Celiac in the News, Gluten-Free Diet

Gluten-Free Diet Questioned In The New York Times

60 Comments 06 April 2010

Did you see this Q & A in The New York Times today?

I have no idea why they titled this Gluten & Gluttony. Am I missing something?

And the "answer" given made me feel like the author took a few quotes from a doctor that specializes in celiac disease and then twisted the "answer" to lead the reader to the conclusion that "there is no benefit to eating a gluten-free diet unless you have been diagnosed with celiac disease."

True, it has not been proven scientifically that a gluten-free diet benefits other ailments. And for the record, I  strongly encourage people to first try to get properly tested for celiac disease before going on a gluten-free diet.

However, I still had a few issues with the given "answer". I'm sure the author didn't have any ill intent when writing this "answer", but as we all know, there are still millions of people that have undiagnosed celiac disease or gluten sensitivity. Knowing this makes me feel that articles such as this one are downplaying these numbers and even subtly mocking people that are trying a gluten-free diet and claiming to feel better without an official diagnosis of celiac disease. There was no mention of other auto-immune diseases that could be associated with celiac disease, while celiac disease is often overlooked. Wouldn't a well rounded journalistic approach have been to mention this and also mention some of the shocking numbers of undiagnosed patients along with the scientifically proven fact that gluten-sensitivity, although not officially celiac disease, is just as much of a deadly danger? 

Speaking of gluten-sensitivity, remember when it didn't exist because it hadn't been proven scientifically?

I've personally met or communicated via email with many people diagnosed with different auto-immune diseases that haven't been diagnosed with celiac disease and have benefited from a gluten-free diet. Yes, these situations are considered anecdotal, not scientific. What about the woman that told me about how her vitiligo stopped spreading and her arthritis eased to the point of reducing her medication and the only thing she could attribute this to was a year of cooking and eating gluten-free for her husband's sake? Try telling her that is just a "placebo effect". 

Has anyone out there reading this benefited from a gluten-free diet without a diagnosis of celiac disease? I'd love to hear all about it in the comments.

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Your Comments

60 Comments so far

  1. 51
     
    DeannaS says:

    I tested negative for celiac, but my doctor declared me “gluten sensitive” based on my symptoms alone. I feel much better doing a gluten free diet. It’s only an anecdote when it’s someone else’s life being talked about.

  2. 52
     
    Tracy Haughton says:

    Why do so many doctors cleave to the narrow definition of “Celiac Disease” as if it were handed down from God? When symptoms abate when gluten is eliminated from one’s diet, why would an expensive and invasive biopsy be needed to “confirm” the diagnosis? Similarly, many doctors dismiss gluten as the source of a patient’s problems if that patient does not have the narrowly defined “genes for Celiac,” even when eliminating gluten eliminates symptoms.
    I certainly support more scientific research to understand gluten’s effect on the human body, but in clinical practice, doctors and other practitioners must pay attention to the evidence generated by people’s experience with eliminating gluten and put it into practice for the benefit of their patients. Several posters report doctors who are doing that–I wish the NY Times had given a platform to one of those doctors instead of this Mayo doctor who’s narrow opinion will cause many people to suffer for many more years before they discover that gluten is related to their symptoms.
    There is something in this Q&A article that reminds me of people who dismiss homosexuality because they claim it is a choice, which is utterly crazy given all the ramifications one must cope with when one is homosexual. Taking on a gluten-free life carries social, economic, and general all-around daily hassle ramifications, and one would not choose it unless it proved to be necessary for their health. Rather than casting doubt on the people who choose to take on these hardships, the doctor from Mayo should applaud them as taking responsibility for their health and take a professional interest in what he can learn from these earnest patients dedicated to their own well being.

  3. 53
     
    Tracy Haughton says:

    For an alternate point of view, look to another article the NYTimes today:
    http://consults.blogs.nytimes.com/2010/04/08/can-you-be-intolerant-to-foods-like-pasta/

  4. 54
     
    Jillian says:

    I never had any damage from gluten that could be seen with traditional sampling but later tested for gluten intolerance through IGG test. 3 months after going gluten free, my lactose intolerance disappeared. I lost 30 lbs in the first 6 months (after a life-time of never feeling at home in my slightly overweight body but never being able to control it, even when eating healthy and exercising). Now I am toned and in control. Gained more bowel control and problems with fistulas have decreased. Energy levels have doubled. Less depressed. Other allergies have decreased or shifted to more minor symptoms (like skin rash instead of GI problems). My mother just went GF 3 months ago although is not a Celiac– she reports higher energy levels and has a significantly improved mood.

