When You’re Diagnosed With Celiac After 65

Life after 65 can be full of changes—retirement, downsizing a home, grandchildren and, for some, newly diagnosed celiac. What was once thought to be a condition diagnosed primarily in children is now widely accepted as one that doesn’t discriminate based on age. In 1960, just 4 percent of adults diagnosed with celiac were over age 60. Newer research finds between 19 and 34 percent of adults diagnosed with celiac after 65, depending on the study. For some, it is a result of years or even decades of misdiagnosis. For others, celiac occurs without warning, even after seemingly lifelong gluten tolerance.

Diagnosis dilemmas

Getting the right diagnosis can be challenging for any patient, but for those over 65, physicians may not immediately think of celiac when evaluating a patient’s symptoms. For Betty Zerkle of St. Paris, Ohio, it was several years before her physicians figured out the mystery. “In 1998, I started to have problems,” she recalls. “I had diarrhea I couldn’t control; even with medication, it kept getting worse. I was tired and weak. My doctor kept treating me for reflux disease and irritable bowel syndrome [IBS].” It took a diagnosis with another autoimmune disease for her doctor to run tests for celiac—“I was finally diagnosed in 2005 at age 72.”

Symptoms of celiac often overlap with those of other conditions, which likely delays the diagnosis for many people. Older adults with celiac may also present with fewer classic gastrointestinal (GI) issues, instead experiencing other symptoms like anemia or fatigue. Anemia, which is very common in those with celiac, can also be a marker of more serious diseases such as colon cancer. This may lead to extensive testing for other conditions before a physician even considers celiac.

The tide may be changing, however. Lori Welstead, registered dietitian at the University of Chicago Celiac Disease Center, says she is seeing more patients diagnosed after retirement. “It’s really difficult to put a number or percentage on it, but I would say about 5 percent of my newly diagnosed patients are over the age of 65.”

For Vicki New of Indianapolis, Indiana, weight loss and diarrhea were her main symptoms. “My doctor was great, even though he admitted he didn’t know a lot about celiac disease. He knew how to get a diagnosis at least,” she recalls. Welstead agrees: “Within our celiac center, our physicians are more conscious about celiac disease in older patients, especially those who have not only GI symptoms and weight loss, but iron deficiency.”

Facing challenges

A life-changing diet is difficult to adopt at any age but may be particularly difficult for an older adult. For Zerkle, label reading was difficult. “Back then, I had to write letters to a lot of manufacturers to see what was safe. At the time I was diagnosed, I couldn’t buy gluten-free foods at the regular grocery store. I had to go to the health food store,” she says. “There was so much that I was afraid to eat.” Zerkle wrote letters to celiac associations for information and found a cookbook that was particularly helpful (see sidebar for Betty’s Best Tip).

For New, one challenge was sharing a divided house with her husband, Jim. “When I cook, it’s all gluten free. He has his things, like bagels and English muffins, but I’m very conscientious about cross-contamination.” She jokes, “It’s like the television show Laverne & Shirley. I write a ‘V’ on everything that is mine.” She also thinks the gluten-free label has been very helpful and that the gluten-free diet has made her a more adventurous cook. “I found a gluten-free cookbook this year for our holiday meals. I made my muffins and cornbread,” she says. “I bought a lot of ingredients from the baking area of the grocery store that I had never purchased before. It was a lot of fun, and nobody knew the difference.”

For both New and Zerkle, eating in restaurants has taken some adjustment. “I have a few restaurants that I relish,” says New, “but most restaurants have a gluten-free menu, and I call ahead and talk to them. I’ve never felt singled out in any way.” Zerkle experienced changes in her social life. “When I first got this, I didn’t tell my church friends. I just told them I couldn’t eat wheat,” she recalls. “I don’t eat out as much as other people do, but when I do, I take precautions like bringing my own salad dressing.”

No bones about it

Those with celiac may also have deficiencies in calcium and vitamin D levels. These shortfalls may be made worse by lactose intolerance, common in newly diagnosed patients. The risk of osteoporosis, a low bone mass that can lead to fractures, can be high. “I had a bone scan and was found to have osteopenia [softening of the bone] at the time I was diagnosed,” Zerkle says. “I’m finally seeing improvement now in my bone scan levels. The last one I had done, my bone density is back up to normal.” Those with lactose intolerance may still be able to tolerate lower-lactose sources of dairy, such as cheese and yogurt. Non-dairy sources of calcium include green leafy vegetables, almonds, sardines, fortified soy or almond milk, and fortified orange juice. Vitamin D, which helps the body absorb calcium, is synthesized from exposure to sunlight, and foods such as milk, salmon, sardines, shrimp and cod.

