Imagine skipping a fish fry on Friday or passing up cake at a wedding. Nancy Ross also says no to Godiva chocolate, big thick sandwiches and thin crusty pizza.
It isn't easy living gluten free.
"I went to a wedding last week and I couldn't eat any of the appetizers," said Ross of Williamsville, who was diagnosed with celiac disease last April.
Celiac disease -- affecting one of 133 people -- is a digestive illness set off by consumption of gluten, a protein found in bread, pasta, cookies, pizza crust and other foods containing wheat, barley or rye. The consumption of gluten triggers an immune reaction in the small intestine, causing damage to its surface and an inability to absorb nutrients. The exact cause of celiac disease is unknown, but it's often inherited.
Medical experts have called the gluten-free diet one of the most difficult to follow, but recently this restrictive (and often costly) way of eating has become a popular health trend, even among those who do not have celiac disease.
"It is very trendy, and I think Elisabeth Hasselbeck on 'The View' has really promoted it, but she has celiac disease," said Dr. Jeanette Keith, a gastroenterologist with Kaleida Health. "Her preference is that everyone should be on a gluten-free diet because gluten causes inflammation. Again, there are no studies showing that people who don't have celiac disease should absolutely eliminate gluten."
Does gluten adversely affect all of us?
"I can't rule it out," Keith said. "I don't put people on a gluten-free diet routinely. There's no reason to exclude it unless you have a personal preference. I think it's a difficult diet to maintain, but if you're doing low-carb eating for optimal health you would eliminate most of the gluten anyway."
Most people with celiac disease have general complaints, such as intermittent diarrhea, abdominal pain and bloating. In addition, the symptoms can mirror those of other sicknesses including irritable bowel syndrome, gastric ulcers, Crohn's disease, anemia or skin disorders.
"It's difficult to diagnose because it presents with nonspecific symptoms," said Keith. "It is much more prevalent than we thought. The challenge is that most people might not come to the doctor until the symptoms are severe."
If you do try to be gluten-free, baking without gluten -- a protein found in wheat and other grains -- is extremely tricky, requiring replacements for wheat, barley and oats. It's doubly difficult in a restaurant, because even a trace of gluten can cause immediate gastric distress in celiac sufferers.
>Grocers catch on
When Krista Van Wagner's sister was diagnosed with celiac disease, the experienced chef decided to master the arcane art of gluten-free baking at Curly's Grill, her Lackawanna restaurant. She unveiled her new gluten-free pizzas to some invited guests, board members of the Western New York Gluten Free Diet Support Group.
"One of the women got up and ran to the bathroom," Van Wagner said ruefully, still embarrassed eight years later. "Then a second person got up. I go, 'Oh boy, I'm in trouble.' Something was contaminated, and I don't know what."
Instead of giving up, Van Wagner buckled down. After apologizing profusely, she threw out $200 worth of finished muffins and pizza crusts, and started over from scratch.
Today, Curly's offers a gluten-free menu to all guests, complete with baked goods, making it one of the area leaders in serving gluten avoiders. At industry meetings, Van Wagner urges other owners to join a growing group of Western New York restaurants with at least some gluten-free dishes.
Once mainly a concern of celiac disease patients, millions more Americans who might be sensitive to gluten, or who avoid it for other dietary reasons, are hungry for options. Responding to the demand, Western New York restaurants, supermarkets and bakeries are catering to gluten-free eaters like never before.
Not long ago, gluten-free eaters could trust only food they cooked themselves, and they bought obscure ingredients from health food stores or by mail order. These days, they can go into a Wegmans supermarket and find gluten-free groceries labeled throughout the store, not limited to a shelf of specialty products. Wegmans has even started test-marketing gluten-free choices in its fresh prepared meals section, in its Sheridan Drive and West Seneca stores.
"The biggest thing is that we're seeing growth in products offered," said Wegmans nutritionist Theresa Jackson. "You're seeing things being labeled by manufacturers and ourselves simply to address the need," overflowing the "natural foods" section and appearing throughout the store.
Wegmans' gluten-free cooking classes, offered for years, have recently taken off. "With the increase in awareness and new diagnoses, the last class we had was literally standing room only," Jackson said. "We were bringing in tables and chairs for people -- and they were all newly diagnosed people except for one person."
