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Published: Monday, 11/24/2008

Gluten disorder takes families by surprise

BY JULIE M. McKINNON
BLADE STAFF WRITER
Courtney Taylor sits with her daughter, Addisyn, who was diagnosed with celiac disease, an intolerance to gluten, which is found in wheat and other grains. Since the diagnosis, Ms. Taylor has been eliminating gluten from her family's diet. Courtney Taylor sits with her daughter, Addisyn, who was diagnosed with celiac disease, an intolerance to gluten, which is found in wheat and other grains. Since the diagnosis, Ms. Taylor has been eliminating gluten from her family's diet.
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Courtney Taylor worried when her younger daughter, Addisyn, was sick most of last winter.

The tot stopped growing and otherwise developing. But a viral infection wasn't the cause, as her mother initially was told.

"I knew something was going on," said Ms. Taylor of Carleton, Mich. "She just kind of stopped doing everything."

Then, last summer, Addisyn was diagnosed with celiac disease, an intolerance to wheat gluten and other grain proteins that can manifest when an infant is less than a year old.

After four months of following a gluten-free diet - the only treatment for the autoimmune digestive disease - the 2 1/2-year-old is thriving and lively again, said Ms. Taylor, who said she is also eliminating gluten from the rest of the family's diet.

"It's been hard, but in a way, it's curable if you stay gluten-free," she said. "You've just got to keep moving toward getting better."

Gluten-free foods and recipes are becoming more common as an increasing number of people are diagnosed with celiac disease, which affects roughly one in 133 Americans and can appear at any age, according to the Celiac Disease Foundation.

Still, most people with celiac disease remain undiagnosed, although doctors and patients are becoming more aware of it, said Addisyn's pediatric gastroenterologist, Dr. Mark Naddaf of St. Vincent Mercy Children's Hospital in Toledo.

Abdominal discomfort, diarrhea, or severe constipation are hallmarks of celiac disease, which appears to be linked to a genetic disposition, Dr. Naddaf said.

Other signs include skin rashes, headaches, anemia, arthritis, and other symptoms that can be caused by other ailments, Dr. Naddaf said. Such vague symptoms make it harder to recognize celiac disease, which can be diagnosed only through a biopsy showing damage to intestinal lining, he said.

"As you can see, it can be just about anything," Dr. Naddaf said of celiac disease symptoms. "It is very common, but other reasons are far more common."

Having undiagnosed celiac disease or not following a gluten-free diet can cause bone loss and other problems later in life because the small intestine of an affected person is unable to properly absorb nutrients, Dr. Naddaf said.

Following a gluten-free diet can be tough, especially for older children and adults who are used to eating food with wheat and other grains, said Debbie Verkin-Siebert, a pediatric dietitian who works with the Taylors and other families.

Grocery bills for Erica Chappel's family in La Salle, Mich., have at least doubled since the 12-year-old was diagnosed with celiac disease in March after several months of gastrointestinal problems. Gluten-free bread and other foods are much more expensive, said her mother, Maureen Chappel.

One of Erica's three siblings has since been diagnosed with celiac disease, and the whole family follows a gluten-free diet, Ms. Chappel said.

Besides products that are typically wheat-based, such as bread and pasta, gluten can be found in cold cuts, soups, jelly beans, and other foods.

Erica said eating in restaurants can be difficult because she can't order whatever she wants.

Two local support groups, Gourmet Celiac Group and Gluten Free Support of Toledo, were formed in 2006 to help people with gluten intolerance cope with their diets.

They share a Web site, glutenfreesupportoftoledo.com, and have a combined membership of about 70 people.

Jean Meagley of Toledo, who founded Gluten Free Support of Toledo, said she started having headaches and gastrointestinal problems soon after she had a heart transplant in 2001. She was diagnosed with celiac disease almost three years ago. A gluten-free diet got rid of related symptoms in three weeks, she said.

More information about celiac disease is becoming available, as are products in local grocery stores, restaurants, and bakeries, Ms. Meagley, 59, said.

Contact Julie M. McKinnon at:

jmckinnon@theblade.com

or 419-724-6087.



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