The last thing Tom Hopper, then 65, expected to hear in late February 2008 was that he had celiac disease . But after enduring five months of frightening and inexplicable symptoms and being hospitalized five times, he knew something clearly wasn’t right.
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.
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 BlueFrom previous page
In the study, Fasano and his colleagues analyzed blood samples, questionnaires and clinical information from a group of more than 3,500 adults that was taken in 1974 and again 15 years later. What they discovered came as a bolt from the blue: twice as many of the participants had celiac disease as had the disease 15 years earlier.
This means people who had previously tested negative for celiac disease in their adult life, now had the autoimmune disorder. “That was a major and unexpected finding,” Fasano told Allergic Living.
Like any autoimmune disease, celiac disease requires two components: genes that make a person vulnerable to developing the disease, and a trigger. Since this study looked at samples from the same people, that takes out genetic variability. Also, unlike other autoimmune diseases, the trigger for celiac is known: gluten. However, since the findings show that some people are tolerating gluten for many years, there must be other changes or interactions at play.
Fasano has several theories, from the increased quantity of grains we eat to the early age at which we introduce them. However, he says one hypothesis stands out: “My personal opinion is that something in the composition of the bacteria in the gut, what we call, technically, the macro-bio, has changed in this time for these people and made them more susceptible to lose tolerance to gluten.”
Change in Gut’s Bacteria?
What would cause a person’s gut bacteria to change? He says these changes could be due to modern conveniences such as surgeries, vaccinations, antibiotics and genetically modified food. He also cites the hygiene hypothesis – the theory in allergy and asthma that we are too clean in modern society and our immune systems don’t get enough of a workout – as another possibility for being more at risk.
Everyone is different, though, so while Fasano says that celiac disease is the “final destination”, the changes in the body that get someone there will be different for each person.
The study also confirms earlier research that the incidence of celiac disease is on the rise: Fasano and his colleagues found double the rate, 15 years later. But it also sheds light on who the new people with the disease are: people over the age of 60.
This does not come as a surprise to Dr. Ralph Warren, member of the professional advisory board of the Canadian Celiac Association, as what he sees in his clinic certainly supports the new research. He cites the Canadian Celiac Healthy Survey which found that almost a quarter of people diagnosed with celiac disease are between the ages of 60 and 90. He himself has seen three patients diagnosed in their early eighties.
He says common symptoms  are diarrhea and weight loss (Hopper lost about 17 pounds in the months prior to his diagnosis). But even though the patients may go to the doctor to get checked out, when no infection is found, they are often told nothing is wrong and to simply live with their symptoms.
Next: Turning Off What Turns OnFrom previous page
Fasano hopes to gain more insight into why some people can tolerate gluten for so long in the hopes of one day being able to “turn off” the disease in patients like Hopper. “We’re really interested in understanding what kind of tricks these people who have tolerated gluten for so long have been using – so that we can use the same kind of tricks to restore this tolerance to gluten,” he says.
He also said that if can confirm that late development of the disease is related to the biological composition in the gut, it would be interesting to see if re-balancing the proportion of “good” and “bad” bacteria there might allow patients to regain tolerance to gluten.
Now, at age 68, Hopper says his diagnosis came as a relief. “What it really meant was that this was something that could be managed. It just required understanding what changes in life would be necessary in order to be healthy.”
But those two and a half years haven’t all been smooth sailing. While Hopper says foods labeled “gluten-free” are fairly easy to find, he has had accidental exposures to gluten, especially while eating out at restaurants. In fact, last August he had a severe episode that lasted nine hours and landed him in the hospital.
It was after that episode that Hopper and his wife decided it was time for him to become involved with a celiac expert, and he is now a patient of Fasano’s and takes part in research done at the Center for Celiac Research.
But instead of focusing on his diet limitations , Hopper is grateful for the wide variety of gluten-free foods that are available and his healthier eating habits, brought on after his diagnosis. He adds: “It’s not as convenient as what normally would be. But you know what? So be it, that is what it is.” Sound advice from a man who chooses to live with the disease rather than suffer from it.
First published in Allergic Living magazine.
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For information and resources on celiac disease, see the NFCA’s site – CeliacCentral.org 
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