resources to get the word out about celiac and the benefits of living gluten-free. Even though it requires extra energy for her to do her “gluten work,” she maintained that it was very rewarding.BR

“Every day, I get e-mails from people saying, ‘You changed my life,’” she said. Hamrick said that, for her, the diagnosis of celiac disease meant that her previous eating patterns would have to cease.

“I had to do an immediate change,” she said.

She said that she had to endure a detoxification period, during which her diet was drastically limited. She began to see the benefits immediately, especially with regards to her fatigue. However, that did not mean that it was not difficult to completely cut gluten products out of her diet.

“I really didn’t comprehend what it meant to not have wheat,” she said.

Liberty sophomore Amanda Daniele trod a similar path in her journey to celiac diagnosis that Hamrick did. As an infant, she could only tolerate three days of baby formula and four days of water, but her body had difficulty retaining even that.

With Daniele’s progression of age came misdiagnoses, but in her case, doctors said it was colitis, then Crohn’s disease. Unfortunately, both conditions require special diets that are high in whole grains – exactly what she needed to avoid.

The silent celiac thus continued to wreak its havoc until Daniele was 14, when she dropped from a healthy 110 pounds to a severely underweight 70 and doctors discovered that she had developed intestinal cancer. At this point, the diagnosis of celiac became painfully obvious, quite literally.

Like Hamrick, the dietary change was immediate for Daniele.

“I went cold turkey,” she said.

She subsisted on rice, fruit and vegetables for about a month and, despite dealing with depression, was able to resume her normal eating patterns, minus foods containing gluten, in three months.

However, she is now so sensitive to gluten that she has to have her own Tupperware and silverware, all of which are marked “gluten-free.”

“I kind of have my own side of the kitchen,” she said.

Daniele affirmed that the celiac diet was a huge adjustment for her. Even though she can still enjoy indulgences like ice cream, soft drinks and Gummi bears, those items are certainly not staples of her nutrition.

“It’s definitely not something that’s easy to get accustomed to,” she said.

At Liberty, dining options for both girls were severely limited at first. Hamrick, the first celiac sufferer to call attention to her condition, ran into difficulties when she tried to explain her dietary condition to the staff at Reber-Thomas Dining Hall, the main dining facility on campus. To make matters worse, celiac sufferers like Hamrick and Daniele, if they live on campus at Liberty, are essentially locked into their meal plans without an option not to purchase one.

However, Hamrick said, after she had encountered difficulties with dining hall staff members who did not fully understand her condition, she set up a meeting with John Harding, a dining hall administrator, and they worked out a plan for the food.

Since then, she has not had any major difficulties, and she greatly appreciates what the dining hall staff is doing to accommodate her and others like her.

Daniele had quite a different experience. Her mother had called Liberty during the application process to see if a gluten-free dining program existed. Daniele said that, when she arrived on campus, she was given poor advice by a chef and could not keep food down for her first two weeks in Lynchburg. Meanwhile, she gained 20 pounds.

She finally journeyed to Light Medical – the campus medical facilities – and to a gastroenterologist, where blood work and tests showed her intestines inflamed to three times their normal size. She then obtained a note from Light Medical that documented her condition and required the dining hall staff to review dining options with her.

After Daniele spent an estimated $700 per month for three months on buying and cooking specialized gluten-free food for herself, she finally got the situation ironed out with the dining hall. She, too, now highly praises the dining hall staff for their special concern for students whose health requires a gluten-free diet, even though they have to cook regular meals for thousands of other students simultaneously.

“They do the best they can,” she said.

“They’re giving their all, and that’s all I can ask.”

Thurma Smith, one of the chefs at the dining hall, is the main chef that cooks the gluten-free foods for the celiac sufferers at Liberty. Smith, who served in the U.S. Army for 12 years before coming to Liberty, said that her special dietary training in the military prepared her well for cooking for them.

“I knew about the dos and don’ts, what they could eat and what they couldn’t eat,” she said.

Smith is also the head chef over the vegetarian and international lines in the dining hall. Because the gluten-free students are so limited in food choices, Smith said, she tries to make her cooking as interesting as possible for them.

She prepares dishes such as Tuscan chicken and salmon and rice, but those occur less often than the most prevalent option, which is soy-free stir-fry. She tries to add variety to the seemingly monotonous Asian dish by using different meats and spices.

“I just feel good about being able to cook for them, and they let me know every day,” she said.

“I don’t want to give them the same thing every day.”

When Korn found out about Liberty’s efforts to cater to its gluten-free students, she was ecstatic.

She said, “Universities around the world should be doing this!”

Contact Matthew Hegarty at mjhegarty@liberty.edu.

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