It took years for Rosemarie (Savokinas) Butera’s doctors to pinpoint why she was so sick, and getting worse. She sought countless physicians, but was never given a definitive diagnosis.
Twenty years ago, after visiting a Kingston-based physician, Tom Castellano, Rosemarie’s sickness suddenly went silent. She was healthy for the first time in years.
Rosemarie, now 84, was featured in the July 13, 2003 edition of the Sunday Dispatch’s “Spotlight” for overcoming that adversity following her diagnosis with celiac disease.
Celiac disease is a chronic inflammation of the upper portion of the small intestine as a response to gluten-based proteins found in whey, wheat, rye and barley.
“He saved my life,” she said of Dr. Castellano. “I had to be responsible and it was difficult at first. It’s easy today. It was so difficult back then because we had to look at every little thing.”
According to the Celiac Support Association, more than 3 million people in the U.S. may have the disease, but only 150,000 have been diagnosed. Celiac disease is the most common genetic autoimmune disease in the world, more common than lupus, rheumatoid arthritis, multiple sclerosis, epilepsy, Parkinson’s disease, Crohn’s disease or cyctic fibrosis.
Since Rosemarie’s diagnosis, she’s been fighting to raise awareness for the disease.
Fighting back through support
In August of 2001, Rosemarie, along with Patty Kupetz, Carole Paxton and Ben Franklin, formed a local chapter of the Celiac Sprue Association, USA, Inc. (recently the word “Sprue” has been changed to “Support”). The Greater Wilkes-Barre/Scranton Celiac Disease Support Group helps those with Celiac disease learn about a gluten-free diet and how to fight for better explanation on food labels.
From four members in 2001, the chapter had 40 members in 2003 and is currently operating with 35 members. Rosemarie is the chairperson of the support group, which meets monthly. Members share gluten-free recipes and occassionally offers food that is donated to the group.
The main celiac group is in Nebraska, called Celiac Support Association, which has nearly 100 organizations across the United States.
“We help each other out,” Rosemarie said. “Everyone is there to learn something and help.”
Maintaining a gluten-free diet
There’s no cure for celiac disease, but proper diet will alleviate symptoms.
According to a study done by the NPD Group/Dieting Monitor in 2013, 30 percent of American adults are interested in avoiding in cutting down or avoiding gluten in their diets. It’s harder than one may think, Rosemarie said.
“The doctors first sent me to a dietician,” she said. “They were telling me Corn Flakes and Rice Crispies are gluten-free. They aren’t; they have malt in them, which is a gluten.”
At first, Rosemarie found it difficult to stay away from gluten products. She had to do her research. But now, she said, times have changed and food labels have become more helpful. Companies are now catering to gluten-free diets.
When the first story on Rosemarie’s journey was published in 2003, she stated that the only restaurant that provided a gluten-free menu was Outback Steakhouse at the Arena Hub Plaza. In 2016, almost any restaurant can cater to the needs of a gluten-free diet, she said.
“It’s an expensive diet,” Rosemarie said. “You can buy meats, but they can’t be marinated. Turkey is naturally gluten-free. But if they inject something in them, that’s not good.”
Recently, she visited Fox Hill Country Club and had gluten-free pasta with vodka sauce, which she said was very good.
“You have to look out for yourself,” she said. “You have a mouth, use it. Why give up an enjoyable experience? I am very super sensitive when it comes to eating out, but I enjoy it.”
Difficult hill to climb
No one could ever figure out what was wrong with Rosemarie.
Rosemarie always knew there was an issue with her health, whether it had something to do with gluten or not. She is the oldest of 51 grandchildren and she grew up with anemia. She had her gallbladder removed in 1989 and developed severe symptoms, which included chronic abdominal pain. For years, nothing completely eased the pain.
Rosemarie was offered medication in 1990 to “control anxiety” but she threw the pills away because she knew the diagnosis was incorrect.
In 1995, Rosemarie was in a serious car accident, and developed the chronic pain once again. She continued to fight to find out what the issue was. That’s when she found Dr. Castellano.
Dr. Castellano ordered a test to look for three antibodies present when exposed to gluten. The doctor was able to confirm those three antibodies — anti-gliadin, anti-endomysial and anti-tissue transglutaminase — were present. Therefore, Rosemarie was celiac and her diet needed to change immediately.
Rosemarie still keeps a busy lifestyle. She is a real estate agent for Lewith and Freeman Real Estate and chairs the support group. She’s also a member of the Greater Pittston Historical Society and the Friends of the Pittston Memorial Library.
Her son, Leonard, lives with her in Jenkins Township, while her other son, Joseph, lives with his wife Dianna in Avoca. She graduated from Pittston High School in 1949 and was married to her husband Jasper for nearly 60 years. Jasper passed away in 2013.
In November, Rosemarie and the support group will have a stand at the Pittston Memorial Library Health Fair.
Anyone interested in learning more about the Greater Wilkes-Barre/Scranton Celiac Disease Support Group can find more information at celiacs.org or contact Rosemarie at 570-655-0728. The next meeting of the group will be on Sunday, June 26 at the Bear Creek Inn on Route 115.
Reach Nick Wagner at 570-991-6406 or on Twitter @Dispatch_Nick