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Dealing With a "New Normal"

As seen in South Jersey Magazine, Volume 4, Issue 7

Author: Bernadette Finnerty; photo by Mike Wylot
 

As seen in South Jersey Magazine, Volume 4, Issue 7

Experiencing life with a daughter who has diabetes and celiac disease, a Cherry Hill mom’s motivation is felt region-wide.

Donna Bell breezes into the Starbucks on Main Street in Moorestown. Tall and trim, she’s neatly dressed in a white t-shirt and khaki shorts. She quickly checks her phone, smiles and shakes my hand. She’s waiting for confirmation that her daughter, Evey, has eaten her 7:30 meal and she wants to know her glucose reading. The phone rings. It’s a text message. “She’s 150. Good.”

The message may have been from her husband, Rick, or from one of her three other kids, to let her know Evey is okay. At this point, the whole family is involved in every bite four-year-old Evey puts into her mouth, how many carbohydrates she consumes, and how much energy she’s expending. It’s all part of the complicated balance of nutrition and medicine that little Evey requires all day. Every day. Phone calls and text messages help Bell stay in constant contact on the rare occasion, like during our interview, that she’s not with Evey.

The youngest of the Bell’s four children, Evey was diagnosed in February 2006 with Celiac Disease, an autoimmune deficiency that prevents her body from absorbing the nutrients from food. It’s triggered by the consumption of gluten, which is found in wheat, barley and rye. Even worse, she was diagnosed in September 2006 with Type I (insulin dependent) Diabetes. The combination of the two diseases makes life difficult, to say the least. “So many gluten-free foods are high in carbohydrates, which send her glucose through the roof,” says Bell. “So we have to count every carbohydrate she consumes and monitor her glucose constantly to make sure she’s getting the right amount of insulin.” When Evey was diagnosed with Celiac, the Bells had never even heard of it. Prior to that, she had seen at least four specialists for various health issues, including severe allergies, swollen adenoids and possible acid reflux, before a gastroenterologist correctly diagnosed her.

The only treatment for Celiac is cutting out any foods that contain gluten. According to the National Foundation for Celiac Awareness, roughly one in 133 Americans have Celiac, but 97 percent remain undiagnosed. Because so many of the symptoms of Celiac mimic symptoms of other maladies, it’s hard to pinpoint and is often overlooked. In addition to being overwhelmed by the reality that her daughter’s diet would change forever, Bell was shocked to learn that she, too, has Celiac Disease and that it had gone undiagnosed for years. Bell had been getting her blood drawn and tested every three months and was taking iron supplements for anemia. The same doctor who diagnosed Evey suggested Bell get tested for Celiac, too.

She learned that her anemia was the result of Celiac, which was preventing her body from absorbing iron. Bell’s frequent bouts of exhaustion and bloating after meals were classic symptoms of the disease, but she just assumed the bloating was normal, and that her exhaustion was caused by having an active, and sometimes hectic, life with four kids and a dog. But when Bell learned that women with Celiac are sometimes unable to carry a baby to full term, the information really hit home. Bell had delivered a stillborn baby, Darby, in 2000. Despite the family’s grief over the baby, at least it provided some explanation.

Once she learned about Celiac, Bell kicked into high gear. She emptied her cupboards of any foods that contained gluten—not easy for a family of six. But Bell says her husband and three older children—Ashley (age 17), Janey (age 12) and Riley (age 10)—pulled together and all agreed to live gluten-free at home for the sake of their mother and baby sister. So the Bells were able to eliminate the possibility that Evey and Donna’s food could accidentally be crossed with a gluten-containing product. Bell thought she had the problem under control. Then Evey was diagnosed with Diabetes.

“I had every book on Celiac disease. It was under control,” says Bell, who had done enough research to know that there were other auto-immune diseases associated with it, like Diabetes and some Thyroid disorders. When Evey started complaining of excessive thirst and urinating frequently, Bell knew she had Diabetes, too. She brought Evey to the doctor and explained everything she had learned about the connections between Celiac and Diabetes. “I had to convince them that I wasn’t just a neurotic mom,” she says. “I really did know a lot about this. I was frantic.” Bell’s fears were confirmed when the tests confirmed the diagnosis. Then things got really complicated.

Since Celiac and Diabetes are both autoimmune diseases, it’s not uncommon for someone to have both. But that doesn’t make it any easier to handle.

Donna Bell’s mission is to change that.

Soon after the double diagnosis, Bell says, she attended a support group for diabetes. She was given a long list of foods that diabetics can eat, but most of them had gluten. “There was no information on nutrition for Celiacs with Diabetes,” she says. She encountered the same thing in Celiac support groups. Most gluten-free foods are high in carbohydrates. Bell says she would wander around the supermarket in tears, reading labels and counting carbohydrates, trying to figure out what to feed her daughter. “It was so frustrating,” she recalls. “I felt like there was nowhere to turn.” There was an abundance of information on Celiac and Diabetes individually, but none of it was specific enough to help her deal with both.

