Janice Peterson - DAILY HERALD | Posted: Sunday, November 11, 2007 11:00 pm
Orem girl can only eat five foods; Mother wants to connect to others with similar problem
Rice, rice milk and sugar is not a typical breakfast for a 9-year-old, or anyone, for that matter.
For Orem resident Ashley Zundel, this bland concoction is the only breakfast that doesn't make her sick. She has had a rare food allergy since birth that limits most of her foods. She can only eat five foods now, and her mother said she may soon be on a special formula diet.
"She's just allergic to more than we ever imagined," said Tammy Zundel, Ashley's mother, who would like to find other families affected by the disorder.
Although Ashley has had trouble with food since she was born, she was not diagnosed with eosinophilic gastroenteritis until last December. For the first eight years of her life, Ashley lived with diarrhea, vomiting and severe stomachaches without a sure diagnosis.
According to the American Partnership For Eosinophilic Disorders' Web site, people with eosinophilic gastrointestinal disorders have above normal amounts of a type of white blood cell in one or more places in their digestive systems.
Tammy said it was clear there was a problem even when Ashley was very small.
"When we would change her diaper, it smelled like something had died," Tammy said. "You just knew it wasn't normal."
Ashley's parents took her to the doctor several times, but were told she had toddler diarrhea. Various other diagnoses she received included Crohn's disease, celiac disease and irritable bowel syndrome.
Last year, after Ashley was still reacting badly to food, doctors performed an endoscopy, and a biopsy revealed she has EG. Although Ashley finally has a name for her condition, the lifelong challenge has only begun.
Children with the disease have a limited diet, but they are not all allergic to the same foods. They must start by eating only select foods, and then add one food at a time to determine what makes them sick.
"We've cut out everything we can think of, and she's still sick," Tammy said.
Ashley can only eat five foods: rice, rice milk, turkey, potatoes and apple juice. Like many other children who suffer from EG, she may soon be forced to switch to a special formula diet, which would eliminate any protein.
According to the American Partnership for Eosinophilic Disorders, whole or partial protein in foods can cause allergic reactions. Some children have trouble drinking enough of the formula, and a feeding tube is necessary.
Although foods can be added to a diet after a child's body has been cleansed with the formula diet, many children are on the formula diet for years.
The disease is difficult for a child to cope with because there are few foods they can enjoy, Tammy said. She has been giving Ashley tree nuts as a snack, but recently found out she is allergic to them as well.
"She cried, and her brother hugged her," Tammy said. "It was a little bit of a mourning for her."
Ashley's brother, 6-year-old Preston, may also have the disease, Tammy said. He is showing some of the same symptoms and will be tested this month.
Tammy said her daughter is still sick, but her doctors have added one or two foods including apples recently because Ashley is not gaining enough weight. "We went out that day and bought an apple," Tammy said. "It was like gold to her."
Along with food restrictions, children also face social problems with the disease. Teenagers who are on the formula diet do not want to carry around a bottle of formula, and it is difficult to tell a date they cannot eat.
Tammy said she hopes Ashley will not be on the formula diet when she is a teenager, but younger children deal with social pressures as well.
"It's hard to go to birthday parties when everybody else can eat and you can't," Tammy said.
The whole family is affected when a child has EG, she said, and they try to support Ashley with her restrictions. The family does not order pizza or go to restaurants.
Ashley cannot eat candy, so her older sister stashes candy at a friend's house to avoid eating the treat in front of Ashley. When Halloween came around this year, Ashley went trick or treating and her parents bought the candy from her so she could buy herself a toy.
"We try not to make her feel bad about what she can't have and be positive about what she can have," Tammy said.
Ashley's disease is very rare, but Tammy said she should not have to feel alone. There are other children around the country, and even in Utah, with similar conditions, and Tammy wants to create a support group in Utah for the disease.
Tammy said there are support groups in other states and she has been working with the American Partnership For Eosinophilic Disorders to create one here. The national group helped her find a physician to be involved, which is a requirement to prevent incorrect information from getting to group members about treatments.
Only five members are needed for an official group, but Tammy said she has just two members so far. She has made fliers to put up at Primary Children's Medical Center in Salt Lake City.
"I know that (other children with the disease) are out there, but I'm new to this disease," Tammy said. "I don't know how to find them."
Tammy said it is important for other families who deal with the disease to have a support network. A support group can help affected families see what others are going through and also learn how to cook meals using only a handful of ingredients.
Tammy said she is learning how to be creative with her foods, making gravy out of potato starch and turkey drippings or soup with water, turkey, potatoes and rice noodles. She would have liked a support group to help her with this when Ashley was diagnosed, she said.
"I would love to have somebody show me," she said. "How do I cook with only five ingredientsfi"
• For more information about joining a support group for EG, e-mail Tammy Zundel at uteos@earthlink.net.