Shedding light on celiac disease // NorthJersey.com: Shedding light on celiac disease

Shedding light on celiac disease
Tuesday, December 1, 2009
BY KATHRYN DAVIS

When Einat Mazor’s daughter was 3 years old, she was small for her age. By the age of 4, she was in the fifth percentile of size range for her age. At each doctor’s visit, the worried mother voiced concern, but the pediatrician assured her Edan was fine. By the time her daughter was 6, Mazor no longer trusted her daughter’s doctor and asked to be referred to a specialist. That was the turning point for her family. An endocrinologist diagnosed her daughter with celiac disease.

Celiac disease is often a mystery largely unrecognized by many physicians. Because of Mazor’s tenacity, her little girl’s condition was identified and she was able to receive the care she needed.

"Celiac is a genetic disorder that is autoimmune in nature," explains Cynthia Kupper, R.D., executive director of the Gluten Intolerance Group of North America, a patient support organization. "The prevalence of celiac in the United States is considered to be about 1 in 133. The actual diagnosis rate is about 40 percent of that number."

Symptoms vary. Some children, like Edan Mazor, may experience delayed growth. There can also be a delay in the onset of puberty or failure to thrive as infants. In adults and older children, the many possible symptoms include flatulence, unexplained weight gain/loss, infertility, irritability or depression, and bone or joint pain.


Autoimmune disorder

Celiac disease is not a food allergy. Food allergies, such as a wheat allergy, can be outgrown. Celiac is an autoimmune disease. There is no medication for celiac, no cure; the only treatment is dietary – the complete avoidance of all forms of gluten. Gluten is the common name for the proteins found in all forms of wheat and related grains. When someone with celiac eats food containing gluten, even in small amounts, the reaction causes damage to the small intestine, even without symptoms.

"There are three necessary components to celiac," explains Kupper. "You need to carry the gene that predisposes you to the disease. You need exposure to the gluten, and you need a trigger mechanism. Right now we don’t really know what that trigger might be, but once it’s triggered into action, it doesn’t go away."

When Mazor discovered that her daughter had celiac, it was an adjustment for the whole family. But it also empowered them.

"Edan was old enough to understand. She realized that in order for her to grow and be like anyone else, she needed to change her diet," says Mazor. "Once we changed her diet, in six months we totally saw a change. It was wonderful. Now she can say she is like anyone else."

"Sometimes patients can have almost no symptoms at all and still have celiac disease," notes Dr. Wendy Jeshion, co-chief of the Division of Pediatric Gastroenterology and Nutrition at Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center. She explains that there is a broad range of symptoms, which can be very mild. "Patients don’t need to have all of the symptoms. They can have isolated symptoms, like joint complaints, fatigue, anemia, diarrhea, vomiting, isolated abdominal pain, or dental enamel defects. There are more manifestations of the disease than just gastrointestinal."

Jeshion sees a wide range of symptoms in her patients. "We have all ages. Children that come in at age 1 1/2 to 4 may have delayed growth. Older children may have an isolated symptom, such as anemia. Very often I find that a parent or grandparent has it as well."

According to the Celiac Disease Foundation, celiac disease occurs in up to 15 percent of children and siblings of someone with celiac.The foundation urges testing for family members, noting that anyone with an autoimmune disease has a 25 percent higher risk.

Jeshion speaks at hospitals around the country about celiac disease. "Some disorders can place patients at increased risk of developing celiac disease and they should be screened," she says. "Some of these disorders include Down syndrome, Type 1 diabetes, thyroid disease, rheumatologic disorders and Turner syndrome."

Diagnosis is a two-step process. "We use a combination of serologic markers and blood tests to screen patients," says Jeshion. "If that’s positive, they need to get an endoscopy."

Sometimes parents suspect celiac and try removing gluten from their child’s diet. Jeshion warns against that. "I lecture all over the country about the importance of not making any dietary changes until an evaluation is made by a physician. Otherwise, we can get a false negative result."

Edan Mazor’s diagnosis has meant changes for the family. While the disease has not prevented participation in normal childhood activities, it does require planning. For parties and other social activities, her mother says, "I talk ahead of time with parents to be sure she can have foods. Basically we try to give her as normal a lifestyle as possible. We always try to have something similar, like she brings her own pizza. I will call the parents to find out what is on the menu, so I can help her to be part of the crowd."

