Beating an invisible disease – Rachel's story

“I came to accept that I would always be sick…I almost gave up.”

Rachel Suntop struggled for nearly 20 years with extreme fatigue, brain fog, anxiety, weight loss and other debilitating symptoms. She saw numerous doctors who tried to treat individual aspects of her sickness, but her overall health became steadily worse. Work, travel and even simple gatherings with friends and families became increasingly challenging.

Finally, a gastroenterologist tested her for Celiac disease. It came back positive.

Celiac disease is an auto immune disease caused by gluten that damages the small intestine and prevents it from absorbing key nutrients. People with the disease must avoid gluten entirely, as a single exposure can often affect the intestinal lining and cause symptoms for weeks.

Rachel, who was living in Illinois at the time, felt isolated.

“It was a difficult diagnosis,” she said. “I was angry, upset and I felt like I was alone.”

She started researching more about the disease but found conflicting information and very few recommendations for moving forward. While Rachel tried to eliminate gluten from her diet, her symptoms persisted from cross-contamination (when gluten-free food encounters food that contains gluten) caused by restaurants and other peoples’ cooking. After a year and a half of adjusting her diet and only eating at dedicated gluten free restaurants, she finally started to feel better.

Rachel moved to Florida and is now working at the Manatee County Library, something she says she would never have been able to do in the past. She continues to pursue her love of travel and art, scheduling appointments with Dr. Khazanchi when a problem arises.

“It’s been a long and difficult journey,” Rachel reflected. “I had to be very persistent even when I felt like giving up.”

Her advice to others struggling with the disease?

“Keep pushing. I often heard that I would feel better immediately, and with me that just wasn’t the case,” she said. “There was a lot of trial and error but persevere and try not to let this disease prevent you from pursuing the things you love in life.”

Rachel recently wrote an article for the Bradenton Herald about gluten-free resources she finds helpful in the management of her illness. Read the article here.