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A culinary challenge

Family adjusts to help son manage celiac disease
Tara and T.J. Olson preparing a meal
Tara and T.J. Olson prepare a meal. The Olsons must watch what T.J. eats because of his celiac disease.
  For Tara Olson, making peanut butter sandwiches for her four children is not a simple process of grabbing a loaf of bread, a knife and a jar of peanut butter. Her 7-year-old son, T.J., was diagnosed with celiac disease in September 2010, and managing the condition requires strict avoidance of gluten, a form of protein found in wheat, barley, rye and oats.

That means T.J. requires his own jar of peanut butter, a separate knife and a clean preparation surface to avoid possible cross contamination with gluten-containing products. He also has his own gluten-free bread, a separate toaster and his own cupboard of safe snacks.

“Celiac disease is an autoimmune disease
that causes damage to the lining of the small intestine when foods containing gluten are eaten,” said Dr. Todd Twogood, Sanford Health pediatrician.

“The damage to the intestine makes it difficult for the body to absorb nutrients and can lead malnourishment and abdominal symptoms including diarrhea, pain and bloating.”

In January 2010, T.J. was diagnosed with type 1 diabetes. His sisters, Tylie, 15, and Taya, 13, also have diabetes. Tessa, 10, does not.

T.J. was screened for celiac disease when he was diagnosed with diabetes. His blood work was positive for celiac disease, and a biopsy of the small intestine confirmed the diagnosis.

Celiac disease varies in its severity and affects one in 133 people. Untreated, it can lead to autoimmune disorders, increased incidence of intestinal cancer, osteoporosis, infertility, miscarriage and nutritional deficiencies.

“I never noticed any problems, but in retrospect, T.J. did have a lot of digestive issues,” said Tara, a special education teacher. “Now that he’s eating gluten free, he rarely complains of a stomachache. He grew nearly an inch and gained six pounds in the first month of changing his diet. His blood sugars are also easier to manage.”

Keeping a close eye on what her family eats was nothing new to Tara.

“The Olsons were experienced reading labels because they were following a meal plan for diabetes,” said Cindy Anderst, Sanford Health licensed registered dietitian and certified diabetes educator.

Anderst provided education on label reading, finding hidden sources of gluten and avoiding cross contamination. Many items people wouldn’t suspect, such as soy sauce and most canned soups, contain gluten, Anderst said.

“T.J.’s celiac disease was more life changing to us because diabetes has been a part of our lives for 11 years,” Tara said. “Having to change how we ate was

  Dr. Todd Twogood
Todd
Twogood, MD

Pediatrician

Cindy Anderst
Cindy Anderst
Registered
dietitian/certified diabetes educator
overwhelming. After my first shopping trip when he was diagnosed, I cried in the car. So many products contain gluten.” Grocery stores offer gluten-free options for items including pasta, bread and flour, but planning meals still is a challenge for Tara because the entire family isn’t strictly gluten free.

Reading labels and avoiding cross contamination are also critical in the school setting for lunches, classroom snacks and parties.

“When T.J. goes to a birthday party, I send his own food,” she said. “I have to make certain anyone responsible for him knows what he can’t eat.”

Fast food and take-out are things of the past. The family rarely eats out and researches restaurants to ensure gluten-free options are available. T.J.’s grandmother bakes gluten-free snacks and buns for the family.

Traveling has proved extremely challenging for the Bismarck family. Tara’s husband, Troy, is a teacher and coach, so the family travels to out-of-town sporting events several weekends a month.

“I bought a tote we call our rolling restaurant and pack food for him in case there isn’t a restaurant or grocery store offering gluten-free items,” she said.

Tara has become an advocate for her son, educating about celiac disease and dispelling the misconception his eating gluten free is a fad, rather than something medically necessary.

T.J. is becoming familiar with what he can safely eat and asks questions regarding food labeling.

“He is,” Tara said, “an amazingly responsible boy.”

Click here for more information on Sanford Health’s children's services.

 

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