Life can be hard enough without having to worry if the next bite you take will have you sick to your stomach. No, we’re not talking food poisoning; we’re talking celiac disease, and it’s an ailment that affects, depending on where you get your statistics, up to 1 in 150 people in the U.S. alone.
That is why a group meets regularly at the Plainview-Old Bethpage Library to discuss this challenging condition.
Celiac disease is a condition where the body has an unfavorable reaction to eating gluten, a substance that is typically found in wheat, barley, rye, and oats; in other words, just about anything you could possibly eat. Celiac damages the small intestine, preventing it from absorbing nutrients while causing a wide variety of symptoms, ranging from gastrointestinal distress, fatigue, pain, mood swings, and more; this makes it difficult at times to diagnose, and in years past celiac was often mistaken for other ailments.
However, symptoms of celiac can be controlled through a strict, regimented diet that excludes all forms of gluten.
Old Bethpage resident Randi Albertelli is the founder of the Long Island chapter of ROCK (Raising Our Celiac Kids), a support group for children who have celiac and their families; while she suffers from celiac herself, Albertelli said that the reality of the disease really hit home for her when her daughter was diagnosed with a particularly severe case of it in 2005.
“My daughter didn’t just present the typical symptoms associated with gastro-intestinal disease…she had emotional issues such as mood swings, she had leg cramps, headaches, along with the gastro-intestinal issues. It ran the gamut and affected her whole body,” she said. “My daughter’s pediatrician caught it early on, so she didn’t have to go through so much, whereas years ago it took years for someone to be properly diagnosed because celiac was not on the typical doctor’s radar.”
Albertelli and her daughter became very active at the Celiac Disease Center at Columbia University in New York City; it was there that she got the help they needed to adjust their lifestyles and acclimate to the new challenges that Celiac presented to them.
ROCK was started in 1991 by a woman named Zanna Korn after her son was diagnosed with celiac; at the time, it was a relatively unknown disease and there were very few dietary choices for those afflicted with it.
Years later, Albertelli was looking to see if there were any groups for those living with celiac; especially children, for whom living with the disease can be especially vexing. Not finding any, she decided to start one of her own. After doing research and discovering ROCK, she contacted the organization and requested to start her own chapter on Long Island; in 2008, that’s exactly what happened, and the benefits to the children of the local celiac community has been tremendous, she said.
“It’s a very informal group…we meet monthly and we share comments, questions, doctor opinions, restaurants, new food items, and what to do in schools,” she said. “A big thing with this group is that we push to have everyone get a 504 plan in their school district; because celiac is recognized by the Americans with Disabilities Act (ADA), any school that receives federal funds must provide its students with gluten-free food options. However, not every school cooperates….I got it done here in Plainview, but they fought me tooth and nail on it. But we’ve all been successful in doing that.”
The Long Island chapter of ROCK is 100 percent free, Albertelli said; there are no membership fees nor any other costs associated with belonging. The group meets once a month at the Plainview-Old Bethpage Public Library, where they share stories, advice, support, and the latest in new products and restaurants that cater to the gluten-free lifestyle.
Camille Ortiz of Ronkonkoma, as well as her two sons, all have celiac disease; she has been an active member of ROCK for three years, and said that the benefits of the group to a parent confronted with a scary diagnosis of an unusual disease are many.
“When you first hear that your child has celiac, there comes a shock; what can he actually eat? What does he have to do to remain healthy?” she said. “Once I found this group, I realized that there were other moms that I could ask questions.”
In addition, Ortiz noted that she is in charge of procuring numerous samples of gluten-free products for other members to test out at their meetings; she looks online to see what companies are offering new items and sends out requests, and the companies in question respond with free samples of anything from chocolate bars and cookies to pasta and bread, which are then made available to ROCK members to try. With celiac’s widened recognition, almost any foodstuff can be found in a gluten-free form, Ortiz said.
Port Washington resident Kristen Smaldon said that three of her four children have celiac disease, and that it was her membership in ROCK that gave her the strength and know-how to deal with guiding them into a healthier, happier lifestyle.
“It’s a nice place to get together with people who are experiencing the same things you are and to be able to feel some normalcy in your life,” she said. “Just knowing that there are other people out there going through what I was…it’s tough at the beginning.”
ROCK holds a series of fundraisers for Columbia University throughout the year; their next one is a “Celiac Awareness Day” on May 26 at the Mets vs. Pirates baseball game at Citi Field, where a portion of every ticket sold through an exclusive online offer is being donated to the Columbia’s Celiac Disease Center. To help out with a good cause, tickets to the game can be purchased at www.mets.com/celiac.
If you’re interested in learning more about ROCK, visit their website at www.rockli.com.
