There’s no way to prevent it, and there’s really no cure, and even though it creates a lot of inconveniences, those diagnosed with Celiac disease can learn to live full and healthy lives.
Just ask 39-year-old Wyatt Troxell, of Lewisburg. Since being diagnosed five years ago with Celiac, an allergic condition in the small intestine, he was left with no choice but to change his lifestyle — for the better.
“To this day, I think it was a blessing being diagnosed with it,” he said. Before that, he was overweight and was eating foods that were damaging his body. Now, his raw food diet is not only gluten free, but overall healthy. He also began running for exercise, a physical boost which he said also helped with the emotions he faced following the diagnosis.
He is honest about his first reaction to being diagnosed, however. After undergoing numerous tests to figure out why he was Vitamin D and B12 deficient, frequently getting sick and feeling extremely lethargic, he was encouraged by his wife, Jenn, who works for a gastrointestinal doctor, to get tested for Celiac disease — a disease prevalent in his family history.
A blood test and then an EGD confirmed it.
“My first thought was, I’m never going to be able to eat good food again,” he laughed. He remembered when is mother was diagnosed with Celiac when he was a teenager and had seen firsthand her very restricted diet. “There wasn’t a lot of options,” he said.
Allergy to gluten
Celiac disease, which affects about one in every 100 people (young and old) in the United States, is a genetic condition that manifests itself when a person eats food containing a protein found in gluten — typically wheat and certain grains.
According to Dr. Joseph Gallagher, of gastroenterology at Evangelical Community Hospital in Lewisburg, the gluten creates inflammation in the small intestine. “You actually get damage to the surface that helps absorb nutrients,” Gallagher explained. The inflammation flattens fingerlike projections called villi that do the absorbing.
Celiac disease is a very common disease, found in about one percent of the population, according to Ashley Imrisek, PA-C, of UPMC Susquehanna. That percentage is much higher than in the Asia Pacific regions, where gluten is not found in many of the foods they eat.
“It’s very prevalent in the western world,” she said. “It’s found in everything.”
Because it can be hidden in foods that most people don’t think of — such as beer, soy sauce, chicken broth, ketchup, potatoes and certain seasonings and spices — Imrisek recommends working with a nutritionist.
Gallagher said even some medicines use fillers that contain gluten. In addition, while dairy does not make Celiac disease worse, he said if you have Celiac “dairy is often poorly tolerated, because of the damage to the intestine.”
For several years, Diane Sones, of Danville, bruised very easily, dealing with acid reflux, abdominal pain and bouts of diarrhea for no reason. Finally, in 2004, her doctors decided to do testing, including a colonoscopy, scans and finally bloodwork. All of the tests came back positive for Celiac.
“It was right before Thanksgiving,” she said, “which was very depressing.”
In his office, Gallagher sees many patients with complaints of diarrhea and discomfort, gassiness and bloating — all symptoms of Celiac.
Imrisek said some classic symptoms include foul-smelling, greasy or floating stool, diarrhea, gassiness, weight loss, anemia, bloating, nausea and vomiting. At her office, they sometimes even test those dealing with constipation, as medicines could sometimes be masking that as a symptom of Celiac.
Both Gallagher and Imrisek recommend getting tested if you have symptoms, even if they’re not severe.
“The real key is to be thinking about it,” Gallagher said. “The symptoms are often very nonspecific. You have to have a high index of suspicion.”
He said the likelihood of a person having Celiac disease goes up exponentially if a first-degree relative has the disease.
Testing is usually done through a blood test, where they look for a specific type of antibody in the blood stream that would suggest Celiac, but Gallagher said a definitive diagnosis can be made by taking a biopsy of the small intestine. Genetic markers can also help to make the final diagnosis.
In some cases, a person may have the symptoms of Celiac but actually have what is called a “non-Celiac gluten intolerance,” Gallagher said, and simply going on a gluten free diet solves their problem.
“They could have a sensitivity but not a true allergy,” Imrisek explained.
But in any case, a gluten free diet is the only real treatment for Celiac.
While Celiac is not preventable, those with the disease can prevent worsening conditions and related, serious health problems that can result if ignored.
According to Imrisek, consuming gluten when you have Celiac disease will certainly inconvenience you with the normal symptoms that come along with it. But it can also cause anemia, causing blood counts to drop, leading to shortness of breath and feelings of fatigue.
Gallagher said it can also potentially lead to weight loss, bone disease and even neurological disorders. There are also a variety of autoimmune diseases that have been associated with ingesting gluten, including Type 1 diabetes and thyroid disease. Celiac disease, Gallagher said, can also increase the risk for certain types of tumors, as well as low birthweight in infants if their mothers are left untreated.
Living with Celiac
Sones, a health and physical education teacher at Shikellamy High School, said she was always so healthy prior to experiencing these systems, so the diagnosis was “alarming.”
“I was in complete denial and refused to accept the fact,” she said. She eventually learned her family had a history of the disease. One of them was her uncle, who gave her some tips on how to change her diet.
“I just had to make all the life changes I had to,” she said.
She learned to always be ready for unexpected attacks of stomach or intestinal distress, and of course has worked hard to develop a gluten-free diet as much as possible, though she admits it can be “very expensive” and the food used to be very hard to find.
“You have to change how you cook,” she said. Such as avoiding cross-contamination on cutting boards, utensils and toasters. And getting used to eating a meal different from those you dine with.
As more and more people are experiencing symptoms and getting tested for Celiac, more and more restaurants are researching and developing gluten-free menus. But even then, Sones said, it’s not a 100 percent guarantee.
She is required to get a colonoscopy every five years, and see her gastrointestinal doctor each year.
The first thing Troxell said he also had to do was research what he could eat.
“I went to the Internet and started finding out that gluten is hidden in so many different products you wouldn’t even think of,” he said. “It’s everywhere.”
“The more I researched, the more I found I just need to eat a lot of fruits and veggies, almost a raw food diet.”
It was admittedly difficult at first.
“Anytime something is new, you don’t have that long history of making it a habit yet,” he said. “There were times I reminisced about my favorite pizza that we used to eat as a family.”
But he’s come to appreciate the discipline that leads to, in reality, a healthy diet that’s good for everyone.
He is thankful also for the support that he has received from his family. His wife encouraged him to start running. He started small and eventually worked up toward running a 5K. He has lost weight and is in better shape.
In the last five years, he has run in six marathons, he said, “with no plan on stopping.”