When a patient is diagnosed with Celiac disease, physicians in southeastern Wisconsin often give out Beverly Lieven’s telephone number and e-mail as the primary contact for information about gluten intolerance.
Lieven, who was diagnosed with gluten intolerance 25 years ago, is one of the original members of the Milwaukee Celiac Sprue Crew (MCSC). In her work for the support group, she fields telephone calls and answers questions from those who are recently diagnosed, as well as those who have spent a lifetime dealing with their symptoms.
According to Lieven, Celiac disease is grossly under-diagnosed. What was formerly thought to affect somewhere between one in 2,000 to 5,000 people is now believed to affect as many as one in 100 people, according to a 2003 study.
“It is genetic, and it runs in families,” Lieven says. “If your doctor doesn’t suspect it, the tests are never done. So, creating awareness is essential so that it is on doctors’ minds.”
The symptoms of Celiac disease vary and can only be confirmed through a diagnostic test. It stems from eating gluten, which is found from wheat rye and barley. The disease can produce malnutrition, gastrointestinal distress and autoimmune disorders.
The treatment is always the same – to avoid foods that contain wheat, rye or barley.
“It is manageable by changing one’s diet,” Lieven says. “The money for research hasn’t been there, so it’s kind of like an all-new disease.”
Because so much of our lives revolve around food, it can become socially inhibiting to suffer from Celiac disease, she says.
“I have to worry about it every time I eat,” Lieven adds, “because everything we eat has wheat in it, or wheat added. It can be socially isolating, because it is easier to stay home than to go out and deal with food.”
With a degree in home economics, Lieven has taken it upon herself to learn as much as she can about Celiac disease and its dietary and bodily implications so that she that she can help others who suffer from gluten intolerance.
Lieven is able to easily discuss the realities of dealing with a restrictive diet and offers insight and encouragement that is not always found at the doctor’s office. She also takes time to write a quarterly newsletter that includes recipes, product news and other information that is designed to aid those who follow a gluten free lifestyle.
Lieven has developed a new member packet that provides the basics for those who are recently diagnosed.
When new people call her, Lieven congratulates them upon being diagnosed.
“A lot of people have been sick for so many years,” she says. “Just by changing the food you put in your body, we see sick people become healthy people. The key is getting people diagnosed early. Developing the awareness is absolutely key.”
