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Dear Friends,
> The Senior Editor at Slate responded to my email about that unfortunate 
> article: "Have we become too tolerant of gluten intolerance?".
>
> After reading his email I realized that he has no clue that CD is gluten 
> intolerance...and in slamming all the people who claim gluten 
> intolerance....he also slammed 2.2million people with CD. My letter today 
> tries to help him to understand what the truth means to that article...and 
> to his readers. See forwarded mssge below.
>
> Teresa

> ----- Original Message ----- 
> Sent: Monday, August 17, 2009 9:30 PM
> Subject: Re: Regarding your article posted July 28, 2009 on "Throwing out 
> the Wheat"
>
>
>> Hello Dan,
>>
>> Thank you for your response. I believe that I now understand the source 
>> of confusion. Please allow me to try to explain.
>>
>> You stated in your email (point 2) that "As a general rule, we know that 
>> Celiac Disease has disastrous long-term health effects.  The evidence on 
>> gluten intolerance is less clear." You further stated in your email 
>> (point 3) that "In fact, the WHOLE POINT of the article is that CD and 
>> gluten intolerance are different. "
>>
>> The confusion results from the fact that CD and gluten intolerance are 
>> actually not different. The most credible sources for information are the 
>> scientific journals, (e.g., Gastroenterology), which document research 
>> studies and advances in knowledge about CD. These sources state that CD 
>> "is also known as celiac sprue, gluten sensitive enteropathy and gluten 
>> intolerance".
>>
>> Another fact: Gluten intolerance is not a true "intolerance" in medical 
>> terms. Scientists have published that the term "gluten intolerance is not 
>> accurate" since intolerance implies a graduated response to increasing 
>> [gluten] intake..yet this is not the case with gluten intolerance/CD. It 
>> is all or nothing (like pregnancy). Given the scientific definition, the 
>> individuals to whom you refer that follow the gluten-free diet without 
>> medical basis cannot be said to have gluten intolerance at all.
>>
>> The article states "Still, it's worth pointing out that the G-free 
>> lifestyle can be very annoying-to friends, lovers, work-buddies, and 
>> anyone else who might have you over for dinner." While your article 
>> targets this statement against individuals who follow the gluten-free 
>> diet without medical basis.the fact that CD *is* gluten intolerance and 
>> requires a gluten-free existence means that this statement hits close to 
>> home for many who are suffering and may prefer not to be reminded of the 
>> inconvenience that they (too) are causing friends, family and coworkers. 
>> Holiday dinners, work functions, and restaurant nights with friends are 
>> wrought with challenges and (for some) the need to justify gluten-free 
>> needs for as a valid means to medical well-being. I know people with CD 
>> who refuse to eat out and/or travel due to the risks and fears of 
>> accidental contamination. These are not the people against whom you are 
>> speaking out..however, they have gluten intolerance and therefore 
>> interpret the article to be targeted to them also.
>>
>> Two items that I want to clarify from my previous email:
>>
>> 1. In 2003, Fasano et al performed the largest research study to date in 
>> North America. In 13,145 randomly chosen individuals, roughly 1 out of 
>> every 133 people was shown to have celiac disease (gluten intolerance). 
>> That is where my statement of "1 in 133" arises. If you divide 1 by 133, 
>> you get 0.007519. To take the math a step further to get percentages, you 
>> must multiply by 100. This equals 0.75% - the number that you provided in 
>> your article. To say 0.75% gives the reader the impression that "This 
>> will never happen to me or anyone I know/love."  My point here was that 
>> the prevalence rate is more staggering when you consider the number of 
>> people around you and realize how many of them may have CD (gluten 
>> intolerance) and are [in most cases] unaware of their condition.
>> 2. "Ruling out the official disease requires a gluten challenge, which 
>> means abandoning the G-free diet for a month and then going in for a 
>> biopsy. " Despite the fact that some doctors will initiate 
>> gluten-challenge against the advisement of experts, this does not ensure 
>> proper diagnosis nor does it "rule out" CD. For example, "patchy damage" 
>> is common in such instances and can be missed. Regardless, my point was 
>> to clarify that deliberately eliciting an autoimmune response to attack 
>> one's intestinal cells in order to assess the effects remains an ethical 
>> argument. Experts do not recommend this approach and advise against it 
>> for reasons of safety.
>>
>> I am unclear as to the objective of your article. Was it to poke fun at 
>> Hasselbeck for utilizing the GF diet as a means to lose weight.and for 
>> [apparently] boasting about it in her book?  Or was your objective to 
>> poke fun at people who jump off the dietary cliff like lemmings at every 
>> new nutritional plan that is claimed to provide weight control? To some 
>> of your readers (esp. within the celiac community), it appears that the 
>> objective of your article was to poke fun at people who hide behind a 
>> label "gluten intolerance" in order to claim "a special pass" of special 
>> treatment?  Given the latter.does the fact that celiac disease is gluten 
>> intolerance explain why people might be offended?
>>
>> I sincerely hope that this helps to explain my/our perspective. Having 
>> read your email response, I believe that you meant to provide a different 
>> message than that which has been received by readers with celiac disease 
>> (gluten intolerance). I wonder if you would be willing to make a 
>> correction to the article in order to clarify that your intent was to 
>> direct the article's message to individuals who follow the gluten-free 
>> diet for reasons of weight control, without medical basis? And that you 
>> support the many individuals living with celiac disease/gluten 
>> intolerance and its known impact on daily life. That would mean a lot to 
>> many, many people with CD/GI.
>>
>> Thank you for your time.
>>
>> Regards,
>> Teresa Van Nuland, Ph.D.
>>
>>

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