Living with celiac disease
Delafield mom hopes to spare other children 
the pain her son experienced


March 11, 2009

Three-year-old Robert Sommerfeldt, son of Jill and Mark Sommerfeldt, was recently diagnosed with celiac disease, and his mother hopes others can learn more about the symptoms from her familyís experience.

Jill Sommerfeldt hopes other families can learn from hers about the sometimes elusive symptoms of celiac disease.

Sommerfeldtís son, Robert, 3, was diagnosed with the disease late last year after months of health issues, questions and a misdiagnosis.

"They thought it was irritable bowel syndrome," said Sommerfeldt. "So they told us to put him on a high-fiber diet."

However, she said, the diagnosis was wrong and the treatment was worse. The high-fiber diet prescribed was exactly the wrong thing for Robert, who has since been diagnosed with celiac disease.

Celiac disease, according to information from the U.S. Department of Health and Human Services, is a digestive disease that damages the small intestine and interferes with the absorption of food. People who have celiac disease cannot tolerate gluten, which is found in wheat, rye and barley.




Sommerfeldt said her son had many of the symptoms of celiac disease, including gas, abdominal pain, diarrhea and constipation and weight loss. Screening for the disease is normally done on children with Down syndrome, like Robert, between the ages of 3 and 5 as people with Down syndrome have a higher risk of celiac disease, she said.

For Sommerfeldt, the breakthrough came when one of Robertís therapists asked if he had ever been tested for celiac disease.

With a gluten-free diet, Robert is free from the symptoms he was experiencing. Where he used to cry by himself in a corner at his day care, he is now a happy, energetic preschooler Sommerfeldt said.

"For the longest time, once he was on a gluten-free diet, we had to tell him, ĎThis wonít make your tummy hurt anymore,í" she said. "It took a long, long time. Even now when he tries something new, he thinks itís going to hurt his stomach."

Even the smallest amount of gluten can have a big effect on Robert, she said. Recently, a Goldfish cracker, accidentally left where Robert could reach it, caused so much pain Robert didnít eat for two days.

Finding good resources for gluten-free food is challenging, but Sommerfeldt said the cook at Robertís day care has been wonderful and Mollyís Bakery in Hartland offers gluten-free baked goods.

Sommerfeldt, 43, said she hopes if people become more aware of the symptoms, the disease might be screened for earlier. If left untreated, celiac disease can lead to a host of complications, including intestinal cancers, she said.

"We hope we can get a lot of people to be more aware," she said. "Itís devastating not knowing whatís going on."

This story appeared in The Freeman on March 11, 2009.