Hopper first experienced one of his “sessions,” when he was 64. For seven hours he was vomiting, had diarrhea and felt excruciating cramping in his legs and feet. At times during this and subsequent episodes, the pain in his legs was so bad, he had to hold onto a door just to stand up. The vomiting always ended after bringing up bile that had leaked into his stomach. Delirious, weak and dehydrated, he would head to the hospital.

It wasn’t until he was on his way from his hometown of Ellicott City, Maryland to Boston for business that Hopper finally found out what was causing these excruciating bouts of poor health. After enduring a plane ride of painful symptoms, Hopper spent an hour and a half in the airport bathroom waiting to feel well enough to buy a return ticket home. While in line, he doubled-over in pain. After checking his vital signs, airport medics called an ambulance and he was rushed to Massachusetts General Hospital where he stayed for 11 days.

There he underwent a battery of tests – MRIs, CAT scans, blood work and more – just as he had during his other hospitalizations. Once stabilized, he began eating hospital food but his symptoms quickly returned. He was put on a liquid diet of Jell-O, juice and broth until the symptoms disappeared. After returning to regular hospital food and experiencing symptoms, which again went away on the liquid diet, something clicked with the doctor overseeing his stay.

A DNA test (Hopper is part of the 10 per cent of people who test negative to the blood test designed to detect celiac disease) and an endoscopy confirmed the doctor’s suspicions that this was celiac disease. After three days on a gluten-free diet, Hopper was much improved. He was released from the hospital and returned home to Maryland.

Growing Trend

According to groundbreaking research conducted by a team led by Dr. Alessio Fasano, the medical director of the University of Maryland Center for Celiac Research, Hopper is part of a growing trend. More and more adults are developing celiac disease quite late in life, and then being diagnosed with it.

For years, experts on the disease believed that such people had simply gone undiagnosed for many years of life, as celiac symptoms can be vague and are similar to symptoms of many other diseases. Alternatively, the theory was that they may not have even had symptoms, even though gluten was damaging their small intestines.

However, the findings, published online in Annals of Medicine in October, 2010, suggest that adults who are genetically predisposed to developing celiac disease may actually tolerate gluten their whole lives without a problem. Then one day, something changes and the body can no longer tolerate the protein, found in wheat, barley and rye – celiac disease has developed. For people like Hopper, this means re-learning everything you knew about grocery shopping, cooking, eating at restaurants or at friends’ homes.

Next: Findings a Bolt from the Blue

Of course, she did have to get her wisdom teeth removed, which wouldn’t be fun. But that was it. At least, it was until her pre-college physical with her family doctor this past June. That turned her world upside down.

Her mom, Lisa Fraimow, had asked the doctor to check for everything from vitamin deficiencies to antibody levels and her thyroid – the latter because Lisa was herself in remission from Graves disease, an autoimmune disorder that involves the thyroid. Marisa knew her mom was just anxious about her moving to a dorm nearly 200 miles away. Besides, she figured she’d be fine.

Blood test results showed otherwise. Marisa had practically no vitamin D, crucial for the development of healthy bones and teeth. What’s more, her system contained antibodies that indicate celiac disease, the hereditary autoimmune disorder in which the body virulently rejects gluten, a protein found in wheat, rye and barley.

Marisa couldn’t believe she had celiac disease – she felt fine. Tired, occasionally, but that was it. Now, on the cusp of college, she was already different from classmates she didn’t yet know. Her own body had turned against her.

Marisa had a version of celiac disease known as “silent” or “latent” – people with it have no symptoms that point to a disorder affecting the digestive system. In fact, some may have no symptoms at all. Yet, even in its “silent” form, celiac disease can take a toll on multiple organs with varying of degrees of severity. The long list of associated symptoms includes skin rashes, mouth sores, osteoporosis, infertility and even lymphoma, a type of cancer that affects the cells in the immune system.

Exact statistics on how many people are walking around with silent celiac disease are hard to come by but, as demonstrated in scientific literature, a whopping 10 percent of those closely related to someone with celiac disease may have it without suspecting a thing. “If you have celiac disease,” says Dr. Peter Green, founder of the Celiac Disease Center at the Columbia University Medical Center, “it’s important that your family get tested, too.”

