Celiac Support Group Improving Quality of Life

The Celiac Support Group at Canton-Potsdam Hospital Hosts Guest Speakers to Improve Quality of Life for Those Living With the Disorder.




Tracy Jarvis
Corporate Communications – 261-5401

December 11, 2012

Celiac Support Group Improving Quality of Life

Canton-Potsdam Hospital's (CPH) celiac disease support group is experiencing increased demand since its inception in 2011.The group was created at the request of community members to provide opportunity for individuals living with the disease to share their experiences, gain education, and promote awareness.

Celiac Disease (CD) is a lifelong digestive disease affecting children and adults. When people with CD eat foods that contain a protein called gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow nutrients to be properly absorbed. Symptoms include abdominal bloating, chronic diarrhea, weight loss, vomiting, and pain, and these symptoms vary among sufferers in their severity. In infants and children, CD can lead to failure to thrive and delayed growth.

Even small amounts of gluten in foods can affect those with CD and cause health problems, such as vitamin deficiency. This can sometimes lead to very serious conditions, such as pellagra, which results from a deficiency of niacin. People who develop pellagra may experience mental confusion, skin discoloration, and chronic inflammation. A positive diagnosis of CD can be confirmed only through a biopsy of the lining of the intestines; blood tests can reveal gluten sensitivity and predisposition to the disease and may indicate a biopsy is needed. The only treatment for CD is removing gluten from the diet.

Gluten is most obviously found in products made with wheat flour, such as pasta and breads. Gluten is also found in rye, spelt, and barley. Most problematic for CD sufferers are "hidden gluten" sources, such as foods, like corn starch, modified through a process that uses gluten, foods made on machinery shared with gluten-containing products, foods distilled through gluten (certain vinegars and soy sauces), and restaurant meals containing marinated meats, such as ribs marinated in beer. Gluten has been found in lipsticks, toothpaste, and envelope glue. People with CD have turned to support groups to help them navigate the dietary changes they must make to minimize symptoms of the disease and avoid further damage to the intestinal tract.

"Participants of the CPH's Celiac Support Group are a pleasure to engage with. Like those of us who work in healthcare, they also want to make a difference and improve the quality of life for others," said Beverly Rascoe, RN and Celiac Support Group Leader. "Friendships are formed that extend far beyond the monthly meeting where they share recipes, samples, and recommendations on what's available within our community," added Rascoe.

Over the past few months, guest speakers have participated in the monthly meetings. CPH Gastroenterologist Xiaosong Song shared information on early detection and genetic testing. Registered Dietician Elizabeth Isenberg discussed CD related to human anatomy and physiology. Robert Kennedy, Store Manager of Potsdam Price Chopper visited multiple meetings with coupons and samples for those in attendance and left with a wish list of recommendations proposed by the group. Potsdam Price Chopper has already set in motion plans to renovate and expand its gluten-free line. There has been discussion about revamping the gluten-free section of Price Chopper stores region-wide.

More and more often, providers are recommending the support group to their patients with confidence; however, community members are invited and encouraged to attend without a referral. The next meeting is scheduled for Monday, December 17th at 7:00 p.m. in the 2nd Floor Classroom on the Hospital's main campus. Beginning in January, 2013, meetings will continue as scheduled every 4th Monday of each month in the classroom location. For more information or to participate in this support group, please contact Beverly Rascoe at (315) 261-5975 or events@cphospital.org.



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