FeaturesDec/Jan 2012 Issue

Senior Celiacs

Dive right in. Gluten free over 60 is worth it.

Senior Celiac

Photo © Fancy/Alamy

Four years ago, Gladys Glenn, then 66, had gall bladder surgery. In the months afterward, the retired medical secretary from Durham, North Carolina, noticed that her occasional stomach troubles—bloating and constipation—were growing worse.

“For a while, I blamed it on the surgery but it wasn’t getting better. Before long, I was having these horrible, gripping stomach pains. I was also extremely bloated—my stomach felt pumped up like a football. And it would churn and roll,” Glenn says.

Doctors ran several tests, including a GI series, but nothing looked abnormal. Glenn was told it could be irritable bowel syndrome and over the next few months she was prescribed a slew of medications, none of which helped.

Then Glenn developed an itchy rash over her knees and elbows. She typed her symptoms into an Internet search and the condition, dermatitis herpetiformis (celiac disease of the skin), popped up. As Glenn started reading about dermatitis herpetiformis (DH), she says it was eerie. “It was like someone was inside that computer, naming all of my symptoms.”

Glenn wasted no time getting back to her physician, but when she asked to be tested for celiac disease, the doctor shook her head. “You couldn’t have celiac disease,” she told Glenn.

“Overweight and approaching 70, I didn’t exactly fit the profile of a malnourished child suffering from celiac,” Glenn explains.

But after a lengthy discussion and a lot of insistence on Glenn’s part, her doctor eventually agreed to the test.

When results came back a week later, Glenn’s doctor was stunned and apologetic: tests were positive for celiac disease. She was soon diagnosed with both celiac disease and DH.

“In the past, the medical community thought of celiac disease as a disease of children. We now know it can affect anyone in any stage of life. It’s never too late to consider someone may be affected by celiac disease,” says Daniel Leffler, MD, MS, director of clinical research at the Celiac Center at Beth Israel Deaconess Medical Center in Boston, Massachusetts, where doctors recently diagnosed a 92 year old with the disease. 

Growing in Numbers

Rates of new celiac diagnoses are up at every age, in part because the medical community is doing a better job of diagnosing it, says Leffler. “However, those over 60 are a growing group that hasn’t received much attention until very recently.”

Research suggests that about 1 percent of the U.S. population has celiac disease, translating to about 400,000 adults over age 60, says Ronni Alicea, MBA, RD, a consultant dietician specializing in gluten-free diets in healthcare facilities, including nursing and long-term care centers.

“It’s unclear how many older adults have actually been diagnosed today but numbers will explode in the future,” she predicts.

That’s not just because of new diagnoses either. There’s a growing base of people diagnosed 10, 20 and 30 years ago who are now over 60, says Alicea. Some were even diagnosed as babies back in the 1930s, 40s and 50s, when it was thought you could outgrow celiac disease.

“I was a banana baby,” says Bobbie Hudson, 76, who was diagnosed in 1938. “At 18 months of age, after spending half my life in the hospital for what doctors called ‘failure to thrive,’ I was finally diagnosed.”

Doctors prescribed a diet consisting of bananas and a special buttermilk called Bulgarian buttermilk. For three years, that’s all Hudson ate.

“In those days, doctors didn’t link gluten with celiac disease,” she explains. “They also told my parents I’d outgrow it. By the time I started school, I was eating everything again.”

For the next 40 years, Hudson continued to consume a regular diet. She would suffer bouts of diarrhea every six months or so and discuss it with her doctors but they never paid much attention when she told them she’d been diagnosed with celiac disease as a baby.

“No one was looking for celiac in adults at that time. Even in children, it was considered rare,” recalls Hudson.

It wasn’t until 1984 when Hudson and her family moved from Delaware to Connecticut that a new doctor took an interest in her early celiac diagnosis. He sent her to a specialist who performed a biopsy and discovered she still had celiac disease. In fact, she’d had it her entire life and was never properly treated for it.

“I was really lucky,” says Hudson, who’d had four healthy pregnancies. Decades of untreated celiac disease have been linked to infertility, as well as osteoporosis, anemia, fatigue, the development of other autoimmune disorders and even some cancers.

When Gladys Glenn was diagnosed at age 67, she wondered how long she’d had celiac disease. Could it have just developed?

“It’s always hard to guess how long a newly diagnosed patient has had the condition,” says Leffler. “The feeling we get is most mature patients have had it for a long time, even decades, with chronic symptoms and something else—like a new or worsening symptom—prompted the diagnosis.”

Symptoms of celiac disease tend to shift over a lifespan, from primarily gastrointestinal ones in children (diarrhea, bloating, pain) to “atypical” ones in adults (fatigue, anemia, arthritis and numbness/tingling in the fingers and toes). Atypical symptoms can make celiac disease harder to spot, particularly if a person has other medical conditions that have similar symptoms, says Alicea.

But not everyone has been suffering for decades. New studies suggest it’s possible to develop celiac disease quite late in life. When researchers from Finland screened a large group of adults over age 55 for celiac disease in 2002 and then again in 2005, they detected several new cases during the three-year interval, indicating “that the disorder may develop even in the elderly,” they write.

