Friday, May 11, 2007


If May is truly Celiac Disease Awareness Month (some have said it's October; I say it's every month), then this might be the worst Celiac Disease Awareness Month ever.

Recently there's been a lot of good coverage of celiac-related issues, but so far this month there have been at least two items in major media outlets that touch on celiac disease but miss the big (medically urgent) story:
Celiac disease affects an estimated 1% of the United States population--that's about 3 million people--but an estimated 2.9 million of those people remain misdiagnosed or undiagnosed. Furthermore, the average time it takes for a diagnosis is estimated to be about 10 years. That means that millions of people may be suffering the symptoms of celiac disease and searching for answers but not getting proper testing, diagnoses, and treatment, which would mainly consist of going on a strict gluten-free diet.
I already covered Tuesday's New York Times story, "Jury is Still Out on Gluten, the Latest Dietary Villain" and expressed my concern that the article neglected to mention the large number of undiagnosed people suffering from celiac disease while perhaps downplaying the fact that celiac diagnoses are a concern of informed mainstream medical professionals, not just "alternative" practitioners. I was afraid that the article might make gluten-free dieting come across as a mere fad rather than as a cure for millions of people who are overdue for medical diagnoses.

Yesterday NPR came out with another story that concerns me for similar reasons. Allison Aubrey's "For Most People, Gluten Isn't a Diet Enemy" is full of mixed messages, but its mix of gluten advocacy with tidbits about gluten intolerance does not acknowledge that most people who are clinically ill from gluten have not yet been diagnosed. One could go away from the article with the false impression that everyone who should be on a gluten-free diet is already on the diet, and anyone else is just being a faddist.

The piece opens with "You've probably seen them in the grocery store aisles: 'gluten-free' labels. Food manufacturers have added thousands of items in the last few years." Then it proceeds to celebrate the sheer goodness of gluten, especially as it applies to pizza-making Cornell food science professor Joe Hotchkiss.
Hotchkiss says it's the gluten that makes the dough strong and chewy. With its ability to hold ingredients together, it's no wonder it has been added to so many things....

Nothing is more inviting than the smell of baking bread. Hotchkiss says he loves the taste, and he can't imagine why anyone would choose to eliminate wheat, and therefore gluten, from their diet.

"For the average person who is not sensitive to this protein, there's no reason to avoid it," Hotchkiss says.

The exception, he says, would be people who are allergic to wheat protein or have sensitivity to gluten.
Oh yeah: There are those teeming millions.

The story then discusses how "evolving ideas about nutrition mean more people are experimenting with wheat-free diets." It says
The demand first came from people who have celiac disease, an autoimmune condition which requires sufferers to eliminate wheat from their diet.

But lately, there's been a segment of shoppers who are just curious.
And then the story ventures into fad-land.
These customers are looking to eliminate certain ingredients. When something like oat bran or sugar comes into the spotlight, some consumers build their diets around getting as much of the ingredient as possible or avoiding it completely. This may be part of what's happening with gluten now.

"It's rather interesting that the whole celiac disease problem has created a celiac fad diet," says Dr. Leo Treyzon, who specializes in gastrointestinal disorders at the UCLA.

About 2.5 million Americans are thought to have celiac disease. The prevalence is a little less than 1 percent of the population. The disease causes serious irritation and inflammation of the gut. For those people, avoiding gluten is not a fad. It actually stops the disease.

But Treyzon says a lot of other people are diagnosing themselves with gluten intolerance. And some report less bloating or stomach cramps on a wheat-free diet.

"If they feel better when they don't ingest gluten, there's no harm from doing that," he says.
Then the article mentions how difficult it is to stay on the diet, asserts that there's no reason for people to worry about poisoning from contaminated, and concludes with Hotchkiss and the glories of gluten.
Hotchkiss says the pet-food contamination may raise awareness of the need for inspections. But he says there's no need to fear gluten. It's not a dietary villain for most of us.

"I think the old nutrition advice is still the best," Hotchkiss says. "Eat a little of everything and a lot of nothing!"

And when it comes to pizza, Hotchkiss says he likes it best topped with anchovies and fresh mozzarella.
How falsely reassuring! It's true that gluten doesn't seem to be a dietary villain for most people, but it is a dietary villain for about 2.9 million Americans who may be undiagnosed despite the availability of reliable testing. Many of the people "trying out" gluten-foods may not be simply curious or faddists but actually be desperate to find a solution to symptoms associated with celiac disease.

So while NPR managed to reassure its listeners that they need not fear gluten, it squandered an opportunity to raise awareness that millions of Americans could actually benefit from testing for gluten intolerance.


Anonymous said...

Hi Marc
Also GF in NYC over here. My family just returned from the Walk in Queens - it was nice. Were you there by any chance?

Anyway, I too was offended by the NYT article. It regurgitated old 'news' as facts , and hinted strongly at faddism. Grr! As mom of two boys who were DX'd last month, I found it very frustrating that this consumer article is going to be the baseline for most people's awareness of celiac. A lot of moms asked me if I'd read the article and feel that having read it, they are now 'informed' as to what goe son in my household. NOT!!!!

I was a science major in college, and I do remember being cautioned to NEVER accept consumer articles as concrete fact. the NYT article is perfect example of that.

I don't know what NPR is, but that sounds annoying too. I am bookmarking your blog. Keep it going. HEIDI

Anonymous said...

oops sorry I mean hi David :-)

So May is celiac awareness month? It's also bike month, just so you know.

Heidi <--biking celiac caregiver

David Marc Fischer said...

Hi, Heidi. I didn't make it to the walk today, so I'm very glad to learn that you thought it was nice. I'm also glad to know that your boys have been diagnosed (as opposed to misdiagnosed/undiagnosed), so they're on the road to improved health. Happy Bike Month!