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Picture this: You make an appointment with your gastroenterologist because you have persistent heartburn. You schedule an upper endoscopy to figure out what’s going on, and a few days later, your doctor calls to tell you that you have celiac disease.
That’s exactly what happened to Paul Felsen five years ago, much to his surprise — and to his doctor’s.
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“He called me up and he was in shock, and he said, ‘You’re not going to believe this, because I don’t believe it: You have celiac disease,’” recalls Felsen, 75, of Denville, New Jersey.
What is celiac disease?
Celiac disease is a genetic autoimmune disorder that causes damage to the small intestine when you eat gluten, a protein found in wheat, barley and rye.
It used to be thought of as a disease that primarily affects children, says Suneeta Krishnareddy, M.D., gastroenterologist at Columbia University Irving Medical Center. But over time, doctors have realized that symptoms of celiac can look different in different people, so more adults are now being tested, Krishnareddy adds.
A study published in 2018 found that about 25 percent of diagnoses worldwide occur in people over 60, and many cases remain undetected.
Symptoms of celiac disease
Symptoms can vary widely, but common digestive symptoms can include:
- Bloating
- Chronic diarrhea
- Constipation
- Gas
- Lactose intolerance
- Loose, greasy, bulky and bad-smelling stools
- Nausea or vomiting
- Pain in the abdomen
Other symptoms can include:
- An itchy and blistering skin rash
- Fatigue
- Joint or bone pain
- Mental health problems, such as depression
- Headaches, balance problems, seizures or peripheral neuropathy
- Reproductive problems, including infertility
- Symptoms involving the mouth, such as canker sores, a dry mouth or a red, smooth, shiny tongue
Source: National Institute of Diabetes and Digestive and Kidney Diseases
When it comes to treatment, there’s only one option: a “lifelong adherence to a gluten-free diet,” Krishnareddy says. That means conventional breads, pastas, cookies, cereals and many other foods are out of the picture.
The sudden switch can be a challenge for people diagnosed later in life who have been accustomed to eating gluten their whole lives, says Melinda Dennis, nutrition coordinator at the Celiac Center at Beth Israel Deaconess Medical Center in Boston. Still, experts stress that sticking to a gluten-free diet is key for adults with celiac disease; if left untreated, it can increase risks for osteoporosis, intestinal cancer and other autoimmune disorders.
So, how do you get started? Here are tips for navigating a celiac diagnosis after 50.
What to do if you’re diagnosed after 50
1. Meet with a dietitian
“The number one piece of advice I would give somebody who’s recently diagnosed with celiac disease is to find a good celiac-trained dietitian,” says Ciaran Kelly, M.D., medical director of the Center for Nutritional Health at Beth Israel Deaconess Medical Center. He suggests looking for a professional at a nearby teaching medical center, as they’ll likely have one or more people trained in managing the condition.
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