Just a bite away

By Loretta Coureas

Skip the pizza and the pasta. Avoid pancakes and sandwiches. Say “no thanks” to the birthday cake.

Lauren Ashley Forbes isn’t even tempted by the foods she used to love. They make her sick.

The 12-year-old North Carolina girl prefers to feel tip-top, especially when she is cheerleading, playing basketball or softball or just enjoying her friends.

Two years ago, she and her family were beside themselves worrying what was causing Lauren’s constant cramps and stomachaches. She was always feeling tired and sickly and complaining of stomach pain – symptoms her parents didn’t know to connect to the diabetes she was diagnosed with when she was barely two years old.

Her endocrinologist at Children’s Hospital of The King’s Daughters listened to her complaints and was suspicious there was a link between her diabetes and another chronic autoimmune condition – celiac disease.

At CHKD, Reuben Rohn, MD, had begun screening his diabetes patients to decide if their abdominal problems relate to another chronic disease – celiac disease. A test of Lauren’s blood was positive for celiac disease, so he sent Lauren to another pediatric specialist at CHKD – gastroenterologist Lauren K. Willis – for a definitive diagnosis.

“Celiac disease wasn’t an obvious diagnosis for Lauren because she had been relatively healthy, even though she had diabetes,” Dr. Willis said. “It is a disease we often pick up in very young children who have chronic diarrhea and malnutrition. She was already 10 years old and didn’t have diarrhea.”

The symptoms can be subtle and often mimic other problems, she said. “Celiac is a chronic disease that affects the small intestine, though not always the entire surface of the bowel, so it can be hard to find even with endoscopic exam.”

For a conclusive diagnosis, Dr. Willis did an endoscopic biopsy of Lauren’s intestine, which can reveal if there is moderate to severe damage to the intestinal structures – known as villi – in the lining of the bowel. She determined without a doubt that Lauren has celiac disease.

At last, Lauren knew what was causing her problems. Even better, she soon found out she could get well and stay well by eliminating certain foods from her diet.

It was enough to make her jump for joy.

“I was sick and tired of feeling sick and tired,” she said, smiling at the play on words. “I wasn’t… like… devastated or anything…but I knew it would mean a big change in my life. I was ready to do just about anything the doctor said to feel better.”

Celiac disease has no cure. But the treatment is relatively straightforward. It requires strict avoidance of wheat, barley, or rye – all of which contain the culprit gluten protein.

Gluten is the protein in wheat that – in celiac patients – prevents nutrients from being absorbed by the digestive system. By triggering an autoimmune reaction, it is destructive to the small intestines, causing a variety of problems including malnutrition, diarrhea or constipation, abdominal pain, anemia, poor growth, osteoporosis and even cancer.

Pediatric gastroenterologists like Dr. Willis are trained to make the distinction between celiac and the more common diagnosis of allergy to wheat. “It isn’t always an easy call,” Dr. Willis said. She said CHKD gastroenterologists are currently treating 50 celiac patients, a number that grew considerably when our endocrinologists began screening diabetes patients just over a year ago.

When a patient with celiac disease ingests gluten, it doesn’t cause an immediate reaction like with other food allergies. The damage in the intestine takes place over time. However, the intestine eventually returns to normal when gluten is removed from the diet. “So, a return to eating wheat products means a return to illness,” Dr. Willis said.

For Lauren, the difference was like a miracle. She was transformed into a picture of health after a few weeks of a diet free of wheat, barley and rye, plus supplementary vitamins to replace the calcium and vitamins A, D, E and K lost while the disease went unchecked. “Her hair and skin improved, she felt stronger and healthy, and she didn’t have any more pain,” said her mother, Goldie Forbes.

Lauren, who was 10 when she learned she had celiac disease, took to her new diet so well that she even had to make changes in the basal rate on her insulin pump, which she wears to regulate her blood sugar level for her diabetes. Her mother says there is a bright side to Lauren’s life-changing revelation. “She learned very quickly how important it is for her to have strictly healthy eating habits.”

“I love food,” Lauren said. “I just have to avoid wheat – entirely – and keep my sugar in check.”

Her mom and dad have developed alternative recipes for most of the foods Lauren likes – like pizza and pasta, even hamburger helper. “Lauren and her dad and I do a lot of cooking and baking together,” Goldie said. “We have recipes tailored for gluten-free diets. And we use rice flour, potato starch flour and other substitutes when we cook.” Since eating out is out of the question, meals are always planned and enjoyed together. “The truly bright spot in all of this is that we all eat healthier – everything’s fresh and we take no short-cuts,” Goldie said.

When Lauren anticipates those inevitable outings with friends – whether to celebrate winning their basketball or softball games or going to a birthday party – she takes along her own snacks. “I can make a gluten-free pizza and a great cake,” she said. “And I like fruit snacks and sugar-free ice cream.” Homemade gluten-free cheesecake has become her dessert of choice!

David Forbes said his daughter is a remarkable girl who just keeps on meeting her challenges. “She is so happy to be well that she gladly takes on the responsibilities of her diabetes and her celiac disease,” he said. “Our trips to CHKD a few times a year are well worth seeing Lauren stay healthy.” Lauren goes to CHKD’s Health Center at Greenbrier in Chesapeake, an hour’s drive from her home in Camden, N.C., for her checkups with Dr. Willis. During her visits, they talk about living with celiac disease and cover all the aspects – emotional and social as well as nutritional.

“Lauren is a very special girl to balance her life with two serious chronic illnesses that severely limit her diet,” Dr. Willis said admiringly.

“When you think about it, nobody is perfect,” Lauren said. “I know another kid who has celiac disease, and friends all have their flaws. One has panic attacks and another has asthma. You just go with what you can’t change and learn to deal with it.”

Her mother affirms Lauren’s wisdom. “She is my hero. She never complains. She finds a way to deal with whatever comes her way.”

Important qualities for a young lady whose life depends on staying focused to stay healthy.

Drs. Rohn and Willis practice with Children’s Specialty Group PLLC at CHKD.

This story was featured in the second quarter 2005 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.