Thursday, March 29, 2012

Attitudes about celiac disease study, Part 2


The second part of the National Foundation for Celiac Awareness study of how family members perceive celiac disease is now underway.

Family members who have not been tested for celiac disease can fill out the survey until Monday, April 9.

All survey participants* will be entered to win a gluten-free prize pack from the USA Rice Federation and Zatarain’s. Up for grabs are:
  • USA Rice and Zatarain's logosOne Digital Aroma Rice Cooker from the USA Rice Federation, a $120 value.
  • An assortment of gluten-free products from Zatarain’s, a $30 value. Mixes include: The Jambalaya and Dirty Rice varieties, plus Spanish Rice, Long Grain and Wild Rice, Yellow Rice, Garden Vegetable Rice, Rice Pudding and more!

The issue of getting tested for celiac disease can be tricky for a family. Once someone has been medically diagnosed, doctors recommend that close relatives also be tested even if they don't have any symptoms.

Close is defined as first-degree relatives -- sibling, parent or offspring  and second-degree -- grandparent, aunt, uncle or grandchild.

But many family members are reluctant. Now researchers from NFCA and Beth Deaconess Medical Center in Boston are looking into the attitudes and perceptions these un-tested, at-risk family members have about celiac disease.

To be eligible participants must:

  • Be 21 years or older
  • Speak fluent English
  • Have a biological relative (parent, sibling, child, aunt, uncle, grandparent, niece, nephew, cousin or half-sibling) who has been diagnosed with celiac disease
  • NOT have been tested for celiac disease
The survey is a 36-item questionnaire that takes between 10-15 minutes to complete.

If you are not eligible to take the survey, do you know of someone who is?
To refer someone potentially eligible to take the survey, please email the researcher at claudia_dolphin@emerson.eduMake sure to include an email address where you or your referral can be reached.

1 comment:

T said...

My son was diagnosed with Celiac a year ago. My husband and I were both tested (DR. thought it funny we wanted to be tested) both negative results. A tad baffled about how that can be? Same with my sons food allergies - we don't have them.??