Celiac mysteries
Diagnosing gluten problems is easier but still tricky
Celeste Kovachi had mysterious symptoms on and off for a dozen years. They included fatigue, heartburn, dizziness, migraines and numbness in her fingers and toes. A new doctor and a new round of blood tests last fall pointed to a gluten problem. A biopsy in December confirmed that eating wheat, barley and rye was causing intestinal inflammation and damage that can result in vitamin deficiencies and trigger various symptoms.
Finally, Kovachi, 47, of East Rochester had a diagnosis for at least some of her symptoms: celiac disease. The treatment is to avoid eating any gluten, even tiny amounts. Safe foods can be contaminated by touching, growing next to or being processed on the same equipment as a forbidden grain.
Defined as a permanent intolerance to gluten, celiac disease is one of the most common and yet most underdiagnosed auto-immune conditions in the United States.
“A lot of people who have symptoms for a long time end up going from doctor to doctor,” says Denise Copelton, assistant professor of sociology at State University College at Brockport. Copelton has been studying celiac disease and how it’s diagnosed.
In several ways the diagnosis has gotten easier. A blood test introduced in 1997 measures levels of certain antibodies that indicate your immune system’s response to gluten in your food. The test is highly accurate, said Dr. Anil Sharma, chief of gastroenterology at Highland Hospital. The test is a first step toward identifying celiac disease. Positive results lead to an endoscopic biopsy to confirm microscopic damage to the villi in the small intestine. Medical practitioners and the public are increasingly aware of how prevalent the disease is. Studies in recent years indicate that about one in 100 or 150 people likely have celiac disease and that symptoms can strike at any age.
“Something we thought was very rare is actually very common,” says Dr. Marilyn Brown, pediatric gastroenterologist at Golisano Children’s Hospital at Strong, who has personally diagnosed about 25 cases in the past year.
But challenges remain. Symptoms vary widely, from diarrhea and bloating to changes affecting the skin, joints, teeth, nervous system, energy level and mood. Some symptoms mimic other conditions such as irritable bowel syndrome. Not all clinicians look for it, especially if incorrectly taught years ago that celiac disease is rare and mostly a short-term childhood issue.
Another tricky part to getting diagnosed: Some people with symptoms try giving up all gluten before a formal diagnosis. Doctors maintain that patients shouldn’t cut regular bread, cookies, bagels and more out of their diet until they get a medical diagnosis. Someone who’s gone gluten-free would have to resume eating the problem grains — four or five slices of wheat bread a day for two to four weeks — before a blood test and biopsy would detect the condition, says Sharma. An official diagnosis is helpful so your doctors won’t look for other things.
People with celiac disease are at higher risk for other auto-immune diseases such as rheumatoid arthritis, diabetes and thyroid disease and at higher risk for lymphomas and gastrointestinal cancers, Sharma says. Also, if you’re diagnosed with celiac disease, your siblings and parents have a one in 20 chance of also having celiac disease, so they should be tested.
Many generic drugs contain gluten, but an insurer likely won’t pay for higher-priced gluten-free versions if your medical record doesn’t include a diagnosis of celiac disease, Brown says.
Other tests have limited or unproven value for diagnosing celiac disease. National Institutes of Health guidelines mention genetic testing only to rule out celiac disease in some patients. Stool antibody testing, offered by mail but not in New York, hasn’t been scientifically proven effective.
Several local patients say it was a relief to be diagnosed accurately and that the diet is manageable once they learn to avoid less-obvious sources of gluten, such as malt flavoring.
The diet has gotten easier since additional gluten-free foods are available, such as baking mixes, although they are more expensive. Labeling laws require anything with wheat to be clearly labeled. Some local eateries have gluten-free pizza and baked goods.
Phyllis Kravetz of Perinton, diagnosed in 2007, typically brings her own salad dressing, steak sauce and mustard to restaurants because she knows her bottles are gluten-free and haven’t been contaminated by touching croutons or a roll. To anyone with undiagnosed symptoms, she says to keep working with clinicians to get to the bottom of it. “You know your own body,” she says.
CSWINGLE@DemocratandChronicle.com
Gluten is common
Among the processed foods that could contain wheat, barley or rye: bouillon cubes, brown rice syrup, candy, chips/potato chips, cold cuts, hot dogs, salami, sausage, communion wafers, french fries, gravy, imitation fish, matzo, rice mixes, sauces, seasoned tortilla chips, self-basting turkey, soups, soy sauce and vegetables in sauce, according to the American Dietetic Association. Most of these foods can be found gluten-free.
To learn more
Rochester Celiac Support Group meets the third Wednesday of each month at 7 p.m. in the Fellowship Hall at Brighton Reformed Church, 805 Blossom Road. Newcomer orientation starts at 6:30 p.m. The sessions are free. Extensive information is also online at www.rochesterceliacs.org.
