Cynthia Grenham works long hours as a realtor outside Boston.
But not too long ago, she couldn’t get through most days without taking a nap.
Grenham had other puzzling symptoms, including stomach upset and severe skin irritation. Sometimes her brain felt so foggy, she struggled to find the right word to express what she wanted to say.
Grenham’s father had died from complications of celiac disease. But she never thought that could explain her own symptoms.
“Nobody picked up on it,” she says. “Nobody tested me.”
Five years after her symptoms started, Grenham was finally diagnosed with celiac disease, at the age of 65.
Many people mistakenly believe that older adults can’t have celiac disease, and that if they do, they can’t benefit from treatment, says Alice Bast, founder and president of the Philadelphia-based National Foundation for Celiac Awareness.
But recent studies show that about 2 percent of older adults have celiac disease, which is double the rate for the general population. Research also indicates that the risk for celiac disease rises with age.
“People think, ‘I can’t have celiac disease because I’m too old,’” Bast says. “No matter what age they are, if they have signs, symptoms or family members with celiac disease, they need to get tested. It’s critical.”
A 2009 Mayo Clinic review of recent research found that 50 is the median age for a diagnosis of celiac disease. But one-third of new patients are diagnosed after age 65.
Daniel A. Leffler, M.D., a gastroenterologist with the Celiac Center at Beth Israel Deaconess Medical Center in Boston, says he and his colleagues routinely diagnose people in their 60s, 70s and even 80s.
“Ten years ago you’d have to search far and wide for somebody diagnosed over age 60,” Leffler says. “Now it’s pretty common.”
Seniors with celiac disease encounter an average delay in diagnosis of 17 years, the Mayo Clinic review found. That’s up to three times longer than the delay faced by younger peers.
Once diagnosed, older adults with celiac disease face a unique set of challenges, ranging from financial to social. They might struggle to adapt to—and afford—a gluten-free diet. Limited mobility can prevent frequent grocery store trips, and failing eyesight can make it difficult to read the small print on food labels.
Medically speaking, older adults’ intestines tend to heal more slowly from damage caused by years of undiagnosed celiac disease, Leffler says.
“The response is not as quick or complete as it is for younger individuals,” he says. “They face a tougher road right off the bat.”
But Grenham is proof that seniors with celiac disease can live full and active lives. After following a gluten-free diet for five years, Grenham no longer has skin or neurological problems, and her energy has returned. “I’m a completely changed person,” she says. “I’m 70 years old and get tired at times, but I don’t have to do this 4 o’clock nap thing. I go, go, go.”
Getting a diagnosis
Research clearly shows that people can develop celiac disease at any age, even if they’ve tested negative before, says Ronni Alicea, a New Jersey registered dietitian who specializes in celiac disease and seniors.
It’s possible to develop celiac disease as a teenager and not be diagnosed until age 90, she says. A person also could develop symptoms at age 85 and be diagnosed at 86.
There are several reasons that seniors might face a delay in diagnosis. Older adults usually show symptoms that are similar to those in younger celiac patients, Leffler says. But the Mayo Clinic review found that older adults sometimes show less prominent gastrointestinal symptoms and more atypical symptoms as Grenham did.
Older adults are more likely to have other medical problems, which also can complicate diagnosis, Leffler says. Gastrointestinal symptoms could be caused by another medical condition or a side effect from a prescription drug. Some symptoms originally could be attributed to normal aging.
“It can be confusing to tease out what’s related to celiac disease when a person has other medical problems,” he says.
For people who’ve suffered symptoms for a long time, a celiac disease diagnosis can come as a relief, Leffler says. But someone who’s had symptoms for 30 years might also feel frustrated that their fairly straightforward problem took so long to diagnose. Seniors who are newly diagnosed should not panic, Leffler says.
“Almost everyone diagnosed has had [celiac disease] for a long time,” he says. “Realize it’s not an emergency. It takes time. Nobody gets the gluten-free diet right overnight.”
Staying positive can make a big difference, Bast says. Focus on the foods you can eat, not the ones that are now off-limits. Bast met one man who was diagnosed at age 93. Once he adapted to the gluten-free diet, he said he felt 20 years younger.
“You can feel better and improve your quality of life at any age,” she says.
A team effort
Successfully managing celiac disease as an older adult requires support from a multidisciplinary team. Connecting with professionals and a good support group can help seniors feel better and stay independent, Bast says.
“You have to advocate for yourself,” she says. “Be empowered and not ashamed. Ask for help.”
Your doctor and a registered dietitian with expertise in celiac disease can provide guidance through the transition to a gluten-free diet. Seniors who live in a retirement community should meet with the nutrition professional on staff.
Clear the pantry and refrigerator of gluten. Then check the medicine cabinet.
“Seniors tend to take a lot more medications,” Bast says. “In addition to gluten being in food, it can also be hiding in your medications.”
Although most prescriptions are gluten free, according to Steve Plogsted, a pharmacist at Columbus Children’s Hospital, a few are not. Gluten is used as a filler in some drugs. Since these inactive ingredients don’t have to be listed on prescription labels, it can be difficult to determine which drugs contain gluten. Also inactive ingredients can change and the same ones are not used from manufacturer to manufacturer of a medication. That means seniors have to check all medications regularly. Leffler recommends referring to Plogsted’s website, glutenfreedrugs.com, which is widely recognized as the best source of information about gluten in drugs. Plogsted also writes a recurring column in Gluten-Free Living which answers readers’ medication questions.
