When celiac disease strikes later in life

After experiencing months of severe diarrhea and marked weight loss, Bess was astounded to learn in her 70s that she had developed celiac disease, an autoimmune digestive condition triggered by gluten, a sticky protein found in grains such as wheat, barley, and rye.

But diligent efforts to cut out all apparent sources of gluten didn’t eradicate her symptoms. Gastroenterologist Dr. Ciaran Kelly, medical director of the Celiac Center at Harvard-affiliated Beth Israel Deaconess Medical Center, knew he needed to dig deeper. Delving into her daily routine, Dr. Kelly learned that Bess received Communion each day at Catholic mass. The wafer she ate during the ritual contained enough gluten to continue to fuel her symptoms — driving home how minuscule amounts can make a significant difference to a celiac patient’s health.

“It’s not like she was eating pasta and bagels — it was simply a tiny Communion host,” Dr. Kelly recalls. “Luckily, her parish priest was able to obtain an ultra-low-gluten host, and her symptoms then resolved.”

Bess’s situation isn’t as unusual as some might think. Affecting about 1% of the U.S. population, celiac disease is not typically diagnosed in childhood, but later in life — and more often in women, according to the National Celiac Association.

Like Bess, many people diagnosed in middle age or beyond are often astonished to learn they could develop the condition later in life. “I think the major reaction is to be taken aback by the need to completely change their diet, which includes how they shop for, prepare, and consume food — not only in their own homes, but outside the home,” Dr. Kelly says.

Unrecognized symptoms

When someone with celiac disease consumes gluten, the immune system reacts by damaging the small intestine, which loses its ability to absorb crucial nutrients. This can lead to an array of symptoms, many of which are often dismissed for years. These may include

• intestinal problems, such as bloating, diarrhea, or constipation
• weight loss
• rashes
• fatigue
• brain fog
• joint or muscle pain
• irregular menstrual periods
• deficiencies in nutrients, especially iron, vitamin D, vitamin B₁₂, and folic acid.

Some people with celiac disease even experience hair loss, Dr. Kelly says. But, as with joint pain or irregular periods, those downstream issues tend to appear after celiac disease has gone undetected or been poorly managed for a long time.

“If you think you’re having possible celiac symptoms, see your doctor,” Dr. Kelly advises. “They’ll probably conclude that testing is warranted. This involves a simple, easy-to-perform blood test, which is quite accurate.”

How to adapt

Controlling celiac symptoms — and its underlying damage to the intestine — requires adopting a strict gluten-free lifestyle. But for people diagnosed later in life, the transition can be especially challenging.

While more gluten-free options than ever are available in grocery stores and restaurants, newly diagnosed patients are often overwhelmed by the need to “completely change how they approach their food,” Dr. Kelly says.

Here are some ways to smooth the path forward:

Create a gluten-free haven. Designate specific areas in your kitchen to prepare gluten-free food. Clearly label gluten-free items and regularly wipe down surfaces to avoid accidental cross-contamination.

Shop smart. The perimeter of supermarkets typically houses more naturally gluten-free items such as fruits, vegetables, meats, and dairy products. “Eating processed foods opens the door to gluten contamination in a big way,” Dr. Kelly says.

Stock your pantry. Keep gluten-free staples such as flour, pasta, and baking mixes on hand so you’re not tempted to consume regular varieties.

Examine labels. Gluten may be hiding in a variety of boxed and prepared foods where you might never expect to find it, Dr. Kelly says.

Seek professional guidance. Consult with a registered dietitian who can answer questions about gluten-free living, help identify hidden gluten sources, and offer encouragement when needed. “People have to learn a lot of tricks to avoid gluten in their diets,” Dr. Kelly says.

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