NFL Star Rich Gannon Scores One for Celiac Awareness
By Alicia Pitzer

Oakland Raiders quarterback Rich Gannon is a seasoned veteran of professional football’s toughest competitions, yet his -– and his family's -- greatest struggle has been off the field. Just three years ago, while Rich was breaking career records, his infant daughter, Danielle, was battling for her health.

Danielle was born in 1997 when Rich was a starter for the Kansas City Chiefs. That year, the Chiefs celebrated five straight victories and won the AFC West division title. But the picture wasn't as rosy at home. Almost from birth, the baby had health problems.

"She was a sickly child -- really fussy," says Rich's wife, Shelley, of their second child. "Her sister, Alexis, didn't sleep through the night when she was a newborn, but it was nothing like this."  "We'd put her in bed at seven or eight o'clock, and she'd wake up screaming throughout the night," Rich explains.

Shelley knew something was wrong. But finding a reason proved complicated. Because of Rich's job, the family spent part of the year in Kansas City and the remaining time in their Minnesota home. Commuting required Shelley to take Danielle to two different physicians.  "The doctors examined Danielle over the weeks and months. She had a multitude of ear infections and took a lot of antibiotics. They kept telling me she was fine," Shelley remembers. "Meanwhile, she was screaming, in pain, and getting worse and worse."

As the months went by, Danielle developed vomiting and severe diarrhea. With growing concern, Shelley continued taking the baby to the doctor but received little guidance.  "Danielle was losing weight, and her stomach was really bloated. She was like a child starving in front of our eyes," Rich states. "The pediatrician told us to change her formula, but that didn't help."  "I think the fact that we were always moving and going to different doctors meant that we lacked medical consistency in terms of someone noticing symptoms and paying attention to the changes," Shelley theorizes. "The doctors were telling me that my baby was fine, that there was nothing wrong and that I should just let her cry. I knew it wasn't right. It was against all my instincts. I felt like the physicians thought I was nuts."

Finally, the doctor’s office in Minnesota steered Shelley and Rich to a specialist -- a gastroenterologist.  "By this time, Danielle was having diarrhea and throwing up at the same time. We were at the doctor's office that morning, and she couldn't stop vomiting. She was so sick that we rushed her to the emergency room," Shelley recalls.

Looking back, the whole ordeal is now a horrible blur -- a sick, screaming baby and a nightmare of tests. "I was so sleep deprived that I was just out of it. There were days of tests where they would pin her down and she'd be struggling to escape," Shelley remembers. "I knew we needed to have these tests to find out what was wrong, but there were times when it was so upsetting to watch that I had to leave the room."

Eventually, the doctor ordered an endoscopy to check the condition of the toddler's gastrointestinal tract. The results revealed that Danielle had celiac disease.  Celiac disease is a genetic hypersensitivity to the gluten found in wheat, barley, rye, and sometimes oats. As the disease progresses, villi in the small intestine are flattened and become unable to absorb vital nutrients because of a reaction to gluten. The disease causes a wide range of symptoms, including gastrointestinal problems (diarrhea, vomiting, stomach pain, gas, bloating, and constipation), weight loss, weakness, and chronic fatigue. Children with celiac disease, like Danielle, often fail to thrive. Instead, they lose weight and stop growing. Because the disease impairs digestion and absorption of vital nutrients, it ultimately leads to serious malnutrition and accompanying conditions, such as osteoporosis and anemia. The only treatment is a complete avoidance of gluten.

The Gannon's first reaction to Danielle's diagnosis was, "Celiac disease? What is that?"  "We had never heard of this condition, but we were thrilled that we finally knew what the problem was and that we could solve it by changing her diet," Shelley remarks. "It seemed like a simple solution."

A Whole New World

Rich returned to training camp, while Shelley met with the hospital dietician, who gave her several information sheets about celiac disease. While awaiting discharge, Danielle was given a bowl of cereal, which caused her to vomit a short while later. It was Shelley's introduction to the nuances of the celiac diet.

"The hospital didn't know that certain ingredients in the cereal weren't on the celiac diet," Shelley says. "Our first stop on the way home from the hospital was the health food store. I had to change Danielle's clothes in the car before we could enter the store because she was sick from the hospital food."

Shelley will never forget that first shopping experience. Walking down the aisle and painstakingly reading dozens of ingredient lists for the first time in her life, the reality of the diet hit her.  "I just stood there in the middle of the store and began to cry," Shelley remembers. "I kept looking at labels and couldn't find any that said 'gluten free.' I felt completely overwhelmed."  Uncertain of what was safe to give Danielle, Shelley fed the little girl rice for days while she looked for help and more information. She finally located the Celiac Sprue Association, USA, which provided guidelines about acceptable foods.

"The biggest help was when my doctor's office had Linda Benkofske, a mother of celiac child, call me," Shelley says. "She came over to my house and told me everything about the diet -- what to buy and where to get it. It was a godsend."  A support group for celiac families was later organized in Shelley’s area. Supporting Our Celiac Kids meets regularly and hold family picnics and parties a couple times a year.  "It took me a good year and a half to get to the point where I was comfortable with the diet and knew what was safe and available," Shelley states.

To ensure her daughter kept on the diet, she became proficient at reading product labels and spotting suspicious-looking additives and flavorings that might contain gluten. "It was constant work, particularly at first. I'd be in the grocery story for three hours, reading labels," Shelley says. "Rich would ask, 'Where in the world have you been?'"

In 1998, Rich left the Kansas City Chiefs for the Oakland Raiders, and the family moved to California.  "Moving held me up because many of the product brands in California were different from those in Minnesota," Shelley declares.

Danielle has thrived on the gluten-free food, growing stronger and finally sleeping soundly through the night.  "Danielle is now three and is doing wonderfully. From the moment we started the diet, we could see improvement. It was almost immediate," Rich observes. "The crying stopped, and she was smiling again."

Putting the whole family on the diet brought unexpected positive results.  "We eat a lot healthier now -- lots of fresh fruits, vegetables, meats. Baked potatoes and rice. We eat a lot less processed stuff, and we don't eat fast food at all any more," Shelley notes. "It's very important for Rich's job that he eat a healthy diet, and this has been a real bonus. It's been good for the entire family."

This is an excerpt from the Winter 2001 issue of Sully's Living Without. To purchase the issue containing the entire article Click here.

Rich Gannon is a spokesperson for BraveKids.org, a non-profit organization that helps kids with chronic or life-threatening illnesses by utilizing the power of the internet as a Resource Center and Computer Donation Program.

Check out this Gluten-Free Cookbook....