Unable to find a support group to help with her specific set of circumstances, she decided to start one. The nurse at Evey’s preschool put her in touch with another family who was dealing with the same problem. From there, Bell found a few more families and called each one. Like her, the other families were also struggling, and eager to connect. Currently the group has eight families, who meet once a month. Bell often invites a dietician or diabetes educator to join them. “Most of all,” says Bell, “we talk about everyday issues and share recipes or products that are gluten free and low in carbs. “Recently, one of our discussions focused on handling teenagers who don’t want to take their insulin, or who will eat a regular slice of pizza with friends because they don’t want to be different. It’s really hard for them, and they’re tempted to cheat. With small children, the parent is in complete control,” she says. “But once they’re teenagers, you have to put that responsibility on them. It’s so hard to do that to your child. And sometimes they’re still so young.”

The group’s last meeting was a family pool party at the Bells’ Cherry Hill home. “It was so nice, for all of us, to be at a party and not have to explain the food, or the glucose readings, or the insulin shots and pumps. Everyone there had the same issues,” she says, “so it wasn’t an issue. The kids just had fun. It was so nice.”

To date, the group’s most important goal is to raise money for the Juvenile Diabetes Research Foundation (JDRF), in the hopes that they’ll find a cure for Diabetes. Through JDRF, she hopes to raise awareness of Celiac Disease. The group started “Team Celiac” and plans to walk as a group in the JDRF Walkathon, which will be held October 28 at Cooper River Park. Bell sent a mass email to friends, family and everyone she could think of. The email was a letter from Evey, explaining her health issues, and asking for help. Bell thought it would be hard to resist a letter directly from Evey, whom she calls her family’s “little hero.” With a crop of bright red hair and a sweet smile, Evey is a spunky child, who endures all of this with grace. “She never complains,” says Bell. “She even knows how to do her own glucose tests and can read the numbers to me. We’re inspired by her ability to deal with all of this at such a young age.”

Bell’s dedication to finding a cure for Diabetes and creating awareness for Celiac is first and foremost for Evey’s benefit. “I want people to know about Celiac so that when Evey gets older and has to take responsibility for her own nutritional needs, it won’t be so hard for her. I don’t want people to give her that blank stare when she asks a waiter or waitress if there are any gluten-free items on a restaurant menu,” Bell explains. “I also want to help people who are going through this. I want them to know there are foods you can eat that taste good. I want to help prevent other people from standing in the supermarket, bewildered and crying like I was.”

Bell says she’s helped several people find recipes and brands. She’s helped people learn to count carbohydrates and find restaurants that understand the disease. One such restaurant is Pasta Pomodoro in the Eagle Plaza Shopping Center in Voorhees. “Someone told me they had a GLUTEN FREE sign on their door. So one night, I piled the kids into the car and drove over there to check it out.”

It turns out the owners, Skip Elmer and Pasquale Masters, both have personal reasons for cooking gluten-free. Elmer suffers from Celiac and Diabetes, and Masters’ son has a wheat allergy. Masters, who is also the chef, had always wanted to create a gluten-free menu, but says he didn’t know if anyone would be interested. Donna Bell changed his mind. With Bell’s encouragement, and encouragement from other customers with Celiac, Masters created a complete gluten-free menu that is totally separate from the restaurant’s regular menu. He adds, though, that 80 percent of his regular menu can be prepared without gluten. Through their gluten-free menu, Pasta Pomodoro has become a highly regarded supporter of Team Celiac. In fact, Masters was the first place winner of the National Foundation for Celiac Awareness (NFCA) Gluten Free Cooking Spree Contest in Philadelphia. And, during the months of September and October, $1 of every gluten-free meal sold at the restaurant will be donated to Team Celiac.

All of this gives Bell a sense of accomplishment. It makes her feel that everything she’s gone through has helped push the cause a little further. “This is our new normal. When I look at it that way, it doesn’t seem so difficult. I’m just hoping that by the time Evey has to learn to take care of herself, that it will be more ‘normal’.”

Do you have a story of inspiration to share with us? If you know someone who has inspired you, or had a life-changing experience that will inspire others, please write to us at edit@southjersey.com. We’d love to consider their story for a future edition.

What is Celiac?

When people with celiac disease eat foods containing gluten, their immune system responds by damaging the fingerlike villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream. This can lead to malnourishment.

Researchers have determined that Celiac Disease is a genetic condition, meaning that it is inherited. In some cases, Celiac becomes active or is triggered by events such as surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

Undiagnosed or left untreated, Celiac Disease can lead to other medical problems, such as other autoimmune diseases, osteoporosis, thyroid disease, cancer, diabetes Type 1, and reproductive health issues.

Source: National Foundation for Celiac Awareness

Juvenile Diabetes Research Foundation (JDRF) – South Jersey Chapter
1415 Route 70 East, Suite 502
Cherry Hill, NJ 08034
(856) 429-1101 • (856) 429-1105
southjersey@jdrf.org
www.jdrf.org/southjersey *to support Evey specifically, click on Walk and search for Evey Bell.

National Foundation for Celiac Awareness (NFCA)
P.O. Box 544
Ambler, PA 19002-0544
(215) 325-1306
info@beyondceliac.org
www.beyondceliac.org

Team Celiac
C/o Donna Bell
6 Middle Acre Lane
Cherry Hill, NJ 08003
(856) 354-8642
donna@bellmanor.com

Pasta Pomodoro
Eagle Plaza – Rt. 561
Voorhees, NJ 08043
(856) 782-7430
www.pastapomodoronj.com

Published (and copyrighted) in South Jersey Magazine, October 2007.

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