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
As always, I enjoy your level-headed replies to these periodic “celebrity” firestorms. I understand the indignant reaction from the gluten-free community. Many of us have had difficult health issues, compelling family stories, and ongoing problems associated with celiac disease and gluten-related conditions. It’s not something to mock and dismiss as baloney. But focusing so much energy and attention on silly people like Joy Behar is time consuming and can be counterproductive. Thank you for reminding us to celebrate how far we’ve come.
Peter Bronski says
Thanks, Melissa! I couldn’t believe the timing of it all … that such a study would come out the same week that Behar’s comment overwhelmed the celiac/GF media and community, and thus diverted attention from material progress. Even amidst her comments, you could see an acknowledgment from her and others on the TV program of the important distinction between those with diagnosed celiac disease and the broader gluten-free “fad” of the moment.
Oh my! I hadn’t heard about the comment and just viewed the video. Clearly this woman has no understanding of the difference between celiac and the GF fad nor does she have any idea of the scope of the disorder. Judging by his expression, I’ll wager the gentleman in the dark suit (I forget his name, sorry) had some very interesting thoughts processing while listening to her. She needs to be educated and educated in a calm and reasonable manner ~ not a public bashing by an irate celiac community, though the knee-jerk reaction is quite understandable. So, as you point out, science is definitely becoming more informed ~ hopefully, soon, the public will also be. Maybe it would be a good project for media 🙂 instead of spending so much time on things less worthy.
Peter Bronski says
Yes, Cindi, I think there are two important vectors of awareness. They have some overlap, but it’s not 1:1. There’s how celiac disease and those with celiac are received and perceived out in the world. And then there’s awareness and diagnosis rates among healthcare providers and patients. The former can influence the latter, but as we see with the case of Behar and the peer-reviewed studies I cited, you can have persistent misinformation in the mainstream media and yet growing awareness within a core group that matters more.
It’s just sad how behind the US is in diagnosing and treating and finding available foods for celiac disease. I’ve found that Behar’s comments seem to be the common opinion for a lot of people, because of dieters who believe gluten free diets are better for them or have weight loss benefits. Even doctors over here are reluctant to diagnose Celiac when all signs point to Celiac as the cause of the problems. Doctors will even disagree on the diagnosis. I think the only true test is the DNA test, and that has not become widely available through insurance.
Peter Bronski says
Diagnostics have improved greatly, but remember that DNA is not a reliable test for celiac disease. It can expose a genetic predisposition to developing celiac disease, but many people have the genetic markers yet never develop celiac disease. A blood panel plus intestinal biopsy remains the standard, though docs will disagree as to whether the biopsy remains the gold standard it once was, or if new lighter-touch forms of diagnostics are sufficiently reliable.
All I know is both my blood panel and biopsy were both unreliable and both my GI doc and family practitioner would not make the call. However, I’ve read that having any antibodies at all would usually be enough to diagnose celiac, and my biopsy showed inflammation and he even stated that it was probably related to a food issue but never discussed what food issue. Needless to say, I never received a diagnosis of celiac, but all the signs were there, anemia, severe abdominal pain, malabsorption, mouth sores, headaches, etc. I stopped eating gluten on my own and all cleared up. I had to receive iron infusions for the anemia, take large amounts of vitamin D, and give myself B12 injections to correct the deficiencies, but they haven’t come back yet. I guess it just depends on the doctor.
Mudr Barbara Tausova says
Dear Peter. Thank you for the article! The rising level of diagnosed people is trully a blessing. As here is written: “Not following the diet or late diagnosis of the disease can carry multiple complications with it. The most dangerous problem includes malignant tumours, which occur with approximately 10% of untreated celiac patients. ”
Maggie Hughes says
I am Coeliac and live in Bristol England ……. I too heard the news about the results from te study into the socioeconomic incidence of CD in children. Our news media announced that far more children in high (er) socioeconomic groups are being diagnosed than those in low (er) socioeconomic groups, inferring (to my mind) that having a reaction to gluten and avoiding it was a lifestyle choice. There was no discussion sadly.
However to me it reveals how more middle-class yummy-mummies are more able to insist on testing and resolution to their children’s typically guten-type symptoms and their children get diagnosed. Some of our GP’s are woefully hopeless/ignorant and pompous about the possibility of Coeliac Disease being the problem and offering tests and correct dietary advice. Patents in a low (er) socioeconomic group are less likely to have researched their child’s symptoms, successfully challenge their GP, persevere through until a diagnosis is received.
It seems quite wrong that patients, parents cares so often know more about just what certain symptoms could suggest…… they found out on-line etc. Why can’t GP’s be better at listening to ALL children and parents ….. what they are saying AND what they’re not saying …… use on-line info …… this would improve diagnosis and reduce the apparent view that Coeliac Disease knows no boundaries …. anyone could be Coeliac.