Tuesday, May 08, 2007

NEW YORK TIMES ARTICLE

The New York Times (May 8, 2007) includes an article by Kate Murphy entitled "Jury Is Still Out on Gluten, the Latest Dietary Villain." I've got mixed feelings about it.

First of all, I want to go over some basics. As the article states down in its 13th paragraph (out of 24), "The prevalence [of celiac disease] in North America was previously estimated at about 1 in 3,000, but several studies published in the last three years indicate that it is closer to 1 in 100--and 1 in 22 for those with risk factors like having an immediate relative with celiac disease." The article quotes Dr. Peter Green as saying that "Chances are now that people actually know someone who has it."

But the article does not say something else that is true: Among the 1 percent estimated to have celiac disease, only a very low percentage--perhaps 3 percent--has been correctly diagnosed. That, to me, remains the big story: Nearly 1 percent of the population--from infant to senior--remains unaware that it has celiac disease. That is what I call a national health crisis.

Instead, the article focuses on people who go on gluten-free diets because they feel better on the diet (or think they might feel better on the diet) despite testing negative for celiac disease or not even testing for it at all. There's nothing in the article that suggests that going on such a diet would, by itself, be harmful. So I suppose the article comes across as part health article, part trend piece, and part marketing report (as it discusses the increasing availability of gluten-free products).

I'm not sure why I feel a little disappointed by the article beyond its failure to hammer home the existence of a real and quantifiable health crisis. But it might have to do with some of its phraseology. Here's a paragraph that got under my skin:
Nevertheless, it has become a popular dietary villain. Gluten-free foods are popping up on grocery-store shelves and restaurant menus, including those of national chains like P. F. Chang’s and Outback Steakhouse. Warnings of gluten’s evils are common on alternative medicine Web sites and message boards.
The use of the phrase "popular dietary villain" strikes me as inappropriate and not supported by the article. There's no statistic to show that the gluten-free foods are popular--and I don't think they are. Gluten-free labeling is actually increasing largely because people with celiac disease have fought long and hard for this reasonable practice. The sentence associating vague "warnings of gluten's evils" with alternative medicine could give readers the false impression that the warnings aren't also associated with mainstream medicine. And I think that the almost obligatory roll call of common substances that contain gluten--salad dressings, ice cream, peanut butter, adhesives on envelopes, and lipsticks and lotions--might've been better researched. Most if not all peanut butters are, to my knowledge, gluten-free, and I've been hearing that the warning against adhesives on envelopes might lack substance, too.

Another misleading sentence: "But with supermarkets brimming with gluten-free breads, cereals, cakes and cookies and restaurants serving gluten-free pastas, pizzas and beer, it has become far less difficult to stay on a gluten-free diet." I'd like to dare Ms. Murphy to show me supermarkets brimming with gluten-free baked goods. Not even Whole Foods qualifies. And as for restaurants serving gluten-free pastas, pizzas and beer? They're still very rare.

I do share the concern of quoted University of Texas gastroenterologist Dr. Don W. Powell that "A lot of alternative practitioners like chiropractors have picked up on it and are waving around magic silver balls, crystals and such, telling people they have gluten intolerance." A consultation with an informed gastroenterologist can be invaluable in diagnosing or ruling out celiac disease using a panel of blood tests possibly followed by an intestinal biopsy.

7 comments:

Rob said...

David -

Couldn't agree more with your post. The undiagnosed should be the big story here along with the untold wasted medical treatments and visits that are spent during the 9 years on average it takes for someone to get diagnosed.

Someone with the right credentials needs to quantify the true cost and publicize that information.

Rob

Michael Thorn said...

David-
Nice commentary on the NYT article. (How about sending it to the Times for publication..)
I have to say that I agree with your points and ....where are those store so full of gf products!!
One thing that went unmentioned is gluten sensitivity outside of diagnosed Celiac Disease. It is very clear that there are many people who do not have CD but do have a problem with wheat. That is not mentioned at all. The article implies that only persons with CD benefit from a gf diet and that all others are following a fad.
I think that this is also an issue that comes up with the recent study that found that children with autism are no more likely to have CD than the general population.
What no one has studied is what happens when children with autism are placed on a gf diet. There is certainly plenty of anecdotal material on significant improvement.
I did a lecture recently at Wild by Nature in Hampton Bays and a family came with their son who has autism. He was a very bright and articulate little boy. His mother told me that he had been violent prior to going gf. Now all the violent behavior is gone. I have also heard from patients about increased mental focus and improved behavior.
I think that there appear to me more and more reasons for people to try a gf diet. A wide range of symptoms seems to be ameliorated.
Sadly, there is an extreme shortage of funds for research in this area. Hopefully, over time, all the fundraising that we do will help.

Mappy B said...