Safely managing medications can be overwhelming for an older adult with celiac disease, particularly if there is memory loss, Bast says. That’s why it’s important to have a pharmacist on your team. Set up a meeting to review your medications and identify any potential problems.
Seniors who are “shopping” for a retirement community should choose one where the kitchen staff is trained and gluten-free protocols are in place, Bast says. Ideally the community will have a registered dietitian and pharmacist on staff.
“You want to make sure if you are going to live somewhere, that you can eat and be accommodated, especially if you’re not as mobile,” she says.
Alicea, the R.D., suggests that seniors meet with the food service director at any prospective new home. Ask if the staff has handled a gluten-free diet before or if they are willing to learn. Don’t stop there.
“Ask to speak to other gluten-free residents,” she says. “They’ll be the ones to tell you what’s really going on.”
At one community, Alicea met seven residents with celiac disease. None were happy with the kitchen’s gluten-free offerings, a good indication the home was not a good choice for someone looking for gluten-free accommodations.
Seniors who decide to move shouldn’t settle for a handshake, Alicea says. Make sure the community’s pledge to provide gluten-free meals is noted in your contract.
Following the diet
Many seniors embrace the transition to a gluten-free diet because they feel so much better. Others are intimidated about trying something new.
Newly diagnosed seniors might be reluctant to alter a lifetime of dietary habits, Leffler says. In general, the longer you do anything, the harder it is to change.
“When you’ve been eating a certain way for 50, 60, 70 years and you suddenly have to make dramatic changes to what you can eat, that can be very traumatic,” he says.
Following a new diet can be especially challenging for older adults with memory loss, Alicea says. Those with dementia, in particular, require close supervision.
Some newly diagnosed seniors might decide they would rather live with celiac symptoms than change their diet. But, Alicea says, “The consequence for not following the diet is you’re just not as healthy.”
Having to follow a special diet can lead to a sense of isolation, especially for homebound seniors. Dining out or attending social events that involve food might not seem worth the effort. Celiac disease support groups can be a great source of companionship for older adults, Alicea says.
When Grenham, the Massachusetts realtor, was first diagnosed, her husband approached her new diet with caution. She initially cooked one meal for herself and another for him.
Now that Grenham is more skilled at cooking gluten-free dishes, she and her husband eat the same meals about 95 percent of the time. He still won’t eat gluten-free bread, and she doesn’t blame him.
“We eat very well,” she says. “I always want to show people it’s not that difficult.”
Keeping expenses in check
Grenham works with newly diagnosed celiac disease patients through her support group, the Healthy Villi. She often takes her new friends to the grocery store and points out gluten-free products that are worth the money.
No matter what their age, most who are newly diagnosed experience sticker shock, Grenham says. But the cost of a gluten-free diet can be especially burdensome for seniors on a fixed income.
“It’s very, very expensive. There are no two ways about it,” she says, noting a loaf of bread can cost $7 and a pound of pasta $4.
Grenham recommends websites such as Gluten Free Saver and Gluten Free Mall to people with limited budgets or mobility. (See our story on saving money through online shopping.)
Seniors who have trouble getting to the grocery store on a regular basis can make it easier on themselves with some simple substitutions, Bast says. For example, canned vegetables, which cost less and keep longer, can be a good alternative to fresh.
Family or friends of an older adult with celiac disease should check in regularly to make sure their loved one’s kitchen is stocked with nutritious gluten-free foods, she says.
Seniors with celiac disease can successfully manage their diet without ever buying more expensive ready-made gluten-free products, Alicea points out.
“If you can’t afford to buy processed [foods], you’re not going to starve,” she says. “Naturally gluten-free foods are abundant.”
Some older adults depend on senior centers or Meals on Wheels for food. Social service agencies currently aren’t required to provide gluten-free food, and many lack the resources to do so, Alicea says.
The road to recovery
Recovery often comes more slowly for seniors with celiac disease, Leffler says. Healing generally slows with age, and many older adults unknowingly had celiac disease for years before diagnosis.
“Clearly the older you are, the more medical problems you have, and the harder it is for the intestines to heal from celiac disease,” Leffler says.
Seniors generally have the same associated conditions that can afflict celiac patients of all ages, he says. Age and a delay in diagnosis sometimes can lead to more serious conditions, including autoimmune disorders and some cancers.
Seniors with a delayed diagnosis are likely to have longstanding nutritional deficiencies, Alicea says, particularly involving absorption of nutrients. This can lead to conditions such as bone disease and anemia, and often calls for extra supplements. (See our story on celiac disease and bones.)
Seniors who are diagnosed but still have stomach pain or diarrhea should not assume that celiac disease is to blame, she says. Another condition, such as lactose intolerance or diverticulitis, could be the culprit.
“People blame celiac disease and sometimes don’t seek medical attention when they should,” Alicea says.
Since her celiac diagnosis, Grenham has developed multiple food allergies, including to fresh fruit and shellfish. She dines out only when she absolutely can’t avoid it. When she visits friends or neighbors, she brings her own food.
“I have to be extremely cautious,” Grenham says. “Fortunately one thing I’m not allergic to is wine.”
Armed with a glass of red and a box of gluten-free crackers, she can take on any challenge.
Mary Beth Schweigert is a Lancaster, Pa., newspaper reporter who covers health, food and other lifestyle topics. She previously wrote about new healthcare laws and celiac disease for Gluten-Free Living.