A look at the impact of diagnosis in children and older adults
By Amy Ratner, Medical and Science News Analyst
From childhood to late life, diagnosis of celiac disease is critical and should not be ignored. That’s the message for patients and healthcare providers from two recent studies.
In the first, researchers from Italy concluded that the number of patients with celiac disease worldwide is increasing, “thanks to better environmental conditions that allow children with celiac disease to survive longer.”
In the second, scientists from Finland and the United Kingdom found that one in four celiac disease diagnoses is made in people 60 years or older. Still, 60 percent of patients remain undiagnosed because their symptoms, including tiredness, indigestion and reduced appetite, are blamed on older age itself.
Though the studies are unrelated, taken together they create of picture of the implications of celiac disease throughout the span of life.
Child mortality rates and prevalence of celiac disease
“Our results show for the first time that the prevalence of pediatric celiac disease parallels the under-five mortality rate,” a study published recently in the Journal of Pediatric Gastroenterology and Nutrition,concluded.
Researchers from the University of Pavia reviewed 27 studies done in 17 countries that describe the prevalence of celiac disease in school children. Child mortality estimates for each of the countries were then compared to prevalence.
The proportion of persons in a population who have a particular disease at a specified point in time or over a specified period of time.
A measure of the frequency of occurrence of death in a defined population during a specified interval.
When the researchers looked at numbers from studies from 1999 to 2013, they found the mortality rate for children under five seems related to the prevalence of celiac disease in the general population. In developing countries where child mortality rates were high, celiac disease was less prevalent, while the opposite was true in Western countries, their study found.
The review only included studies in which children were screened with blood tests for celiac disease and diagnosed through intestinal biopsies. Researchers also considered genetics, gluten consumption and details on timing of gluten introduction and breast feeding.
In the last few decades, overall mortality and mortality from gastrointestinal infections have decreased considerably, according to the study. “This could have resulted in improved survival of [children with celiac disease], allowing them to be diagnosed afterward,” the authors wrote. They also suggest that fewer gastrointestinal infections, resulting from the way in which children in some parts of the world are protected from germs in the dirt, might also contribute to more celiac disease, a theory called the hygiene hypothesis.
They note that in the early 19th and 20th centuries, gluten-containing flour was added as an early milk modifier. Also, both beer and slops, a thin food made with the mash from malt liquors, were cheap alternatives to expensive cow’s milk. Children suffering from diarrhea were given barley water. In Italy, gluten-enriched pasta was popular and promoted as the ideal food for weaning children, especially those who had diarrhea, malnutrition and anemia. Production of the pasta ended in 1985. All these practices would have contributed to lower survival of children with undetected celiac disease.
A 1939 study showed the prognosis for children with celiac disease was dismal. Of 73 patients, 26 had already died at the time of the study and only 17 were still alive three years after diagnosis. Gluten had not yet been identified as the culprit in celiac disease, a discovery made by Willem-Karl Dicke shortly after World War II.
Prior to Dicke’s discovery, children with celiac disease would have had little chance of surviving and would not have been counted in surveys of those with celiac disease done 20 or 30 years later, the Finnish researchers note. Now, celiac disease is appearing in countries where it was nonexistent until a few years ago, their study said. “This is at least partially due to the better environmental conditions that nowadays allow a better survival of [children with celiac disease],” the authors wrote.
Celiac disease in older adults
Celiac disease is also being found more frequently in older adults, who often present with different symptoms than those diagnosed at an earlier age. Fatigue, constipation, anemia, osteoporosis and neuropathy are common and often dismissed as signs of “old age and of no consequence,” according to a study published in the journal, Alimentary Pharmacology and Therapeutics.
The absence of classic celiac disease symptoms delays diagnosis – in one case “an astonishing 50 years,” the study said.
“Some might argue why the diagnosis of celiac disease should be pursued in the elderly, especially when symptoms are only mild and adopting a gluten-free diet demands considerable changes in lifestyle,” the authors wrote.
They note that mild symptoms don’t equate to a satisfactory quality of life in older people with undiagnosed celiac disease. “Older people are increasingly unwilling to put up with ill health that might indicate celiac disease and are rightly demanding investigation,” said the researchers from Tampere University Hospital, Helsinki University Hospital and the Royal Derby Hospital.
Additionally, diagnosis can help prevent severe complications such as bone fractures and enteropathy-associated T-cell lymphoma, the study concluded. While the risk of lymphoma clusters mainly in elderly patients, the study said, evidence is mixed on whether it is greater than in the general population.
Patients diagnosed at an older age face some unique challenges in following the gluten-free diet, including a struggle to change lifetime eating habits, worry about the increased cost of food and difficulty getting it. However, most are compliant, researchers found. More than 90 percent show resolution of symptoms and improvement in results of blood tests that monitor celiac disease, the study also concluded. Recovery of the damage to the absorbing lining of the intestine is also good, though it occurs more slowly than in younger patients. Researchers based their conclusions on a review of existing studies related to celiac disease in the elderly.
The study advises healthcare providers to be on the lookout for celiac disease in older patients. “Old age itself should never be blamed for clinical features such as tiredness, indigestions, reduced appetite or anemia,” the authors wrote.
And they note that since life expectancy is getting longer, it’s likely the prevalence of celiac disease in the elderly will also rise.