Sami's Celiac Disease Story

August 5, 2020

By Heather Tunstall, guest contributor, Tunstall Content

Sami Thune spent her middle school years playing sports, leading an active lifestyle and preparing for high school. As she started her freshman year at St. Vincent-St. Mary in Akron, Ohio, she honed in on soccer, which included extensive training, exercise and drills that required a lot of energy and can be demanding on the body. 

But Sami’s mother began to notice more than just a typical athlete’s toning. She saw that her daughter had begun to lose weight, though Sami had always been thin. Following her instinct, she took Sami to see a doctor. 

“When we got there, my mom told the doctor to test me for food allergies and he said he didn’t think I had any,” Sami said. “She told him, ‘Please, just do it,’ so he did. The results came back that I had some generic outdoor allergies like grass and pollen but that I was also allergic to milk, eggs, and wheat.”

The doctor then told Sami and her mother that eggs and milk allergies were more of a concern, so not to worry about cutting out wheat-based foods. So, Sami continued to eat pasta, pizza, and other foods containing wheat as part of her daily diet. 

The Diagnosis

Sami’s stomach continued to cause her pain, with the severity increasing as the days went on.

“I remember sitting in my living room curled up in a ball.”

“There was a day where I couldn’t go to school because I was in so much pain,” she said. “I remember sitting in my living room curled up in a ball telling my mom that I need her to fix it because it hurts so bad.”

Her mother decided she needed further answers from the doctor, and this time, they were referred to a gastroenterologist. The gastroenterologist suspected that celiac disease may be the culprit, but recommended testing to make sure. 

Sure enough, the blood test came back indicating celiac disease. Sami then had a colonoscopy and endoscopy to verify the findings, and in May of her freshman year of high school, a celiac disease was confirmed.

Sami was 15 years old when she was diagnosed with celiac disease. In all, it took nearly four months to get a proper diagnosis from the time her mother initially took her to the doctor. Which is actually quick in comparison to the average 6-10 years it takes to be correctly diagnosed with celiac disease.

A New Lifestyle

With badly damaged villi, it would take some time for Sami to feel “normal” again. She began a strict gluten-free diet. But during her high school years, she found her food choices to be quite limited.

There were very few choices of gluten-free options, so I always had to pack my lunch,” she said. 

Now a 22-year-old student at Kent State University, she worked last summer as a dietary aid at an assisted living center in a nearby town. During her time there, she noticed that like her high school, gluten-free foods weren’t readily available. 

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Today, Sami’s goal is to help others with celiac disease or gluten sensitivity to find delicious meals that they can be happy eating. 

“It has taken me years to find the right foods.”

“I want to help people in their journey with celiac and help them find food that doesn’t taste like cardboard,” she said. “I have had that experience many times with gluten-free foods and it has taken me years to find the right foods that taste good and have the right texture.”

In her seven years since diagnosis, she has navigated living spaces that are not 100 percent gluten-free and knows how to keep herself safe in mixed-ingredient environments. Sami has volunteered to share her experience and recommendations through Beyond Celiac.

Sami’s story is similar to so many others who have been diagnosed with celiac disease. Sometimes it takes some nudging or encouragement to get doctors to test, and it can be a long path to find the right diagnosis and care.

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If you suspect you or someone you love may have celiac disease, consider bringing it up with your doctor. You can also order a home test through Beyond Celiac partner imaware.

If you or a loved one has been diagnosed with celiac disease, Beyond Celiac has a wealth of information and resources on living with the disease. Register today for our newsletter for the latest information on research, recipes, lifestyle tips and more.