"celiac Disease - Sprue"

[Paul Jackson]

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Unfortunately, the awkward-sounding name of the article is not its only problem: Well, it may be true that celiac is "most common in Caucasians and those of European ancestry" ; but it's important (for journalists and publicists) to drive home the point that this disease affects people of all wheat-eating countries:

"[T]oday it is well known that celiac disease is a common disorder not only in Europe but also in populations of European ancestry (North and South Americas, Australia), in North Africa, in the Middle East and in South Asia, where until a few years ago it was historically considered extremely rare."

(S. Accomando and F. Cataldo, Dept of Pediatrics, Univ. of Palermo, Palermo, Italy. "The global village of celiac disease" in Digestive and Liver Disease, vol., issue 7, July 2004, pp. 492-498.)

In my opinion, however, an outstanding part of this article comes under the heading, Symptoms. It may not actually be a complete list of symptoms; for I recall that over 300 have now been found. But the list is long enough to give the reader the impression that this disease truly is a chameleon, and deserves serious attention!

[ENF]

Thanks for posting the article. This is quite something. It's the second Celiac article is as many days to appear in the New York Times - which means that millions more people will now be aware of it.

[Paul Jackson]

Thanks for posting the article. This is quite something. It's the second Celiac article is as many days to appear in the New York Times - which means that millions more people will now be aware of it.

You're most welcome! I'd like to clarify my comment about the list of celiac symptoms in today's N. Y. Times article. Of course, if there's any chance a person has celiac, the person should be screened for the disease, defined as the gluten-induced destruction of the upper gut's villi--regardless of the presence or absence of any other symptoms.

As I reflect on the N. Y. Times's task to educate the public with this article, some words of John Dewey came to mind, and I'd like to share them: "Education is a social process. Education is growth. Education is, not a preparation for life; education is life itself."

On one hand, the obvious reason we like a list of celiac symptoms being at least as long as in today's article, is, hopefully, to lead the reader to stop and think if s/he or a friend should be screened for it. On the other hand, a list so long gives the reader the impression that the disease does not (usually) have a silent presentation. It's fairly typical, however, that it only presents with iron-deficiency anemia and possibly an intolerance to dairy products. Thus, the complexity of this disease may stir a conflict in people's minds.

"Conflict is the gadfly of thought. It stirs us to observation and memory. It instigates to invention. It shocks us out of sheep-like passivity, and sets us at noting and contriving. Not that it always effects this result; but that conflict is a 'sine qua non' of reflection and ingenuity." (Dewey)

Well, stepping back for a moment, why would someone care to learn the material in an article like that in today's New York Times? Because doing so is "a social process . . . growth . . . life itself." It's also a concrete act in pursuit of our aspirations as human beings. Turning to Dewey again, "We cannot seek or attain health, wealth, learning, justice or kindness in general. Action is always specific, concrete, individualized, unique."

So, the individual reader may wonder how celiac can present with so many unpleasant symptoms in one patient and so few in another. "The symptoms of celiac disease can vary significantly from person to person" (N. Y. Times). People are by nature social, and will express concern for one another, comparing notes about health. But without a firm understanding of this disease, such sociability can interfere with making the determination that someone is a candidate for screening. "We can have facts without thinking but we cannot have thinking without facts." (Dewey)

Indeed, "[t]his is part of the reason the diagnosis is frequently delayed. For example, one person may have constipation, a second may have diarrhea, and a third may have no irregularity in stools" (N. Y. Times). This is an example of variability in GI symptoms. I'd hasten to add that it may or may not present with variable symptoms in the nervous, reproductive, and cardiovascular systems.

Though the list of symptoms is daunting, I certainly hope New York Times readers are taking this article seriously, and do not dismiss it as some sort of scare tactic. I've noticed that people who are newly informed about celiac will at first feel puzzled over its multifarious symptoms, which can cause real alarm in some people. To respond to such alarm, they then look for a simple way to understand the disease. "Arriving at one goal is the starting point to another." (Dewey)

Unless falling prey to the mistaken notion that the disease is rare, they'll quickly come to an understanding of its trigger, gluten. At this juncture, they are puzzled again because no other disease has diet as its treatment per se. And, no other autoimmune disease has a known trigger. I think it's worthwhile to counsel people when they've been introduced to these facts, which give a simple way to understand celiac that their minds may be naturally be longing. And I'd like to point out that even though these are well-established scientific facts, it's perfectly okay to be skeptical at first. "Skepticism: the mark and even the pose of the educated mind." (Dewey)

But, whether they've heard of the Atkin's diet, Oprah's cleansing diet, or the recent gluten-free fad, people new to celiac may then be prone to repeat whatever stuff they've heard about gluten. "Genuine ignorance is profitable because it is likely to be accompanied by humility, curiosity, and open mindedness; whereas ability to repeat catch-phrases, cant terms, familiar propositions, gives the conceit of learning and coats the mind with varnish waterproof to new ideas." (Dewey)

In our media-saturated culture, I don't think we should be surprised if someone new to celiac spouts references to low-carb diets or Oprah's diet. Perhaps one way to counteract this saturation is to warmly acknowledge some good exists in these fads. Then, someone who still wants to learn about celiac but is repeating catch-phrases, cant terms, or familiar propositions may be politely confronted with the question: Is Oprah, the late Dr. Atkins, or low carb mentioned anywhere in this New York Times article? If s/he seriously wants "health, wealth, learning, justice . . . kindness," the answer must be no. You may want to give a further response as follows, or in abbreviated form:

Thank you for answering no. That's an honest answer. Celiac has been carefully studied by scientists for 17 centuries--long before Atkins and Oprah, though I'd like to say she's also done some good work in publicizing the facts about this disease, which I'm afraid to say are massively misunderstood or unknown.

In the late second century, A.D., Galen, the Roman physician Galen, named the disease celiac, a word that originally meant

[Paul Jackson]

But my point is that since 1950, long before today's gluten-free fad, it's been known that the gluten contained in wheat, barley, rye, and sometimes oats is what triggers celiac, which is not a rare disease.