Wednesday, March 14, 2007


Today's much-anticipated View segment on celiac disease could mean a major improvement in the lives of many Americans. Thanks to the speedy work of the The View and the National Foundation for Celiac Awareness (NFCA), most of the coverage is already online via YouTube! (There's a little bit missing--I'll cover it in this post.)

Source (7:11)

This type of coverage is important and valuable because correctly diagnosing and treating celiac disease is a major public health issue in the United States. "As many as 3 million people in the United States have celiac disease but only about a tenth have been diagnosed, wrote Susan J. Landers in this American Medical News, referring to the findings of an independent panel of experts convened by the National Institutes of Health.

So how could more than 2.5 million Americans be unaware that they have celiac disease? Some of them were diagnosed with celiac disease years ago but incorrectly deemed "cured." (They might have been called "banana babies" because of the medical diet they were on.) Others may have been misdiagnosed or incompletely diagnosed by doctors who failed to test them for celiac disease, mistakenly thinking it too rare to consider. Testing for celiac disease with an informed physician is a relatively simple process, but because doctors underestimate the condition, it typically takes many years for patients to get correct celiac diagnoses after they first showed worrisome symptoms.

That was the case for View co-host Elisabeth Hasselbeck (left) before she got her diagnosis and then "came out" on The View last January, when the show's co-hosts spent about three minutes chatting about the condition. Today The View devoted more than seven minutes to the subject in its final segments, calling upon Elisabeth's doctor (and mine) Peter Green and NFCA founder and Executive Director Alice Bast to add their perspectives. Also participating (in the absence of Barbara Walters): special guest co-host Susie Essman, who says that her mother has celiac disease and who may or may not have celiac disease herself. (On The View, Essman said that she doesn't know whether she has it, but in March 2003 Alex Witchel of The New York Times once quoted her as saying "I was diagnosed last year with celiac disease. Yeah, you can say it, I can be the poster child for it.")

The intro to the show promised "Elisabeth's revealing her battle with celiac disease...finding out why it's easily misdiagnosed...and how it can lead to everything from infertility to cancer."

As you can see in the video, Dr. Green offered a mini-presentation during which he noted that the manifestations of untreated celiac disease can be very varied. The ones mentioned on this particular episode included:
bloating, gas, or adominal pain (may be misdiagnosed as IBD)
abnormal stool
irritability or behavior changes
fatigue [a very common symptom--Ed.]
itchy skin rash
intestinal cancer
I emphasize that the above are just some of the manifestations, because there are others--such as anemia and osteoporosis (notably among men), thyroid disease, and type 1 diabetes--that are quite common among people with celiac disease. Bast encouraged people wondering about themselves to take the Do I Have Celiac? diagnostic quiz at the NFCA website.

Dr. Green also showed how the gluten from wheat, barley, and rye causes atrophy of intestinal villi in people with celiac disease and explained that going on a lifelong gluten-free diet leads to healing for those people: "You have to be gluten-free your entire life. It's a lifelong diagnosis. If you get diagnosed in childhood or [as] an adult, it's for the rest of your life. Because as soon as you go back to gluten, you go back in that direction, flattening your villi." Or, as Bast put it: "A change in diet can change your life."

The genetic component of celiac disease also came up. Because close relatives of people with celiac disease are more likely to have the condition, it is a good idea for first- and second-degree relatives to be tested for it too. The standard diagnosis involves having blood samples taken while one is still eating gluten, then possibly following up with an upper endoscopy. Genetic testing can be useful in certain diagnostic situations, but there is currently no genetic test that, alone, will tell you that definitely have celiac disease.

There was a talk about foods such as cornbread and soy sauce containing the forbidden gluten--but just about anything (including cornbread and soy sauce, which is why clear labeling is so valuable) can be all right for the gluten-free diet depending on how the food is made. For example, the subject of a KitKat equivalent came up. I think Elisabeth cited Glutino Chocolate Wafers (and--I think mistakenly--said they were sugar-free). The closest KitKat equivalent that I've found is Glutano's Break Bar. (She said Glutino, I say Glutano.)

The show ended with some closing remarks not in the above clip. Rosie said, "Elisabeth, I think that was great that you talked about that 'cause, you know, it's been, you've had it for a while, right?"

Elisabeth said, "I have. And it took me so long to find out that I did. If I can just help someone not have six years of just hell before they find out....Especially kids, you know, they need more labeling on foods...and I'm going to try to do anything I can to get that fixed...."

Then there was this exchange between Behar and Essman (who had mentioned being on thyroid medication):
BEHAR (conversationally) You don't have it....

ESSMAN I probably do. I am doctor-phobic so I don't go get diagnosed....You know what? I eat the stuff and I feel bad and then I don't eat wheat and I feel good. So hello?

BEHAR It sounds like it's a little more complicated. It can cause worse diseases. You need to be diagnosed.

ESSMAN And my mother has it. And it's also connected to thyroid....


ESSMAN You know, I treat myself as if I do, and I don't eat the wheat.
That kind of exchange should sound pretty familiar to people in celiac world. My advice: If you think you might have it, consult with an informed doctor about getting tested. It typically all begins with a blood test while you're not on the gluten-free diet.

You know what I think would be interesting? Offering screening to anyone involved with The View and finding out what the results are.

In the meantime, here's the latest in the feud between Rosie and Donald Trump--this was also on today's episode.


Mondschein said...

Not to be too pedantic, Glutino does make a chocolate-covered wafer cookie that resembles a Kit-kat, as does Glutano. The hard part for me is finding them in NYC.

David Marc Fischer said...

You know, I think Fairway might have both. I'll keep my eyes peeled.

Catherine said...

Great analysis of the segment David! I posted it to the Delphi Forums so everyone could see it.

David Marc Fischer said...

Thanks, Catherine! And wahoowah!

Anonymous said...

What is the gene test Dr. Greene was talking about? I have heard of the antibody test, but that might not be so accurate for people who are currently eating a GF diet for health reasons. The gene test is supposed to be more accurate. If you know the name, please post it, I would really appreciate it, my doctors are so incompetent here in the Deep South...

David Marc Fischer said...

The gene tests for celiac disease look for the molecules HLA-DQ2 and/or HLA-DQ8. You can find an explanation at the website for Kimball Genetics, which is one of the labs that conducts such tests.

The genetic tests are neither substitutes for blood tests while off the gluten-free diet nor for a biopsy recent enough to show any damage that might have been caused by eating gluten.

Here is what you can basically learn from genetic testing, as I understand it. If you test negative, you are extremely unlikely to have celiac disease. However, if you test positive genetically, that only means that you have some chance of having celiac disease. That is why genetic testing is not considered to be definitive for a positive celiac diagnosis--you can easily test positive genetically but not have celiac disease after all. However, if you are reluctant to go back on gluten or have a biopsy at this time, genetic testing might help you and your doctor(s) decide what to do next. A lot of medical decisions involve putting together different pieces of a puzzle, so genetic test results from a recognized, responsible lab could wind up being considered as part of a bigger picture.

You can find a list of celiac specialists here.

I hope this information is useful to you. I've also covered the subject here, but please keep in mind that I am not a doctor, just someone who tries to keep up with the basics. If you want more information from Dr. Green, you might consider looking at his book.