Have you ever wondered how reliable the news you see on the television really is?
Now I know first hand that the media does not always get it right and can even leave out the most important news of all.
Let me tell you how …
For the last five years, I have worked to educate people about celiac disease and gluten sensitivity. I developed a website called Glutenfreeworks.com, which has helped tens of thousands get well and stay healthy living the gluten-free lifestyle.
I also edited and published the groundbreaking work, Recognizing Celiac Disease. This medical reference, authored by Cleo Libonati, RN, BSN has set the standard for identifying symptoms and their causes.
People use Glutenfreeworks.com every day to find new gluten-free recipes, how to get diagnosed for celiac disease, which restaurants serve gluten free food in their area and where to find information on local support groups. Our symptom guide, first published in Recognizing Celiac Disease, contains over 300 signs, symptoms, associated disorders and complications. From nutritional information to in-depth reviews of gluten disorders and the gluten-free diet, Glutenfreeworks.com provides medically accurate information to help patients and health professionals alike.
Last week I was given the opportunity to talk to ABC News in Philadelphia about gluten sensitivity, the gluten-free diet and how people’s lives are being affected by gluten.
When I sat down with ABC for a 20 minute interview on gluten sensitivity we discussed the following:
- • The seriousness of celiac disease and the importance of testing.• The increasing prevalence of celiac disease from 1 in 700 in 1950 to 1 in 100 today and that non-celiac gluten sensitivity reactions are estimated to affect 10 times that number.
• The difficulty in obtaining a diagnosis from physicians who do not have the information they need to recognize, diagnose or treat celiac disease and gluten sensitivity.
• The frustration when your doctor will not test you, telling you “you don’t have it” as my girlfriend, Rose, and I were told.
• How I recovered from acid reflux, chronic fatigue, anxiety, IBS and lost 25 pounds once I removed wheat, barley, rye and oats from my diet - 6 and a half years ago.
• How gluten causes gluten sensitivity reactions if it penetrates the lining of the intestine and enters the body. That these reactions may not be part of celiac disease, but are no less serious.
• How celiac disease is characterized by an immune reaction that causes damage to the lining of the small intestine and subsequent malabsorption of nutrients that can lead to health problems in any body system.
• How gluten sensitivity reactions can cause a wide range of neurological problems even without celiac disease.
• How if you try the gluten free diet on your own and see health improvements, you should demand to be tested within the first two weeks to rule out celiac disease.
• How the gluten-free diet is not a weight loss diet, although weight loss can and does occur for some people mainly due to decreased inflammation and fluid reduction.
• How the gluten-free diet is a sustainable diet that removes a trigger that can make you sick if you are sensitive to it, so you can get well and stay healthy.
• My main concern that the lack of physician education is allowing the same shift in focus from gluten sensitivity and celiac disease to the gluten free diet fad in the United States that has occurred in Europe and Australia.
I presented the producer with a copy of Recognizing Celiac Disease, explaining how it is being used to help health professionals and patients across the country and around the world to understand and treat this complex disorder. The cameraman recorded the book’s pages to show the links between nutrient deficiencies and the symptoms they cause.
As the interview concluded, I was ecstatic that people would finally be able to hear how gluten sensitivity is causing so many problems for so many people and steps they can take to get better. Finally, a chance to link in gluten sensitivity with celiac disease and the need for identifying and diagnosing people so they can heal and prevent the long term damage we see in celiac disease.
I was disappointed to watch the evening news and discover what the piece was really about… “Can the Gluten Free Diet Make You Fat?”
The producer used one sentence where I mentioned losing weight. She painted me as someone who jumped on the gluten-free fad, created a website and probably lost the weight from being low-carb - which I'm not. Ali Gorman, the on-air personality who I never met, referred to celiac disease as “gluten allergies.”
Well, gluten-free is not a fad, removing gluten from your diet does not make you fat and Glutenfreeworks.com has been providing people with accurate information since 2005 – long before gluten-free became popular.
Unfortunately, the producer was only interested in the weight loss angle. And just as in the recent report on autism and the gluten-free diet, ABC left out enough information to slant the "news" the direction they wanted.
And What about that Weight Loss Issue Anyway?
Here is what one woman wrote to me yesterday…
John, I haven't had a biopsy to give me a diagnosis of celiac but I went through EnteroLabs and got a gluten-sensitive diagnosis from them. I have chronic Lyme disease and was told by someone in a support group that most people with chronic Lyme end up having problems with gluten so that's why I got the test. By the way, my internist did a blood test that didn't show a problem with gluten, but she told me that the blood tests weren't always reliable.
As soon as I stopped eating gluten, in addition to not having as much bloating and discomfort, I got more energy and my thinking wasn't quite as confused. And as a bonus, I lost about 30 pounds in 6 weeks without trying. Since my Lyme doctor had told me I wouldn't be able to lose weight because of all the inflammation in my body due to Lyme, I was pleasantly surprised by the weight loss.
Like I told the ABC producer, decreasing inflammation can reduce fluid retention leading to weight loss. This can be a tip-off for people who go low-carb and lose weight fast to get checked for celiac disease.
The increased energy and clearer thinking were symptoms my girlfriend, Rose, told the producer. She also specifically stated her doctor refused to test her because she looked “too healthy.” That never made the news feature either.
The implications are frightening when you consider how much we rely on the "news" for our information. Any doctor who saw the piece would be reaffirmed that the patients who present them with symptoms outside the obsolete list they learned in medical school were imagining things.
What Does this Mean and What Can You Do?
You must be your own health advocate. You have to learn everything you can about gluten, gluten sensitivity and celiac disease so you can make sure you are getting the nutrients you need to be well.
If you have celiac disease, most of your symptoms are probably due to one or more nutrient deficiency. Most doctors will readily admit never receiving more than a basic education in nutrition in medical school. That is why we published Recognizing Celiac Disease, to increase the rate of successful diagnosis and treatment of celiac disease.
Until the media seeks out and reports the whole truth and the mainstream medical community realizes the impact gluten is having on society, millions of people will continue to suffer, physicians will continue to erroneously believe they know what is going on and billions of dollars in healthcare expenditures will go toward unsuccessfully treating symptoms instead of the underlying cause.
Just because your local news values sensationalism over the truth, doesn’t mean you have to stay in the dark.
And just because your doctor doesn’t understand celiac disease, doesn’t mean you have to suffer.
Educate yourself. Glutenfreeworks.com is a great place to start. Recognizing Celiac Disease is a great place to finish.
All the information you need to get well and stay healthy is at Glutenfreeworks.com. All the information you need to identify your symptoms and determine whether celiac disease is causing them and the nutrient deficiencies you need to get better is in Recognizing Celiac Disease.
---------------------- "Author Information: John Libonati, Philadelphia, PA Publisher, Glutenfreeworks.com. Editor & Publisher, Recognizing Celiac Disease. John can be reached at firstname.lastname@example.org."