Welstead warns her patients of nutritional deficiencies associated with celiac. “Many of my patients have osteopenia or osteoporosis. They may have low vitamin D and B12 levels, which is not only due to malabsorption but also age,” she states. “We correct them with supplements and do a bone mineral density test to determine their baseline level. We also put them all on a gluten-free multivitamin with minerals and added supplements as needed.”

Nutritional deficiencies can be made worse by poor appetite at meals, a common problem among older adults. This is particularly a problem with those who eat alone frequently. Cooking a balanced meal for one person may seem like too much trouble, leading to a lack of variety and nutrients. For older adults with celiac disease, including lots of “nutrient-dense” foods, which provide a lot of nutrition per calorie, is important. Good examples of these foods include lean protein, gluten-free whole grains, fruits and vegetables, and dairy products. Less-nutrient-dense foods include gluten-free cakes and cookies, pretzels and crackers. These items are higher in calories, fat and sodium, but are not particularly nutritious. They can be used to round out a meal but they should not constitute the mainstay. For those who have trouble maintaining their weight, a high-calorie nutritional supplement shake may be appropriate. The vast majority of these products, like Boost and Ensure, are gluten and lactose free.

Constipation is a common problem in older adults, and may particularly affect those on the gluten-free diet. Eliminating wheat products, especially bran cereal, may cause a significant decrease in dietary fiber. “Before I found bread and crackers that I liked, I was constipated and needed more fiber,” says Zerkle. Healthy examples of foods high in fiber include gluten-free whole grains, such as quinoa, sorghum, millet and buckwheat, as well as fruits and vegetables. Older adults may also not drink enough fluid, which may make constipation worse. It is important to consume adequate fluid, which helps high-fiber foods move through the digestive system. Water, fruit juice, tea, coffee and soups are all good sources.

Teamwork is key

Those with celiac at any age need not only strong support from their physician but also from a registered dietitian nutritionist (RDN), pharmacist and, ideally, a support group. Welstead finds that she doesn’t have to make a lot of adjustments in the way she instructs her older patients. “I always go over their typical diet before they started the gluten-free diet, then I come up with specific recommendations to substitute their favorite foods and commonly consumed foods,” she states. “I always encourage them to bring a family member or friend if they live alone that can be an extra set of ears, as the first visit can be a lot of information to process at once.” For those balancing a new gluten-free diet with other dietary restrictions, such as a low-salt diet for heart disease, assistance from a dietitian is an absolute must.

Even though finding gluten in a medication is rare, it does occasionally happen. Older adults may take more prescription medications than younger patients, so a current list should be reviewed. Welstead says she will help her patients review their list with the assistance of the website Gluten Free Drugs (glutenfreedrugs.com), which is run by Steve Plogsted, a pharmacist, expert on gluten in medications and regular contributor to Gluten-Free Living’s Office Hours column.

New says her celiac support group and dietitian were a tremendous help. “There are a lot of fear and anxieties with celiac disease. You have to have a support group—people to talk to—who can help you with the situations that you need help with.”

Being patient

It may take more time for an older adult to see improvements in their symptoms and celiac antibodies. Welstead urges patience. “Antibody levels do seem to take a bit longer to drop in these patients, likely due to their age,” she says. “In some of these patients, they are coming in with antibody levels that are exceedingly high. We can’t expect them to drop to normal in three to six months, but this holds true for younger patients as well.”

Symptom improvement may also take time. “I certainly do feel so much better, even though it took a little while,” says Zerkle. “Don’t get too frustrated if you don’t feel better right away. Each year, I feel a bit better than the last.”

New agrees: “I absolutely do feel better. I don’t relish the weight I gained back, but there are positives and negatives to everything!”

Attitude is everything

Welstead states many of her patients are overwhelmed at the first visit, and for those without gastrointestinal symptoms, they may even be reluctant to start a strict gluten-free diet. But she has also seen plenty of successes. “Two patients that I saw in the past year were over 70 years old, newly diagnosed. One developed spreadsheets of his favorite gluten-free flour blends and was baking up all sorts of healthy gluten-free bread,” she recalls. “The other was a runner who was having trouble with energy as well as unintended weight loss before diagnosis. Now that he is on the gluten-free diet, he is back to running and has gained weight back. It was inspiring to see them adjust so well to the diet despite their age.”

New agrees that age doesn’t play much of a role in how she handles the gluten-free diet. “It’s good that I know that I have this so my grandsons can be tested on a regular basis,” she says. “It’s a life-changing event, not something that you can think about occasionally or be nonchalant with. But really, I don’t feel that being over 65 is any different than being 55 or 50. It’s not about the age; it’s about how you manage.”