Natural foods outlets like Feel-Rite stores and the Lexington Co-op have catered to the gluten-free market for years, but Wegmans' investment in the sector has received attention from gluten avoiders.
"People from other parts of the country who don't have a Wegmans serving them are envious of us," said Cliff Hauck, president of the Western New York Gluten Free Diet Support Group. "They've done so much for celiacs -- but even Tops [stores] have a gluten-free section now."
Hauck also cited the success of Vin-Chet, a bakery at 2178 Kensington Ave., Amherst, in developing bread and other baked goods that have become favorites for local gluten avoiders. Gluten-free products tend to be more expensive, because of the ingredients, and Vin-Chet's bread is about $9 a loaf, he said. But to celiacs, it's worth it, Hauck said, for bread that "travels well, and doesn't fall apart when you make a sandwich of it."
It's not just ingredients. At minimum, those items have to be prepared in separate pots or pans, in a separate area that avoids the possibility of contact with anything containing gluten.
Despite the challenges, there's a long list of chain and locally owned restaurants on the WNYGFDSG Web site, at buffaloglutenfree.org.
Gluten appears in foods and products you would not expect, such as licorice, shampoo and lipstick. It is used as a thickener in salad dressing and a filler in processed meats. Soy sauce has gluten, and so does beer. People with gluten problems become label readers who become familiar with gluten's hiding places.
"Anything with wheat, barley or malt is automatically out," said Ross, "but it's the additives and preservatives and thickeners with the strange chemical sounding names that are so hard to figure out. Meanwhile, I discovered that dried mango isn't that bad."
The good news is that much of the damage is reversible, according to medical experts. The key is to get rid of the intestinal inflammation, and the best way is to avoid gluten and its fiery protein.
"It does recover," confirmed Keith, "and you can start feeling better in three to six weeks. The thing about a gluten-free diet is that it's difficult to adhere to. Gluten is pretty ubiquitous in our diet, and to eat gluten-free is expensive. But what is exciting for many of my patients now is that even Walmart has a gluten-free section."
Among restaurants, Curly's and the Pizza Plant restaurants were among the first to take gluten avoiders' needs seriously, Hauck said.
At WNYGFDSG meetings, there's been a "huge increase" in the number of people looking for help, said Hauck. When his wife, Marilyn, was diagnosed with celiac disease about 20 years ago, the Haucks started learning how to talk to restaurant staff about gluten.
>Recognizing the signs
A healthy small intestine is lined with microscopic projections called villi that work to absorb nutrients from food. Celiac disease destroys the villi -- like a lawn mower cutting grass -- so nutrients, including fat, protein, vitamins and minerals, are never absorbed.
Eventually, the decreased absorption of nutrients (malabsorption) can cause vitamin and mineral deficiencies that adversely affect your brain, peripheral nervous system, bones, liver and other organs. This can lead to more illness and may stunt growth in children.
"Any person that has recurring diarrhea or constipation, evidence of malabsorption, unexplained weight loss, persistent or unexplained abdominal bloating, or lactose intolerance needs to think about celiac disease," Keith said.
Many people with Irritable Bowel Syndrome (IBS) may complain of similar symptoms. Keith distinguished the two intestinal disorders: "In IBS, the bowel is more sensitive to normal stimulus, which produces a spasm, not an inflammatory response," she explained. "There's no evidence of damage to the lining. There's no malabsorption."
Similarly, Keith distinguished celiac disease from food allergies: "In an allergic response, the body develops antibodies," Keith said. "Celiac disease is more severe than a food allergy. In and of itself, celiac disease is not fatal, but certain individuals who are predisposed may develop small bowel cancer."
>Tips for gluten-free cooking
1. Learn which grains and starches are safe. Make a list and take it shopping.
2. Refocus your diet on fresh vegetables, fruits and plain meats, without added broths or marinades. Whole eggs and regular (not shredded or low-fat) cheeses are usually safe bets.
3. Read every food label on your shelf, and throw out or segregate unsafe items.
4. If you're cooking food with gluten as well, learn how to avoid contamination in your kitchen. Buy new cookware and utensils as necessary.