Last year, celiac expert Alessio Fasano, MD, published similar results from a study conducted in the United States. Fasano reported that as people in the study aged, the incidence of celiac disease rose.

Still unanswered is why a person would develop celiac disease at 60, 70, 80 or even 90. There are theories on triggers, like changes in the intestinal bacteria, but they’re really just theories right now, says Leffler.

Slow But Steady

When Glenn started treatment with the gluten-free diet, it took the edge off her pain and uncomfortable bloating in a matter of days. But other symptoms persisted. In particular, her energy level lagged.

“When diagnosing older adults, I tell them it may take longer to get back on their feet,” says Leffler. “We warn patients that the dramatic turnarounds that you sometimes hear about after a celiac diagnosis—feeling like a new person overnight—aren’t typical for those diagnosed at an older age.”

Senior Celiac

Photo © Corbis Super RF/Alamy

Why? The intestines heal faster when you’re younger. “What may heal in weeks or months in young children could take years in adults,” says Leffler. “In fact, it may not ever get fully back to normal.”

Recent research led by gastroenterologist and celiac expert Joseph Murray, MD, found that just a third of celiac adults, average age 47, had completely healed intestines two years after their diagnosis. By five years, only two-thirds had healed.

“The goal is always to have complete recovery but we don’t know what it means for a patient if they don’t heal 100 percent,” says Leffler. “Having just 75 versus 100 percent healing of the gut is not well understood in terms of resolution of symptoms and nutritional needs.”

As a result, Leffler recommends regularly checking vitamin and mineral levels—especially iron and zinc, vitamin B12 and vitamin D—which are commonly malabsorbed.

Any symptoms that persist longer than expected need to be investigated further, he says.

In some cases, lactose intolerance, which is increasingly common as we age, may be responsible for lingering gastrointestinal symptoms. Over time, there’s a natural loss of enzymes that digest lactose, but celiac disease, particularly when it goes untreated, can exacerbate that process, says Leffler.

“By the time many mature adults are diagnosed with celiac disease, they’ve already pinpointed lactose intolerance as a problem and have cut dairy out of their diets,” says Leffler.

Unlike children and young adults, who can usually reintroduce dairy products once celiac-damaged intestines heal, mature celiacs may never be able to tolerate dairy.

Reassuringly, refractory sprue (a complex and poorly understood condition where a person previously diagnosed with celiac disease stops responding to the gluten-free diet) is rarely the cause of persistent symptoms. Although refractory sprue is associated with adult-onset celiac disease, it occurs in just 1 percent of celiacs, says Leffler. It’s exceedingly rare in children.

The bottom line: No matter the age celiac disease is diagnosed, the gluten-free diet is an effective treatment, says Leffler.

Success Through Support

Although senior celiacs may not face the gluten-filled challenges young celiacs encounter in school, camp, birthday parties and college, that doesn’t mean the gluten-free diet is an easy adjustment, says Alicea. A lifetime of dietary habits can be hard to break.

“I would be the happiest person in the world if I could still eat my favorite bread,” says Gertrude Caplan, 90. “As a child, I would skip dessert just so I could have a second helping of bread and butter.”

Caplan can trace her symptoms of celiac disease back to early childhood. Her mother used to give her a blackberry wine tonic hoping to ease her diarrhea and upset stomach. By the time doctors at the Mayo Clinic discovered celiac was the culprit, Caplan was 62 and too weak to get out of bed.

“I was only able to give up bread because I knew it would probably kill me if I kept eating it,” she says.

Although Caplan’s family and friends were supportive of her new diet, she was alone in managing it until she found a local support group.

“I never knew anyone with celiac disease until I joined the group,” says Caplan. “It’s become really important to me over the years.”

Support groups can be a lifeline, especially for mature celiacs, says Alicea.

“There’s an instant connection to people in the same boat. Many have been diagnosed with celiac disease for years and have accumulated a wealth of information about resources in the community–what doctors are best, where to grocery shop and where to eat out. It can be key in staving off feelings of isolation, a risk for many older adults,” says Alicea.

“Many of our local chapters are led by active seniors with celiac disease,” says Elaine Monarch, founder of the Celiac Disease Foundation (CDF). The CDF, Celiac Sprue Association (CSA) and Gluten Intolerance Group (GIG) all have local chapters with support networks.

Plan Ahead

Eleanor Pearce, 80, who was diagnosed with celiac disease 35 years ago, has been living in a retirement community near Baltimore, Maryland, for six years.

“Food was my top priority when I started looking at retirement communities. I had to be able to eat there,” she says.

Pearce chose her current home after learning that the assistant director of food service has celiac disease himself. Three other residents did, as well.

“It was wonderful to find a place where celiac disease was already so well understood,” she says.

In her apartment, Pearce has a small kitchen where she prepares her own breakfast and lunch. For dinner, she joins the other residents where six to eight different entrees are prepared every night. She is given a copy of the menu for the week ahead and when she’s uncertain—the gluten-free entrées are usually obvious to her—she checks with staff about which ones are gluten free. Typically, she has two or three choices each evening.

