New Support Group Helps Families With Children Limited To Gluten-Free Diet

A new local chapter of a national support group for parents, families, and friends of children on a gluten-free diet for treatment of celiac disease, gluten intolerance, autism spectrum disorders, ADD/ADHD and allergies has formed for Rockland and Bergen Counties.

Nyack Hospital says it is supporting the local chapter of ROCK — Raising Our Celiac Kids — by hosting the group's meetings at the hospital.

Nationally, 1 in 133 people have celiac disease, including children. With the launch of the Rockland/Bergen chapter of ROCK, families and friends of these children now have a forum to share their experiences and help their kids navigate a gluten-free lifestyle, the only known treatment for celiac, according to Nyack Hospital.

"Left undiagnosed and untreated, celiac disease can lead to autoimmune diseases, nutritional deficiencies, thyroid disease and even cancer," said Linda Suarez, MS, RN, CDE, coordinator of Patient and Community Education at Nyack Hospital. "Living gluten-free is the only known treatment for celiac and education and emotional support play a big role in managing the disease. We are happy to do what we can to help celiac families and children live healthier lives."

The group's mission is to provide a positive environment that embraces the challenges and celebrates the triumphs of living gluten free. ROCK was founded by Danna Korn in 1991 after her son was diagnosed with celiac disease. The group has grown to include chapters throughout the United States and around the world.

Gabrielle Simon, who lives in Bergen County and has a 5-year-old son Ryan who was diagnosed with celiac at the age of 2, is the leader of the new local chapter. For the past three years, Simon has surrounded herself with an informal support network of celiac and non-celiac friends who have helped her navigate the gluten free world and enabled Ryan to thrive and enjoy a symptom-free childhood, according to the hospital.

"While celiac shouldn't define a child, it does affect the way they live each and every day," said Simon. "My hope is that the ROCK group will empower gluten-free children by providing them with the tools, education and support they need to advocate for themselves and their health."

The first Rockland/Bergen R.O.C.K. chapter meeting is set for Tuesday, Sept. 21, from 7 to 9 p.m. at Nyack Hospital, 160 N. Midland Ave., Nyack.

The keynote speaker for the session is scheduled to be Rachel Begun, MS, RD, a gluten-intolerant registered dietitian and author of The Gluten-free RD blog glutenfreerd.wordpress.com. She is expected to lead a discussion on "Post Diagnosis: Keeping it Positive," which will focus on finding the balance between providing children with a healthful, gluten-free diet and allowing them to be kids.

The meeting will conclude with member introductions and a roundtable discussion. To learn more about the Rockland/Bergen ROCK chapter, contact Simon at nynjrockmom@yahoo.com.