<<Disclaimer: Verify this information before applying it to your situation.>> 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. >> >> Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC