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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 family’s experience.
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DELAFIELD -
Jill Sommerfeldt hopes other families can learn from hers about the
sometimes elusive symptoms of celiac disease.
Sommerfeldt’s 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 Robert’s
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, ‘This won’t make your tummy hurt anymore,’"
she said. "It took a long, long time. Even now when he tries
something new, he thinks it’s 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 didn’t eat
for two days.
Finding good resources for gluten-free food is challenging, but
Sommerfeldt said the cook at Robert’s day care has been wonderful
and Molly’s 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. "It’s devastating not knowing what’s going
on."