***

BEFORE she was diagnosed, Marisa already knew about the presence of gluten in all sorts of foods, cosmetics and pharmaceutical products because her older sister Nadina, like so many North Americans, had eliminated the protein from her diet the year before. To support Nadina, she’d even done a senior class project on gluten-free desserts, creating recipes that included dark chocolate apple cake – her favorite.

But a crash course in the disease itself, one in the family of autoimmune disorders that also include multiple sclerosis, Type 1 diabetes and her mom’s own Graves disease, would teach this freshman a lot more.

Like how the rejection of gluten was causing damage to finger-like protrusions in the walls of her small intestine called villi, necessary for her body to properly absorb key nutrients like iron, folic acid and vitamins D and B12. Or how her slight fatigue could have been a sign all along. How the diagnosis is done in two phases: the blood screening and, if that proves positive, an intestinal biopsy. And how the only treatment is to go completely gluten-free.

Next: Going Gluten-Free

“Cinnamon buns,” Beth Ringdahl says wistfully when asked what food she misses the most. “I could make gluten-free ones,” the Vancouver management consultant adds, but her intonation says: they just wouldn’t be the same.

Like most most people diagnosed with celiac disease, Ringdahl has learned to watch what she eats like a hawk.

Foods containing gluten – a protein that gives grains such as wheat, rye and barley their elasticity – can make her very ill, spurring bouts of symptoms such as diarrhea or constipation, stomach cramps and bloating, chronic headaches and concentration problems that Ringdahl refers to as “brain fog.” The only treatment for celiac is lifelong avoidance of gluten-containing foods.

Although she was only diagnosed three years ago at the age of 43, Ringdahl appears to have been living with celiac disease since childhood. “I remember, as a kid, lying on the floor of the bathroom just in so much pain,” she says. The gastrointestinal symptoms later gave way to anemia, severe headaches and achy joints.

Ringdahl suspects that early damage left its mark on her body: she stands just over five feet tall, between six and eight inches shorter than her three sisters, none of whom has celiac.

Stunted growth is certainly consistent with the disease, which affects the tiny, finger-like projections called villi that line the small intestine and help to absorb nutrients. When a person who has celiac eats gluten, the villi become flattened, which greatly reduces the uptake of vitamins and minerals in food, and the result is malnutrition and often anemia.

Children with the disease typically have delayed growth and are very thin because their bodies aren’t getting the nutrients needed to grow properly.

The same malabsorption can delay puberty and may lead to fertility issues later in life. Ringdahl, for instance, didn’t start menstruating until she was in her late teens and she says that celiac-related infertility left her unable to have children.

Ringdahl had several of the classic symptoms of the disease. But there is a long list of possible signs, so those with celiac will not necessarily always have the same symptoms or experience of it. In fact, a 2003 study by researchers at the University of Maryland Medical Center found that as many as 41 per cent of adult celiacs are asymptomatic, meaning that they don’t have any noticeable symptoms at all.

There is one constant though: the need for those with the disease to adapt to life without gluten – a protein so ubiquitous that it is hugely challenging to avoid, in much the same way that dairy is one of the toughest food allergens to eliminate from a diet. On a more positive note, it is also common to find that a celiac diagnosis offers a new sense of control to a person who may have been long baffled by those varied symptoms.

For Marilyn Dion, the diagnosis came after serious illness. “About five years ago, I got deathly ill,” says Dion, a 54-year-old mother of three from Hamilton, Ontario. “Vomiting, diarrhea, severe headaches that wouldn’t go away – I was bed-ridden.” After several trips to emergency, doctors finally figured out what was wrong, to an extent.

After a biopsy to her lower intestine (the most reliable diagnostic tool for celiac) was positive for the disease, Dion cut gluten-containing foods from her diet. The results were almost immediate, and surprising: “Colours were brighter and more distinct, so obviously my vision had been affected,” she says.

“I could learn better, remember better and I had more stamina. It was like – whoa, new person here!”

But relief has not been complete. Dion has continued to experience bloating, fatigue and pain, prompting the doctors to add possible colitis and Crohn’s disease to her diagnosis. Both conditions, which affect the intestines and colon, are often associated with celiac.

“They still don’t know for sure,” says Dion, frustrated by the lack of answers. “I’ve had miscellaneous symptoms, but not enough to put me in the hospital again.”