Celiac at 75: RGA patient thankful for correct diagnosis

A late-in-life diagnosis of celiac disease hasn’t stopped Landis Lindell from enjoying food, beer and the activities he loved before being sidelined by unexplained sickness and weight loss.

Landis, now 80, started having health issues in 2013. He felt sick regularly – severe diarrhea would hit often and without warning – and he began losing weight (dropping from about 165 pounds to 135 pounds). An athlete for most of his life, Landis regularly played in pocket billiards leagues and had to stop playing because he felt “listless and his energy was dropping like a rock.”

“I’d wash my hands in the morning, and my wedding ring would end up in the sink. If I didn’t hurry to fasten my buckle, my pants would end up on the floor. I was a walking skeleton,” he said.

“He looked like he was going to die,” his wife, Pat, recalled. “He had no energy whatsoever.”

His primary physician referred him to Stacia Sackmaster, an advanced nurse practitioner at Rockford Gastroenterology Associates. Sackmaster ordered a series of tests that included a CT scan (to rule out a more serious condition) and a lab blood test called a transglutaminase antibody IgA (TTG-IgA), which is often used to start the evaluation in patients where celiac is a possible diagnosis.

Landis’ TTG-IgA was significantly elevated, so the next step was ordering an upper endoscopy (also called an EGD) to obtain biopsies of the top part of the small bowel, called the duodenum. His biopsy results confirmed the diagnosis of celiac disease.

A life-changing diagnosis

Celiac disease affects the lining of the small intestine, where the nutrients from the food we eat are absorbed. Gluten found in such products as wheat, barley and rye damages the small intestine, leading to the most common symptoms of weight loss, diarrhea and iron deficiency anemia.

“Mr. Lindell had all of those presenting symptoms,” Sackmaster said. “We were fortunate to diagnose him relatively quickly with celiac disease because in the U.S., the time before a correct diagnosis of celiac is made can be up to four years.”

The average age of a celiac diagnosis is between 40 to 60 years old, but about 20 percent of people are diagnosed after age 60, like Landis.

After those tests were complete, Landis returned to RGA, where Sackmaster talked to him about the importance of following a gluten-free diet – for the rest of his life. He was also treated for vitamin deficiencies and diagnosed with osteopenia, indicating thinning bones that is a precursor to osteoporosis and found at higher rates in celiac patients. Landis started working with a local dietician to determine the next steps for adopting the gluten-free lifestyle.

Because he had significant anemia, Landis required a series of infusions to increase his red blood cell count. He started a gluten-free diet that fall, which helped him start gaining weight. After a short time, he was able to start playing pool again, and his bloodwork has been normal ever since.

“I owe my life to Stacia,” he said. “She told me recently that my labs look fantastic, the gluten-free diet is great for me and to keep doing what I’m doing. She calls me her model patient.”

Living and learning

Landis knew nothing about celiac disease when he was diagnosed, so he keeps a purple folder with all the information he’s collected since then. Previously a Budweiser drinker, he’s found a gluten-free beer that he likes. And he continues to experiment with gluten-free foods to find what tastes the best.

Pat said they were actually relieved by the celiac diagnosis, in that what was wrong was manageable and not something more serious.

“We’re learning a little by little,” she said. “If he eats properly, he’s going to be fine.”

For now, there are only minor challenges. Landis and Pat like to go out for breakfast, but bread crumbs accidently left on his plate one time caused several trips to the bathroom after he was finished eating. Instant mashed potatoes are a no-go if the potatoes are not cut fresh or if other ingredients are included. Gravy? Depends on the thickening agent. Buffets can be a bit tricky, but he’s comfortable asking about ingredients in sauces and side dishes. And local restaurants seem to be more accommodating than ever to gluten-free requests.

Celiac is a genetic disorder that can be passed through the genes from parent to child; two of the Lindells’ children have been tested but don’t have it. Landis hopes that by telling his story, others will learn to consider celiac as a cause for their symptoms and can live a complete and satisfying life with this condition.

“Yes, this is something to be concerned about, but, more importantly, there are things you can do to still enjoy life to the fullest. You don’t have to live with a big cloud over your head,” he said. “Celiac disease is a lifelong disease, and I’m managing that. I have to eat gluten-free for the rest of my life. It’s not something I can just take medicine for.”

Sackmaster praised Landis for his dedication to following the diet and his positive attitude.

“Telling a patient that they have to avoid gluten for the rest of their lives can be difficult because it is a lifelong dietary modification that can be hard to follow,” she said. “Mr. Lindell embraced his diagnosis. He researched and kept very accurate notes. He followed all of my recommendations and continues to follow up with me once a year. He is a motivated and compliant patient, which is one of the reasons he is doing so well.”