Just sitting down for dinner can be a chore for someone like Paula Chesney. The Bluffton resident has celiac disease. Her body can't process gluten, a protein which occurs naturally in wheat, barley and rye. She has to check to make sure everything she eats doesn't contain gluten. And that goes well beyond bread, pasta and beer.
Chesney studies food labels like a lawyer looking for loopholes in fine print. "Food starch" -- probably a no-no. Can't eat it. She has a list of local restaurants that offer gluten-free menu items. If she goes elsewhere, it can be risky if she's not careful. Once she went to a restaurant and asked if the chef was familiar with gluten intolerance. "Sure," the hostess said. "Salt free, right?" Not quite.
And that's the life of a celiac sufferer.
A celiac sufferer has an abnormal immune reaction to gluten, causing damage to the lining of the small intestine and problems absorbing nutrients, Hilton Head Island gastroenterologist Dr. Michael Gilbreath said. Symptoms can include abdominal cramps, diarrhea, gas and a range of other ailments. Because it hinders nutrient absorption, it can lead to such problems as malnutrition and osteoporosis.
One in 133 Americans is suffering from the disease, according to the National Foundation for Celiac Awareness. It can be overlooked or misdiagnosed because the range of symptoms, particularity the more mild ones, might not initially indicate celiac disease.
Chesney was diagnosed eight and a half years ago. After being bounced around to different doctors, she found one on Hilton Head who told her she had celiac disease. She had been previously misdiagnosed with other afflictions, she said. The average celiac sufferer has a gap of about 10 years between the time he or she develops the disease and the time it's properly diagnosed, according to the foundation.
No cures exist. Like an allergy, the simplest method is to simply avoid what causes it, Dr. Gilbreath said. With celiac disease, that's gluten. It's a practice Chesney still is trying to perfect.
She prefers simple recipes and simple ingredients. She and her husband, Jim, eat a lot of whole foods, fish and meats. Sometimes she prefers to fill up with a salad rather than risk it with something more complex. But even with salads, she has to be careful with dressings, especially blue cheese. Blue cheese is made with mold grown on bread. It's enough to trigger symptoms.
When she goes to a restaurant, she will politely excuse herself from the table to find a maitre d' or chef and discuss the menu. She has a card from Gluten Intolerance of North America. A paragraph that nearly takes up the back of the card explains what she can and can't consume.
But even then, she still has to be careful. Some restaurant tricks -- such as putting flour on steak to brown it for appearance -- will trigger symptoms. And she's still learning.
Chesney once got a 10-inch pizza on gluten free bread from a local pizzeria. It was fine. But she ordered it again and got sick. She was laid up for a day with pain and weakness. The likely problem: The gluten-free crust had come into contact with regular bread. Chesney said a friend with celiac disease once ate gluten-free bread and got sick because it was cut with the same knife used for regular bread. Chesney is usually not that sensitive, but that's how bad it can get.
She likes to play it safe when she goes out, maybe to the Original Pancake House for gluten-free pancakes, Truffles for gluten-free pasta or The Sugaree for gluten-free chocolate chip cookies. But it can get frustrating not having the same culinary freedom as others. Dinner parties become tests of social etiquette. How should she ask what's in the recipe without offending the host? Even a cook with good intentions can slip up. That canned soup included in the recipe might look harmless, but it might contain a gluten stabilizer.
"You just have to learn how to adapt," she said, "You learn how to live with it."
A restricted diet can take some of the fun out of eating. But, sometimes, there are moments where it makes a meal all that much better. She and her husband went to Jekyll Island for Thanksgiving last year. At a buffet she enjoyed gluten-free rolls that were some of the best she ever had, gluten-free or otherwise. Another woman saw her at the buffet and gave the same accolades about the rolls. They were "amazing," she said. It's rare that you get "amazing" with gluten-free. You usually just get "OK."
"Those rolls were so good, that's all I wanted to eat," she said. "That's what I gave thanks for."