By Jan Chait
TERRE HAUTE — The cheese pizza was the last straw, resulting in gastrointestinal pain so severe it sent Sarah Gatrell to the doctor.
“It felt like having a baby, the pain was that bad,” said Gatrell, who is the mother of three children, ages 3, 7 and 10.
Looks like lactose intolerance, the doctor said, and advised her to avoid all dairy products.
Despite eliminating dairy products from her diet, however, the symptoms persisted. As later determined by a gastroenterologist, it wasn’t the cheese that caused the adverse effects – it was the crust. Gatrell has celiac disease, which is a permanent intolerance to the gluten found in wheat, barley and rye and, perhaps, oatmeal.
Gluten, a mixture of proteins that are not soluble in water, gives bread dough its elasticity, allows leavening and provides the chewiness found in baked products such as bagels.
In the United States, according to the Juvenile Diabetes Research Foundation, one in 100 people in the general population and one in 10 people who have Type 1 diabetes have the lifelong disease.
Taking just the one-in-100 estimate for Vigo and the surrounding counties in Indiana and Illinois, nearly 2,500 people have celiac disease.
Because there are no typical signs and symptoms of celiac disease, and because it can mimic other diseases, only about 125 people have been diagnosed.
When a person with celiac disease ingests gluten, the small, finger-like projections in the small intestine called villi are damaged or destroyed, according to the American Celiac Disease Alliance. According to the ACDA, the resulting inflammation and atrophy results in the malabsorption of critical vitamins, minerals and calories.
Villi, which protrude from the lining of the small intestine, help increase the surface area. That allows nutrients to be absorbed at a fast rate. When the villi are flattened and damaged, the body cannot absorb all of the nutrients in food. It’s like pouring water on either a carpet or on a tile floor: Water is absorbed into the carpet, but not into the tile.
“All of my villi were flat,” Gatrell said.
Celiac isn’t a widely known disease.
“I’d never heard of it before I was diagnosed with it,” Gatrell said. Because it is relatively unknown, because it often has no symptoms, and because it can mimic other conditions, doctors may not think to check for it.
Diagnosis may begin with a blood test that can detect high levels of antibodies. That initial test detects people who are likely to have celiac and need further testing, according to the Mayo Clinic. Confirmation may involve microscopically examining a small portion of intestinal tissue to check for damage to the villi. People are advised not to put themselves on a gluten-free diet before diagnosis is confirmed, as that may change the results of the tests.
Untreated celiac can result in malnutrition, loss of calcium and bone density, lactose intolerance (which may resolve itself with treatment for celiac), cancer — especially intestinal lymphoma (a cancer that involves cells of the immune system) and bowel cancer — and disorders of the nervous system, including epilepsy and nerve damage.
There is only one treatment for celiac, which is to avoid eating foods that contain gluten.
It is more than just eliminating bread and pasta from your diet: gluten is found in an estimated 90 percent of processed food and can “hide” in foods you may not think contains gluten. Because of additives, for example, McDonald’s grilled chicken contains gluten.
Gatrell doesn’t like the word “diet” when it pertains to celiac.
“It’s a lifestyle. A diet is something you can get off of,” Gatrell said, adding that she originally thought that after following a gluten-free lifestyle for a while, it would go away.
Wrong. She must remain gluten-free for the rest of her life. She recently had to pick and choose her way through a wedding meal. She couldn’t eat her daughter’s birthday cake last Sunday. (“I eat a lot of frosting,” she said.)
As a teacher at North Vigo High School, she can only gaze at the doughnuts and cookies provided at faculty meetings.
“It takes away the joy of eating,” she said. If a food has gluten in it, “I can’t have it; I can’t even taste it.”
There is a “safe” amount of gluten that can be eaten in a day: the amount that’s in 1/100th of a slice of wheat bread.
It also adds time to the busy working mother’s grocery shopping: 90 percent of processed foods contain gluten, but she must try to weed out that 10 percent that her body can tolerate. She describes the frustration of standing in the grocery story aisle with an endless variety of cereals stretching seemingly into the horizon and “having to pick out that one box that says ‘gluten-free’ on it.”
“I miss convenience food, of just being able to go and say ‘I think I’ll have …’ I miss being able to not think about it,” Gatrell said.
On top of the food restrictions, she has to be careful about cosmetics and prescription and over-the-counter drugs, which can also contain gluten. If she handles Play-Doh, she has to make sure to wash her hands. While gluten doesn’t absorb through the skin, she could be exposed to it if her hands touch her mouth.
Cross-contamination is another consideration. A knife used to spread peanut butter on her children’s sandwiches can leave trace amounts of gluten in the jar. She can’t toast her gluten-free bread in the same toaster used for regular bread.
“So many things have gluten; it’s so easy to cross-contaminate,” she said.
Gatrell is working out some recipes to make them gluten-free, such as using gluten-free bread crumbs in her meatloaf, and she’s found a gluten-free recipe for lasagna.
And there is help to learn about remaining gluten-free.
Because celiac is much more prevalent among people with diabetes, particularly Type 1, Tracy Arini, a registered dietitian and certified diabetes education at Union Hospital Diabetes Education Center at 1530 N. Seventh St., has expertise in aiding people with the disease.
She provides them with information that includes grains and ingredients to avoid, overlooked sources of gluten and its derivatives, gluten-free foods (what she calls the “safe” list), recipes for gluten-free flour substitutes, how to add fiber in a gluten-free diet, and menu ideas.
If you have a first-degree relative (parents, siblings or children) with celiac, you have up to a 15 percent chance of having it, too. If you have diabetes or if you have an auto-immune disease (such as rheumatoid arthritis, lupus or autoimmune thyroid disease), you are at higher risk than the general population. People of European descent are also more likely to have celiac than other ethnic groups.
If you suspect you may have celiac, ask your doctor to test you for it. If you are diagnosed with celiac, ask to be referred to a dietitian who specializes in it.
Help with finding gluten in your foods is getting easier in the United States, thanks to a requirement that food manufacturers list the top eight food allergens, which includes wheat, on food labels, according to the ACDA. And the U.S. Food and Drug Administration is currently reviewing comments to develop and finalize rules to use “gluten-free” on product labels.
Food manufacturers are also learning that including “gluten-free” on a label is helpful to consumers who must avoid the substance. Blue Bunny, which had a booth at a meeting of the American Association of Diabetes Educators in August said its new labels should be visible this spring. Except for its Drumsticks and ice cream sandwiches, Blue Bunny’s ice cream bars and frozen pops are gluten-free.
