GF Jocks: Glenn Singleton and Kate Smyth

Top kayaker Glenn Singleton and Olympic marathon runner Kate Smyth were athletic ambassadors for Australia's Coeliac Awareness Week 2009 (featuring mascot MOJO, right).

Singleton [PDF] experienced fatigue, gastrointestinal problems, sporadic anemia, and nutritional deficiencies before his general practitioner ordered the tests that led to his diagnosis and subsequent adoption of a gluten-free diet. Since then, Singleton says, he has experienced improved well-being and improved his time by a whopping 15 seconds.

Smyth [PDF] says she improved her marathon time by nearly six minutes after getting the tests that led to adopt the gluten-free diet that relieved her lethargy, bloating, chronic anemia, and nutritional deficiencies.

Here's Glenn Singleton on the Australian morning talk show 9am with David and Kim.



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Celiac Disease Common, Not Rare

Here's a video from the University of Michigan Health System.



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CNN REPORT

Here's a YouTube video of Heidi Collins's substantial October 15, 2007 CNN Newsroom overview of celiac disease featuring Georgetown University gastroenterologist Dr. Aline Charabaty, who talks about the range of symptoms (which can include diarrhea, bloating, fatigue, anemia, depression, malnutrition, infertility, osteoporosis, joint pains, abdominal pain, neurological disorders, non-Hodgkin lymphoma, gastrointestinal malignancies, and weight and growth problems), the fact that celiac disease can manifest at any age, difficulties in raising research money, and the presence of gluten in many items including some pharmaceuticals.

I hope that week's other celiac disease coverage shows up on YouTube too.



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THE VIEW SPREADS THE WORD!

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.)


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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
infertility
miscarriage
depression
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....

BEHAR Duh!

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.

MEET ALICE BAST

Alice Bast is the founder and Executive Director of the National Foundation for Celiac Awareness (NFCA), which has become very visible in New York City in recent months. Just last weekend, the NFCA hosted the Winter 2006 Gluten-Free Cooking Spree in Chelsea and then became the honoree at a special gluten-free dinner at Centrico hosted by Redbridge Beer, attended by gluten-free celebs Heidi Collins and Elisabeth Hasselbeck, and blogged about beautifully by CeliacChick Kelly.

Like many of us, Alice only found out she had celiac disease after a long, drawn-out period involving many frustrating visits to doctors. As Alice herself puts it, she suffered diarrhea, fatigue, bloating, a general malaise, and the trauma of a full-term stillbirth as well as several early miscarriages. Her teeth began to deteriorate and her sister-in-law wondered if she had anorexia, though doctors often observed that she looked fine.

An interesting aspect of celiac disease is that, while the above-mentioned symptoms are common, the condition can be accompanied by symptoms that are markedly different. Or no symptoms might be noticed at all. That is why testing by a well-informed doctor can be crucial. Here's the NFCA on diagnosing celiac disease.

And here's Alice on Moms on the Move with Linda Swain.



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