In case you missed it, last week comedian and TV personality Joy Behar called celiac disease “a bunch of baloney” in an insensitive, flippant, off-the-cuff remark during a television appearance. The reaction has been swift and fierce from the celiac disease and broader gluten-free communities—from bloggers like the always-outspoken Gluten Dude, to the Celiac Disease Foundation, to National Foundation for Celiac Awareness founder and president Alice Bast in a HuffingtonPost op-ed. This blog post it not another reaction to add to the list. Instead, it’s a re-direction.
You see, also last week—while the gluten-free world got (rightfully) hot and bothered about Behar’s comments—there were signs of real progress on the celiac disease awareness front. That makes Behar’s distraction all the more a tragedy, since it almost entirely overshadowed what should have been big news. A few major outlets including TIME picked up the story (with a misleading, incorrect headline, alas), but by and large it flew under the radar in mostly medical publications.
Researchers from the United Kingdom published a new study, “Socioeconomic variation in the incidence of childhood coeliac disease in the UK,” in the peer-reviewed journal Archives of Disease in Childhood, part of the BMJ publishing family. Behind the academic title of the paper is a rather startling and encouraging high-level finding: in the past 20 years (1993 through 2012), rates of celiac disease diagnosis among UK children have tripled. That’s worth repeating: among children in the UK, celiac disease diagnosis rates have tripled in 20 years.
It’s important not to immediately leap, as the TIME headline did, to assuming that celiac disease itself has tripled. In studies like this, researchers wrestle with three important variables:
- Prevalence – How many people in the population are living with the disease today?
- True Incidence – How many new cases of the disease will arise in the population over the course of the year?
- Reported Incidence – How many newly diagnosed cases of the disease will be reported in the healthcare system?
In most cases, researchers have data that deals directly with the reported incidence, and then they use careful modeling and statistical analysis to back-calculate the true incidence and prevalence for a disease. And that’s where the really encouraging news lies in this study. When discussing their findings and the increased diagnosis rate, researchers wrote that “the most plausible explanation … is that ascertainment of disease varies rather than the true occurrence of CD.” In other words, it’s not that more children are getting celiac disease; it’s that more children are getting diagnosed, which is a hugely positive sign for celiac disease awareness among healthcare providers and the general population, not to mention the health and quality of life of those living with celiac disease.
These findings are consistent with similar research published by some of the same researchers in the American Journal of Gastroenterology in early 2014. They found that during the 22-year period from 1990 through 2011, celiac disease diagnosis rates in the UK population broadly quadrupled. You read that right: celiac diagnoses increased 300%. And again, this substantial increase came down not to more disease but to more diagnoses. In the words of the researchers: “Thus, the most logical explanation for the significant increase in incidence of CD over time is that there has been a substantial improvement in the diagnostic ascertainment of CD over the period studied.”
So while some in the celiac and gluten-free communities have been lamenting that Joy Behar’s comments were a big step backward for celiac awareness, let’s also celebrate the huge leap forward in awareness and diagnosis.
Image courtesy of Kurhan | FreeImages