  5. 55
     
    Fibrohubby says:

    My wife tried a gluten free diet to help with her Fibromyalgia symptoms, and it’s helped considerably (she’s never been tested for celiacs)

  6. 56
     
    Jamie Koonce says:

    It’s important to differentiate between confirmed celiac disease as evidenced by the presence of anti-gliadin antibpdies combined with abnormal endoscopy findings, versus gluten sensitivity. Both can masquerade as arthritis, fibromyalgia, headaches, thyroid disease, eczema, acne, and multiple other auto-immune conditions. However, gluten sensitivity is largely ignored by those in mainstream conventional medicine (insurance companies won’t accept the diagnosis as valid) much in the same way that other food sensitivities are discounted as being in the patient’s head. (Food allergies, on the other hand, such as anaphylactic reactions to strawberries and peanuts, are typically the only ones that are diagnosed through conventional food allergy testing.) It is possible that the MAJORITY of individuals worldwide have sensitivities to hybridized wheat and other gluten grains, meaning most people would benefit from a gluten-free, grain-free (or low grain) diet! In regards to eating for optimal health, mental clarity, and abundant energy, is the New York Times “behind the times”?

  7. 57
     
    glutensensitivegirl says:

    Poor journalism based on uninformed doctors, since there are studies–some very recent by leading doctors in the U.S. (Johns Hopkins), the U.K. and Italy–showing a definite non-Celiac gluten sensitivity. Yes, as someone pointed out in another post, it’s just like the fibromyalgia article they ran last year and then had to basically retract (actually, follow up with much more accurate coverage) because of the uproar.

    I’ve stopped listening to closed-minded doctors. Just because their science may not be able to explain the story fully and has not caught up with our reality, they have no right to make us feel like we’re hypochondriacs (or, as it says in the article, like it’s all in our heads/placebo effect).

    Yo, docs! It’s real — time to start doing your research and help us heal.

    Too bad there is no link for comments on the article.

  8. 58
     
    Matt P says:

    I never got an official diagnosis. This is mostly because doctors tried to push anti-anxiety pills, counseling, and other BS ideas on me for about 2 years without testing me. I had no choice but to seek help from a nutritionist (at Whole Foods, mind you) who said it could be a gluten intolerance right away.

    When I finally got a blood test the lab screwed it up twice, once for not testing the appropriate antibodies and about 5 months later for some unspecified reason. I have been off gluten completely for a couple years now and I have never felt better in my life.

    My doctors keep insulting me by implying that I could be confabulating the whole issue and that I should give up my diet for at least 3 months to get a “proper” diagnosis–a suggestion I followed for a week until I lost my job because I was bedridden.

    Don’t rely on medical diagnosis completely. Besides, there are many instances of false negatives and even Celiac patients with clear gastroscopies.

  9. 59
     
    Kristin says:

    Not to mention many pharmaceuticals have gluten in the binding agents or fillers. I am a naturopathic medical student and am learning a lot so far- many of the psychiactic drugs can be compounded- duh- why make a problem worse!

  10. 60
     
    Kathy says:

    You asked if folks follow a gluten free diet without a diagnosis of celiacs. I’ve had trouble getting a diagnosis, but looking at my diet, I’ve shied away from gluten containing foods most of my life, for example, preferring rice to pasta or soup to sandwich. All of my favorite/comfort foods are naturally gluten free. When I tried to eat a consistent diet of gluten every day I was almost bed-ridden with extreme abdominal pain, total numbness if the front half of my feet, extreme nerve pain and weakness in my legs, headaches, mental confusion and difficulty breathing, but the blood tests and biopsies were all negative. I do carry a homozygous DQB1*0201, so I know that I have a genetic predisposition. I decided a couple years ago that I couldn’t risk eating gluten in order to get the diagnosis and have seen tremendous differences in my health improving over time after going totally GF. The most frustrating part for me has been the lack of support in the medical community. I’ve been told that my issues may be mental by more then one doctor, including the gastroenterologist that did my GI biopsies; however, other people in my life confirm ~ sometimes grudgingly ~ that they can physically see a difference in my complexion/coloring when I’ve been exposed to gluten.


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Thanks for stopping by! I'm Kelly Courson and this is where I've shared my gluten-free finds since 2003. The world has been my gluten-free oyster for 14 years now and I love sharing what I've learned in order to help others adapt to a gluten-free diet. Have a look around and feel free to leave a comment. Connecting with people like you is what has kept me going this long! Seriously.
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