(WOMENSENEWS)--Alice Bast was 29 back in 1990 and excited about becoming a mother for a second time.
During the pregnancy she suffered bouts of severe diarrhea, but her doctor said not to worry. The pregnancy went smoothly until two weeks before her due date when she felt the baby had stopped moving. She was soon in the hospital delivering a full-term stillborn girl. It wasn't until after several more miscarriages when she would learn that the whole nightmare could have been prevented if she had followed a gluten-free diet or a diet free of wheat, barley and rye.
The cure seemed so simple, but the disease experts call a "clinical chameleon" was complex. Bast suffered from an autoimmune disorder called celiac disease or celiac sprue. The condition occurs when the body attacks itself after the intestine is exposed to the protein gluten. This exposure can lead to a variety of symptoms both mild and traumatic, from indigestion to severe diarrhea to intrauterine growth retardation, which could affect babies born to untreated mothers, as it did in Bast's case. It also causes mal-absorption of other nutrients, such as iron and calcium, leaving patients, particularly women, vulnerable to other serious chronic conditions like osteoporosis and anemia.
Much is known about celiac disease, which affects twice as many women as men, yet public awareness about this condition is just beginning. All it takes is a simple blood test to diagnose it, but few people are aware of this and few doctors know what to look for to determine if the blood test is necessary. Thanks to more recent studies on the subject and more patients speaking out about it, celiac disease is falling under the national spotlight and what was once an uncommon, often misdiagnosed condition is now being studied for potential cures and even has grocery stores responding to accommodate people requiring gluten-free diets.
"Fourteen years ago my life was dramatically altered," said Bast, who, as a result of her experiences, founded the National Foundation for Celiac Awareness in December 2003. "I became a victim of this debilitating and widespread disease that has been virtually unknown. I had a full-term stillborn child, multiple miscarriages, and a premature child. I was losing weight. I was anemic. I had constant diarrhea. It took me five years and 22 physicians to discover I was suffering from celiac disease."
One out of every 250 Americans has some level of gluten intolerance, according to the National Institute of Diabetes and Digestive and Kidney Diseases, a division of the National Institutes of Health. The condition goes widely under-diagnosed because many physicians don't know how to detect it and its ubiquitous symptoms are often mistaken for other illnesses, such as irritable bowel syndrome.
Everyone has tiny, fingerlike protrusions called villi that line the small intestine and help usher nutrients from food into the bloodstream. In celiac patients, however, gluten triggers a reaction that causes the immune system to attack these villi. When the villi are destroyed, celiac patients lack the ability to absorb critical nutrients.
Patients can be entirely asymptomatic or in more drastic cases, celiac can affect their fertility. There is no known treatment or cure for the condition except one that works 100 percent of the time: completely cutting gluten from the diet, which means cutting out popular carbohydrates, like pasta, bread, and cookies. When individuals with celiac stop eating gluten, the villi in the intestinal tract are able to grow back and function normally.
Of the 8 million Americans living with autoimmune illness, which include not only celiac disease, but also lupus, multiple sclerosis and rheumatoid arthritis, more than three-fourths of those patients are women. Genetics play a role in all of these conditions and celiac is also believed to be a genetic disorder, but the biological mechanics remain unknown.
"The theory is that some genes on chromosome X (the female chromosome) could be responsible," says Dr. Alessio Fasano, co-director of the University of Maryland's Center for Celiac Research in Baltimore. "Or chromosome Y (the male chromosome) might be protective, but nobody knows. Nothing has panned out."
Looking for a Cure
While some scientists hunt for a cause, others are looking for a cure. Fasano said scientists have pinpointed a molecule that plays an active role in celiac. "This molecule is out of control much more than it should be and it makes the gut leaky," he explained. "It's very peculiar."
Fasano is hoping to create a drug that celiac patients could take shortly before eating and the medication would block this molecule from misbehaving. There is also interest in developing a vaccine against gluten, Fasano said, though that research is just getting underway.
Dr. Peter Green, director of the Celiac Disease Center at Columbia University in New York, said there is immense growing interest in finding treatment alternatives to celiac. Following a gluten-free diet is not easy because gluten hides in so many foods, from soy sauce to soup, leaving patients with severely limited food choices, so there is a greater focus on developing new therapies. While more grocery store shelves are featuring gluten-free aisles and a wider array of celiac-friendly products, researchers are exploring another avenue of investigation; creating drugs that would contain enzymes to help celiac patients digest gluten.
"It's a bit like giving someone Lactaid for someone with lactose intolerance," Green explained.
Celiac has many drawbacks to it, but there might be an upside. Green said there's some evidence suggesting women with celiac might have some health benefits, including lower cholesterol, a reduced risk for heart disease and a lowered risk of breast cancer. These perceived links have yet to be studied. "These are just epidemiological observations," Green said.
As women wait for more advanced treatments, scientists continue to unearth more connections between celiac and other conditions. A recent study from Italy published in The American Journal of Gastroenterology found placing a small group of migraine patients on a gluten-free diet either reduced migraine frequency and intensity or wiped out migraines entirely. Why migraines and gluten in the diet could be linked is not yet known.
Despite these gains, Bast said there's still a long way to go. "Research on celiac disease is in its infancy," she said. "There are a few centers focusing on celiac and all are under-funded. Physicians, particularly those on the front line of seeing patients, must understand the need to treat celiac disease to reduce the time to get a correct diagnosis. And the public must become aware of the diverse group of symptoms that can make celiac masquerade as something else."
Katrina Woznicki is a freelance writer based in Edgewater, New Jersey.
For more information:
National Foundation for Celiac Awareness:
University of Maryland Center for Celiac Research:
The Celiac Disease Center at Columbia University: