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He did print accurate information, but I dispute his cause-effect
reasoning. This was my response to him:
First, thank you for at least printing accurate information about
celiac disease. If I didn't know better, however, I'd think your mag
gets funding from wheat producers. Have you been inconvenienced by
someone needing to avoid gluten? Your charts give the appearance of
science to the unsophisticated, but they cannot be used to establish
a cause-effect relationship and may be only coincidence.
You have helped to make life more difficult for celiacs, most of whom
have been accused of malingering more than once while trying to eat
safely. Family gatherings can be extremely difficult in this regard.
It has become easier lately, but that doesn't mean it's easy. Are
you aware that labeling laws, even the new ones, are not yet
stringent enough for celiacs to trust because actual gluten need not
be disclosed? ...that researchers have demonstrated that only a few
molecules, much less than a breadcrumb, can cause intestinal damage
to a celiac? ... that a substantial number of celiacs are
asymptomatic and that their doctors have difficulty getting them to
comply with a gluten free diet, even though they face substantial
health risks by not complying? ...that the diagnosis of celiac
requires that damage be done to the intestine, proven by a biopsy,
although the person may have symptoms for a long time prior to the
damage showing up in a biopsy? ... that a g-f diet heals the
intestine, which means that an untested celiac who goes on the diet
risks never getting accurately diagnosed, including some of those Dr.
Fasano tests, referenced in your article? ...that celiac is still
very much underdiagnosed, and that many people who have been
diagnosed with IBS are actually celiac? ...that many doctors are
still misinformed about celiac (having been taught the incidence is
1/4000), because there's no well-financed drug company "updating"
doctors on how to make use of their treatment?
You make the assumption that people fear the gluten bogeyman because
of the press coverage of celiac and the need for gluten free
foods. While there may be a few hypochondriacs out there fearing
gluten, my observation is that the opposite of your position is
true. For about the last 12 years, I've been on the celiac listserv
and monitoring online information. Early on there was little
accurate information anywhere but the celiac listserv
([log in to unmask]). Celiacs have to screen everything that
crosses or touches their lips - medication, toothpaste, lip balm,
beverages - no exceptions. There have always been people, even
without of knowing the term "gluten," who figured out that wheat was
making them sick and went in search of information. Many tested
negative but got sick again when they started eating wheat (and its
relatives) again. Even the experts had no explanation, but doctors
said not to eat what makes you sick while offering no help. The term
"gluten intolerance" used be synonymous with celiac, but recently it
has been used to describe this group as has "gluten
sensitivity." This has come about because this large and growing
group is asking for help and answers. My theory about the
coincidence with the Atkins diet is that people who went on Atkins
and were no longer sick probably went in search of the grain that was
causing the problem, since grains aren't allowed.
It came out on the listserv years ago that some doctors are unskilled
at doing a celiac biopsy and miss the damaged area of the
intestine. Some labs have a poor track record for processing biopsy
results, because some test results require subjective, rather than
objective evaluation. This information came from people who
supposedly tested negative but were still being made sick by
gluten. They were correctly diagnosed only after going to one of the
nationally-known experts or the Mayo Clinic. One woman actually
demanded that her biopsy samples be sent to another lab known to be
more experienced at processing celiac tests. Her results were
changed from "negative" to "positive."
Do you know that there's a theory that the timing of introduction of
wheat into a baby's diet affects the development of celiac? Not
everyone with the documented genetic predisposition develops the
disease, and there is new research being done to see if delaying the
introduction of gluten in susceptible infants can prevent the disease
process. Here is a link to the article, by Dr. Fasano, whom you
quote. Scientific
American:
http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights&page=6
I'm sending this to you directly, because I don't know if you read
all the commentary on your web site. You have tapped into a world
that is invisible to most people but one where maintaining health is
a real struggle. I hope that as a responsible journalist you care
about how your writing affects people.
(signature)
p.s. I love whole wheat bread, and I'd kill for a piece, but a
chocolate chip cookie almost sent me to the hospital a few years ago
(before I got smarter about this).
At 05:05 PM 7/30/2009, you wrote:
>After reading the posts about Daniel Engber's article "Throwing out
>the Wheat' in Slate, I was ready, as a long-time Slate subscriber, to
>fire off an angry missive....
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