by Christopher Boyle
LONG ISLAND, NY – For people suffering with Celiac disease, even something that most people take for granted – say, stopping out for a quick bite to eat – can become an endeavor in supreme aggravation and potential sickness if you’re not careful. Combing through a menu designed to cater to the so-called “normal” people and making special requests of the kitchen can get old very quickly, but such is life if you’re the 1 in 150 people in the country who have extreme gluten sensitivity.
Celiac disease is a long-term autoimmune disorder that primarily affects the small intestine. Classic symptoms include gastrointestinal problems such as chronic diarrhea, abdominal distention, malabsorption, loss of appetite and among children failure to grow normally. Celiac disease is caused by a genetically predisposed reaction to gluten, which are various proteins found in wheat and in other grains such as barley and rye. It is a condition that is triggered by a vast array of commonly-found foods in modern society, and affects the absorption of nutrients, frequently leading to anemia.
Celiac symptoms, while often debilitating, can be mitigated via a stringent diet that eliminates gluten entirely; in recent years, numerous food manufacturers have put more and more gluten-free foods on the market in order to assist Celiac sufferers. Oddly enough, some people not suffering from Celiac have latched onto these foods as a new diet fad, despite that fact that studies do not indicate any special benefit whatsoever derived from eating gluten-free foods by those not afflicted with Celiac disease.
ROCK (Raising Our Celiac Kids) is a support group for children who have Celiac disease; ROCK Long Island chapter founder Randi Albertelli suffers from Celiac herself, but it wasn’t until her own daughter received the same diagnosis that she truly began to take the ailment seriously.
“My daughter not only suffered from the typical gastro-intestinal symptoms of Celiac…she had emotional issues such as mood swings, and physical issues including leg cramps, headaches, and more. It her whole body,” she said. “Due to the increased awareness of Celiac disease in recent years, my daughter’s doctor caught it early on in her life…in contrast, it used to take much longer for someone to be properly diagnosed because Celiac was not on the typical doctor’s radar.”
Both Albertelli and her daughter visited the Celiac Disease Center at Colombia University in Manhattan; it was there that they received that assistance they needed in order to formulate the proper diet and lifestyles needed in order to bring their ailments under control and enjoy a relatively normal lifestyle once again.
ROCK was first founded in 1991 by Zanna Korn, a woman whose son was diagnosed with the then-uncommonly known disease. After conducting ample research into Celiac – with a special focus on dietary options – and penning several books on the subject, Korn began ROCK as a way to help others in the same boat. Slowly but surely, chapters sprung up around the United States as awareness of the disease grew and a need for information was great.
Albertelli, fruitlessly looking for support for both herself and her daughter, realized the need for a local chapter of an organization such as ROCK, and as a result, founded her own in 2008 after corresponding with the organization. Since then, Long Island now has a support group that those – especially children – suffering from Celiac disease can turn to for support, advice, information, and more.
“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 proper eating plan in their school district. Celiac is recognized by the Americans with Disabilities Act, and any school that receives federal funds must provide its students with gluten-free food options. However, not every school does that.”
Membership to ROCK does not cost anything, and the group meets monthly at the Plainview-Old Bethpage Public Library, where they offer support and information on the newest products and restaurants that adhere to the gluten-free lifestyle. Members will often bring samples of gluten food products for others to try out as well.
“People with Celiac disease can life a very normal life as long as they’re careful, and as long as there’s awareness out there,” Albertelli said. “In recent years that awareness has been growing, and we’re working hard to grow it even further.”