Making accommodations at home means ensuring there is no cross-contamination. "I’ve divided the pantry," says Mazor. "Everything on her shelves is gluten-free. Everything needs to be labeled. She has her special containers. She has her own toaster, her own small oven. You have to have a dedicated area that’s safe for her in the kitchen."

At school, Mazor notes, "The only thing we’ve done is, of course, to alert the teacher that she has celiac disease. She always has some sort of snack or dessert for her if they have parties. The school’s policy is very strict. They really try not to include food as part of the celebrations in school."

In many schools, it is not always that simple. The GIG (Gluten Intolerance Group) Web site cites a recent survey by the American Celiac Disease Alliance (ACDA) stating that in almost every state, students with celiac disease have requested but were denied GF meals because of the cost. Kupper says the GIG has been addressing this issue for some time. "The American Disabilities Act for children in school does have a mandate for children with special dietary needs that affect their ability to succeed in school. We’re asking that the needs of these children be included in that funding as part of the school lunch program. Some schools believe that it has to be done with a 504 plan because it’s a special needs plan. There is a lot of resistance from schools to do this. It’s about an interpretation of the rules."

Kupper says the GIG is working to educate schools and teachers on how to create a gluten-free meal plan. "The law is not interpreted so that the gluten-free food has to be the same exact thing. A school may serve chicken nuggets to the general population, but they might also serve another form of protein such as a hamburger patty. It does not have to be the identical item."

If a school does not offer gluten-free lunches, Kupper points out an alternative. "One option for making this happen is that the school might be willing to let parents bring in foods to be stored and heated up there."

Staying gluten-free is not always easy, Mazor says. "There is no spontaneity, no surprises. If we go out, I always call ahead. I’m always prepared. I always bring snacks."

The diagnosis of celiac can be intimidating for parents. "A lot of parents are surprised," notes Heather Russell, out-patient pediatric nutritionist at St. Joseph’s Children’s Hospital in Paterson. "If they’re just told they have to change their child’s diet completely, they’re overwhelmed. I tell them its not major surgery; it’s just diet changes."

Russell understands the ramifications of the diagnosis. "We help them by telling them how to deal with parties, school, snack times, things like that. Sometimes in schools the materials they use for arts and crafts contain gluten. If they are doing papier mache, that contains gluten. I give them recipe alternatives. Play-dough also contains gluten, so they have to be careful with that as well."

For the Mazor family, changes in the kitchen evolved into a business. Mazor, who is also a caterer and certified chef from the Natural Gourmet Institute in New York, started Bliss Fine Foods in 2003, serving the New York City and New Jersey area. Bliss offers a menu of organic allergy-free appetizers, baked goods and desserts. "I’m coming from the culinary world and, as a mom, I feel I really understand the parent’s point of view. I try to use the most nutritional flours. I aim for the quality and flavor. Just because it’s gluten-free doesn’t mean it doesn’t have to taste good. Because of my background, I have customers with Crohn’s disease and diabetes, people allergic to so many things. I just had a little boy, 4 years old, who was allergic to gluten, to dairy, to nuts, to coconut and to soy. For us to make a birthday cake for him was more than just a cake. He had never had a birthday cake in his life."

Mazor has also written a cookbook called Mastering Your Gluten & Dairy Free Kitchen. "Nowadays there are many commercial products, but they are very expensive," she says. "I have listed in my book items to keep in the pantry for snacking, for cooking, for baking. I have included the names of companies and their Web sites. I think it’s important to know what to buy to keep expenses down."

At home, Mazor emphasizes the importance of reading food labels. "You especially have to be alert to modified food starch and soy sauce."

Registered Dietician Russell adds a warning. "Remember labels must be read every time you purchase food. Some products remain gluten-free for years, while others do not."

While following a gluten free diet can be challenging, it gets easier. "She’s learning to live with it," Mazor says of her daughter. "It’s a way of life. She feels stronger and healthier, and that’s the main thing."

Kathryn Davis is a New Jersey writer and teacher. You can contact Kathryn at parentpaper@northjersey.com.

abrir aquí:
http://www.northjersey.com/news/78200887.html?c=y&page=1