Searching for Answers: Celiac and Gluten Sensitivities
Counting the Cost
One question Williamson had about the genetic test was the price. She worried the test would be prohibitively expensive.
“There’s a perception out there that genetic testing costs a lot,” says Carol Shilson, executive director of the University of Chicago Celiac Disease Center. “The methodology used to be much pricier than it is today. Newer technologies have made it less expensive.”
Depending on the lab, the cost can range from $350 to $800. A significant variable is how in-depth the testing is.
“It’s really important that the lab look for the half heterodimer on the DQ2 gene,” says Shilson. The DQ2 gene can be divided into two components, called alpha (DQA1*05) and beta (DQB1*02) subunits. Not all labs look for both parts.
According to the National Institute of Health’s Human Genome Project, more than 1,000 genetic tests are available today. Shilson recommends selecting a lab that specializes in celiac disease.
“There are huge labs out there running hundreds of genetic tests but they don’t necessarily know the specifics of celiac genetics,” she says. “We’ve seen patients use labs that offer the genetic test for celiac and sometimes the labs are not using accepted science or they outsource the testing. In these kinds of cases, we’ve seen results reported incorrectly.”
Importantly, labs that specialize in celiac genetics are more likely to stay current with the latest research and technology specific to the disease. While DQ2 and DQ8 remain the most important genes for the genetic test, recently nine other genes associated with celiac disease were discovered, as reported at the 2009 International Celiac Disease Symposium held in Amsterdam in April 2009.
Abby’s genetic test cost approximately $500. With preauthorization from the doctor’s office, insurance covered most of the cost. “A welcome surprise,” Williamson says.
While a genetic test need never be repeated (genetic information doesn’t change), the cost can be high if many family members are to be tested. To assist with this, some labs offer discounts for multiple orders.
Next: Confidentiality Concerns