So, if you're reading my blog...you likely know that I'm a big dork ;).
I have an Android phone...and
I love it.
My husband would say I love it
too much.
I beg to differ ;). I argue with him that HE is on HIS Android phone more than I am, really! ;) I mean, after all, HE is the one who convinced ME to down load a weird game last night...Angry Birds. Come on!!! ;)
Anyway.
I have the Twitter app on my phone....on my home screen, actually. My PINK home screen ;).
Some of the people/things I follow include....Whole Foods, Gluten Free Works, Women's Health, Runner's World, and a few random friends.
Honestly, I don't "tweet" a whole lot...I just love to read the articles "tweeted" by some of the people/things I follow.
Especially the gluten-free-living and running ones!
Here's a recent article tweeted by Gluten Free Works that I appreciated:
The News Media, Gluten Free Diet, and Educating Yourself to be HealthyOne of the things that has been really bothering me lately is reading in magazines (Redbook, for example) about food allergies...and reading about how the GF diet is a "fad". Ok, maybe for some people it is...
But for those of us who have an actual medical condition, it is most definitely NOT a fad.
It's very interesting...and irritating, really...to me the number of people who run their mouths about things they really have no idea about.
I mean, I don't really expect people who don't have some sort of wheat or gluten allergy/sensitivity/intoleralce/Celiac Disease/etc. to GET it...not at all! It would just be nice if they wouldn't publish misleading articles.
Here's another article I recently found, thanks to Twitter...
Celiac and Gluten-Free Inaccuracies in the Media
Setting the Record Straight
By Kristin Voorhees, NFCA Program Associate
It seems that with each day, celiac disease, gluten intolerance and the gluten-free diet receive an increasing amount of attention in the media and pop culture.
Because celiac remains greatly underdiagnosed (experts report the latest undiagnosed prevalence to be 95%), any publicity or recognition in the news of this condition and its gluten-free lifestyle is generally welcomed. After all, awareness brings treatment that, in turn, brings improvement of the quality of life for those with celiac disease and gluten intolerance!
In the case of public relations, many would argue that, “there’s no such thing as bad press.” Unfortunately, in the case of celiac disease, this saying does not always hold true.
For those with celiac disease, the gluten-free diet is medical nutrition therapy and is the only treatment available. Consequently, it is not only important that gluten-free be taken seriously, but necessary, as well. And, with the field of celiac disease research continually growing and many new areas being studied, including defining and differentiating entities such as gluten intolerance and gluten sensitivity from the wide spectrum of celiac disease, we are learning that many other individuals also benefit from the gluten-free diet.
Given the increased prevalence of celiac disease and the expanding field of research, it is now more important than ever that the media accurately communicate information surrounding these topics.
While it is not unusual for celiac disease to be inaccurately discussed in the media, the frequency with which it occurs seems more frequent. This past month of August provided two examples, both nationally and internationally.
The Guardian, a UK newspaper, recently covered a story from Italy on the death of a gluten intolerant boy who was served a biscuit with his dessert. Given the gravity of this event’s outcome, it is expected that all details published surrounding this misfortune be accurate. Instead, this article is an example of the how the media often publishes misinformation regarding celiac disease.
I turned to Dr. Alessio Fasano, Medical Director of The University of Maryland Center for Celiac Research and NFCA Scientific/Medical Advisory Board member, to identify the misinformation within this article and suggest an explanation of what likely caused this young boy's unfortunate death.
“This is the typical example of terminology confusion as it concerns reaction to gluten. It is now well established that there are different forms of immune reactions to gluten that often are confused with each other even by health care professionals. Based on the press report, it is pretty obvious that the boy experienced an anaphylactic reaction to gluten typical of the most severe form of wheat allergy. These reactions are based on the response of the immune system through the production of specific immunoglobulins called IgE and the release of histamine that, in extreme cases like this, can cause sudden death. Conversely, celiac disease is an autoimmune disease that, like other autoimmune reactions, is mediated by the activation of specific immune cells that produce toxic chemicals (cytokines) that destroy tissues (in the case of celiac disease, the intestine). The role of antibodies (TTG antibodies that are of class IgA and, therefore, totally different compared to IgE) in the pathogenesis of celiac disease remains unclear. Because the long process of activation of cell-mediated immune reactions, autoimmune diseases, including celiac disease, never present themselves with acute reactions like the one experienced by the young Italian boy.”
Back in the states, NBC’s "Today" show featured celiac disease in a news segment with the network’s Chief Medical Editor Dr. Nancy Snyderman titled, “The Truth About Your Tummy Troubles.”
During this news segment,"Today" ran the following contradictory captions regarding the prevalence of celiac disease:
“More than 2 million Americans have been diagnosed”
“97% of people with celiac disease go undiagnosed”
The diagnosis of 2 million Americans gives the impression that there are an estimated 67 million undiagnosed. A very lofty calculation indeed! Of course, it is very likely that the network meant to announce that more than 2 million Americans are expected to have celiac disease, which is in fact true. But as the need for education and awareness about the autoimmune condition increases, so too does the need for truthful information and accurate statistics.
NBC also aired misleading information regarding the gluten-free diet as its treatment when Dr. Snyderman began her response to a viewer’s question, “My husband has just been diagnosed with celiac disease. Will he ever be able to eat wheat or gluten products again?” with “Well, it depends.”
Rather, Dr. Snyderman’s answer should have been a definitive “No.” This would have also been an apt time to emphasize that the gluten-free diet is the only treatment for a person with celiac disease. This should serve as a reminder that popular myths such as “celiac can be outgrown” and “people with celiac can tolerate a small amount of gluten from time to time” still exist.
These are important myths to dispel considering the complications of undiagnosed celiac disease, which include infertility, osteoporosis, development of other autoimmune diseases, and even cancer. Furthermore, diagnosed patients who adhere to a gluten-free diet and continue to ingest gluten, both intentionally and unintentionally, may develop serious complications of the disease including refractory sprue, intestinal adenocarcinoma, and enteropathy-associated T-cell lymphoma.
Of course it is important not to overlook Dr. Snyderman’s correct explanations that celiac is under diagnosed, it is “a sort of the disease du jour”, and that an endoscopy is often performed to confirm the diagnosis . Since "Today" is the top-rated morning show, Dr. Snyderman truly had a significant opportunity to provide valid information.Just two weeks prior to this segment with Dr. Snyderman, "Today" featured Health magazine’s Medical Editor Dr. Raj and her explanation of how the gluten-free diet treats celiac disease, including the significant effort required to uphold the diet.
What is the lesson to be learned?
Our efforts to increase the awareness of celiac disease are far from over. In fact, in some ways we are just beginning. In our current age of information overload, there is plenty of news about celiac disease and the gluten-free diet. Our task is to call out the correct from the erroneous, just as Shelley Case, B.Sc., RD. did last week following publication of a Wall Street Journal article entitled, "Giving Up Gluten to Lose Weight? Not So Fast.”
Shelley was one of the featured gluten-free diet experts quoted in the article, but helped to clear up misinformation regarding gluten-containing products that was included in the Wall Street Journal's story. The publication honored Shelley’s request for a correction, which ran four days after the original article had been published.
Just some food for thought! :) :)