“It’s working out very well,” says Pearce.

Pearce’s experience would be comforting for Carolyn Evans, 71, who says her biggest concern is managing the gluten-free diet if she decides to move to a retirement community. She’s not alone, says Alicea. Giving up full, independent control over the kitchen is a big leap for those with celiac disease and food allergies.

Don’t wait until you’re ready to move to give it some thought, advises Alicea. Her mantra is to plan ahead. Visit family and friends already living in retirement communities and consider volunteering at one, too.

“You’ll not only provide companionship, you’ll gain an appreciation for how facilities operate. It’ll give you a leg up when working with staff to ensure food is safe for you,” she says.

When looking at prospective retirement communities, set up an interview with management and food service to ask some key questions:

Are they willing to make gluten-free food?

Discuss how proper preparation of the food (e.g., using a dedicated gluten-free toaster) is as important as the food itself, says Alicea. They may tell you they don’t want that responsibility. Others will say they handle special diets and food allergies all the time, no problem.

Are they already preparing gluten-free meals for other residents?

Obviously, this is a great sign, says Alicea. However, see if you can talk to those residents about their experience. Make sure they’re happy.

If the kitchen is new to the gluten-free diet, have staff handled food allergies before?

Many of the same principals of kitchen safety for food allergy apply to celiac disease. In fact, you want staff to treat celiac disease as seriously as they would an anaphylactic food allergy, says Alicea. Find out how they minimize cross contamination when cooking for residents with food allergies. Take a tour of the kitchen and see how clean it is. With procedures and training systems already in place for food allergy, the gluten-free diet should be easier to implement.

Are they willing to purchase gluten-free bread and other key staples?

Find out in advance how this will be handled. You don’t want to be surprised by added costs or the responsibility of having to supply gluten-free food.

Unlike facilities that provide skilled nursing and long-term care, which are bound by their licenses to provide the diet prescribed by your doctor, retirement and assisted living communities are not required to provide gluten-free food, says Alicea. If you’re having trouble finding a place that can accommodate your needs, contact your regional office on aging or use your local celiac support group as a resource.

Before moving, meet with your doctor and have celiac blood work done, says Alicea. That way you and your doctor can be sure your celiac is in good standing when you move in and can confirm it stays that way in your new environment.

Leffler suggests having celiac blood work done annually and anytime there’s a life change—whether it’s moving to a retirement community or heading off to college. He suggests seeing your doctor more frequently in the months after the transition, too. Repeat blood tests after six months, he says, just to make sure everything is going in the right direction.

Never Too Late

Alicea recently had a friend contact her out of concern that her father, in his 80s, may have celiac disease. However, he refuses to be tested. He figures, if he has a problem with gluten and he’s survived this long, it isn’t worth getting tested.

“You can never force someone to be tested for celiac disease or to follow the gluten-free diet,” says Alicea. “But what you hear most often from people, even those diagnosed reluctantly, is that they didn’t realize how badly they felt until they were diagnosed and treated with the diet.”

“It’s never easy to be told you can’t eat something,” says Gladys Glenn. “That’s true at 7 and at 67. I still miss certain foods—but I don’t miss the pains. There’s no doubt, I’m much better off today.”

Medical writer Christine Boyd lives in Baltimore.

Comments (4)

Great article EXCEPT there are no facilities listed where gluten-free food preparation is available. Finding senior living facilities is the problem. More detail about the "search" would be very helpful.

Also, where to write, who to contact, etc. about making the provision of gluten-free food available to Celiacs would be very helpful. There are thousands of us out there who need this service before we can settle into senior living communities. Like diabetics, celiacs need this medically necessary diet.

Posted by: TXEdie | June 15, 2015 5:20 PM    Report this comment

thank you for bringing this article to my attention.I like to feel like I have celiacs diseaseit seems like I have the DH more than anything else I also have a rash around my eyesand I did notice that when I eat pasta bread I seem to break out even worse with the rash around my eyesmy dermatologist says that it's rosatia but I don't believe it is rosatia because when I eat the bread &the pasta it just seems to make it worsethe next day sometimes it goes away if I stay away from bred and blue stuff

Posted by: Unknown | March 15, 2013 1:26 PM    Report this comment

I am looking at this article for research on a CNA project for school. I was a premature twin. We both had severe allergic reactions to food, and after the doctor had my mom put us on a gluten free diet all the symptoms of celiac went away. The doctor says that if symptoms come back (probably during/after pregnancy or mid-30s) that it is celiac disease. If it doesn't it was just side effects from being premature. Is it un-smart to not get tested and just wait for symptoms to occur? My mom thinks we should just wait, but after reading this article I don't know how right she is.

This article helped me a TON for my homework,


Posted by: Lmmosby | February 23, 2013 9:14 PM    Report this comment

GREAT article!
I have a question: In the second to last section, author writes,"...retirement and assisted living communities are not required to provide gluten free food..."
Is this true? I thought Celiac was considered a disability under the ADA...If my understanding about the ADA is correct, are these types of companies not required to comply with the ADA?

Posted by: sicl4015 | November 14, 2011 11:13 AM    Report this comment

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