The other night, my friend Janice invited me to dinner. The catch: I could choose only Outback Steakhouse or Uno Chicago Grill. I have to admit, neither is my favorite.
When I asked why just those two choices, Janice’s answer was swift and firm: Because they serve gluten-free beer.
That’s how it is with Janice and others with celiac disease (CD) or gluten sensitivity. They quickly become experts on what and where to eat to avoid letting even a morsel of gluten pass their lips.
Just a little less than a year ago it was a completely different story for Janice. She was at her wits end with symptoms that included headaches, insomnia, fatigue, and–worst of all–frequent bouts of diarrhea.
Her M.D. suspected irritable bowel syndrome and sent her to a gastroenterologist. He immediately confirmed the diagnosis and wrote a prescription.
Out of frustration, Janice went to the Internet, did some research, and soon wondered if she might have a gluten sensitivity. As an experiment, she began to avoid gluten foods. Within a week her symptoms were dramatically reduced.
Today, Janice has what we call an infallible "gluten radar." Nothing crosses her plate without deep scrutiny. She knows from experience that letting down her guard can bring those symptoms roaring back.
So how did her doctor AND a specialist miss the diagnosis?
One of the probable reasons is that they don’t expect this hereditary disease to suddenly spring to life in older patients who have carried the gene for well over half a century. But it’s time to change that way of thinking.
Joint pain: arthritis or CD?
As I’ve mentioned before, celiac disease is an autoimmune disorder in which gluten (a type of protein in wheat, oat, rye and barley grains) obstructs absorption of nutrients in the small intestine. Untreated, chronic CD can lead to malnutrition, poor blood sugar management, severe gastrointestinal problems, and even cognitive decline.
In a new study from the University of Maryland (with help from Johns Hopkins and other research institutions), researchers analyzed blood samples taken from more than 7,800 subjects in 1974. A follow-up round of blood samples was taken from surviving subjects 15 years later–in 1989.
In 1974 the incidence of celiac disease was 1 in 501. The incidence in the same group in 1989 was 1 in 219.
But those new cases weren’t patients (like Janice) with undiagnosed Celiac disease.
Lead researcher Dr. Alessio Fasano, told NPR that the new cases came from the same subjects who were carefully tested for the disease. And this result was completely surprising.
Dr. Fasano: "We never expected that there were people who could tolerate gluten for 60, 70 years before getting celiac disease."
Most importantly, Dr. Fasano wants doctors to be aware that clusters of simple symptoms (diarrhea, fatigue, joint pain, etc.) should be checked out for CD, even in older patients: "It would be a travesty if you couldn’t play tennis or go skiing because you have joint pain not from arthritis, but from undiagnosed celiac disease."
For those who find themselves in this group of late blooming CD patients, and for those, like Janice, who come late to a diagnosis, it will be a huge challenge to kick gluten out of their diets. In addition to the four grains I mentioned above, gluten is hidden in many refined foods, such as soy sauce, low-fat and non-fat products, and even in some candies.
As you might suspect, there’s a website. It’s called glutenfree.com. It’s an online gluten-free grocery store, complete with recipes, a forum, and links to other CD sites.
Jenny Thompson is the Director of the Health Sciences Institute and editor of the HSI e-Alert. Through HSI, she and her team uncover important health information and expose ridiculous health misinformation, most notably through the HSI e-Alert.
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