I agree with your comments on the Times piece - I'm Brandi, the girl talked about in the opening sentence. There were many more things said in the phone conversation I had with the author that were not quoted. At the point where I am not with the GF diet, I will not start eating gluten again just to be tested. I know for a fact that gluten is what I'm allergic to, ANY time I've eaten anything with gluten (and some casein foods like yogurt), I've immediately felt miserable. It all started about 4 years ago. I also have a GF blog, which is how the author of the Times piece found me. It's glutenfreemappyb.wordpress.com . I have struggled staying on this diet for about a year and a half, much to the dismay of my weight gain and stomach problems. But good news, I have been 100% GF for two full months now, a record for me. I feel great and feel as if I won't 'relapse' - although non-gf cravings are hard (I say this as I chew hard gf bread now).

I hope you don't mind if I link your site today. Thanks! I LOVE your GF bread video, too funny and true!!! :)

Brandi (MappyB)
www.mappyb.blogs.com
www.glutenfreemappyb.wordpress.com

Alison said...

hi David,
I came across your comments today on both the NYT and the NPR stories. I also blogged about these disappointing "news" pieces.
I do suspect, and Brandi confirms, that the subjects of the story had more revelant things to say!

Patricia said...

Hi, David. I, also, agree with your comments on the NYT article. I think the problem was mis-represented. The undiagnosed are the real story. I was diagnosed a year ago at age 36. I now know I have had Celiac since 3 months of age when my mother started me on cereal and thus began a two year literal fight for my life. I nearly did not survive. However, I did survive to remain undiagnosed and to become diagnosed with type 1 diabetes at age 10. The following 26 years of being an undiagnosed Celiac with Type 1 Diabetes changed my life forever. I was unable to maintain control of the diabetes due to the effects of the intestinal damage and mal-absorption. I now suffer from serious eye and kidney disease and cannot have the child I always dreamed of having since I was a little girl. If I had been diagnosed with Celiac I could have maintained good control of the diabetes and my life would be vastly different now. In fact, if I had been diagnosed correctly as an infant with Celiac I would most likely not even have Type 1 Diabetes. I was bothered that the high incidence of Celiac and Type 1 Diabetes going hand in hand was not mentioned. The undiagnosed Celiac's have an awful load to carry for sure but the undiagnosed Type 1 Diabetic is losing years of life not to mention quality life that will never be regained. I told countless doctors about my symptoms through the years and all of them (except my current endocrinologist) could look no further then the diabetes. All of them diagnosed gastroparesis, another diabetic complication. If the undiagnosed Celiac population is a health crisis then the undiagnosed Celiac Diabetic population is out right criminal. Lives are being changed FOREVER as the years pass and the high blood sugars destroy more and more small blood vessels and organs. Do you want to talk about sick? Imagine feeling all the horrors of undiagnosed Celiac along with erratic blood sugar levels. Blood sugar levels bouncing from the 30's to the 600's. That is what mal-absorption does to a diabetic. The bouncing can happen 4-5 times a day, as well! The word must get out. The problem is deadly serious for ALL undiagnosed Celiacs. Articles such as this one only hampers all of our efforts to bring accurate information to the public. Of course, I cannot disagree with your opinion on the "brimming" shelves full of GF products at the grocery stores. I guess this is why I have to mail order practically everything I want that is GF in nature. I can find some products from the local grocery stores but I have to go to 4 different stores to get what I am able to find locally. Each store carries something the other's do not carry. Living GF can be easy... with alot of money, alot of work and a whole lot of time. Thank you for the chance to reply. I would, also, suggest, David, that you submit your reply to the NYT for printing. It was extremely well-said.

Anonymous said...

Very interesting posts and comments. Yes, I am late in the game on reading this blog.

Brandi - I am not a particularly newsworthy person but every once in a while I do get interviewed about my coachiing or sports or something. ALWAYS ALWAYS the facts get mixed up or skewed or misquoted. For no evident journalistic reason, either, most of the time. Also, many events which I have attended, and later seen written up, differ greatly from my experience of the same event. That is why when I read any sort of sensationalist news, a recent example might be the Floyd Landis case (not to get off GF topic), you really don't know who to believe when they include these "quotes" and opinions. They report the 'funnest' part of whatever anyone said.

All - yes the words 'evil" and "villain" almost come out as mockery, IMO. DEFINTELY they portray celiac as sort of a 'disease of the week', hysterical sort of alternative thing.

Heidi

David Marc Fischer said...

Thanks, everyone, for your comments--much appreciated!

Patricia, I'm touched by your letter. I'll see if I can do more coverage of celiac disease/diabetes. Hang in there --for a lot of people things get easier as they get more accustomed to the new diet, more products become available, more information gets around, and health stabilizes/improves. Support groups can be very helpful, too.