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Fellow listmembers,

I finally read the CNN article that several listmembers have previously mentioned, concerning a young girl whose communion was "invalidated" by a gluten-free wafer (http://www.cnn.com/2004/US/08/19/communion.denied.ap/index.html).

I'm not going to comment on the anger that I feel on learning that the church is ostracizing a young girl based on her health needs.  What I would like to draw to your attention is how CNN portrayed the story in their article.

Several times in the text they refer to or hinted at Celiac as a "rare" disease.  Most of you know that Celiac is not a rare disease.  In fact, Celiac is FAR more common than most diseases that Americans know by heart (no pun intended). The problem is that Celiac is very underdiagnosed or misdiagnosed.  Sadly, many medical professionals do not even understand the basics of our condition.  Moreover, most Americans have never heard of it.  They assume that "gluten-free" is some kind of health fad akin to low-carb diets.

This attitude may be changing, but I think that it is important that we continue to encourage reputable sources, such as news agencies like CNN, to talk about Celiac in an accurate manner.  With that in mind, I wrote CNN a brief comment email on the article.  The text was as follows:

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In regards to your article entitled "Church says girl's Communion not valid," I would like to offer a few comments.  First, let me say that I have been successfully treating the condition mentioned in the article--Celiac Sprue--for over twenty years.  And second, I have experience both as a scientist and as a medical professional, so my experience exists on two levels.

Recent reports in prominent medical journals such as JAMA indicate that the actual incidence of Celiac Sprue is one in 150, if not higher.  To put this in perspective to the article:

-Approximately one in every 400 children has diabetes (NDIC)
-Approximately one in 700 children suffers from Multiple Sclerosis (NIH)
-Approximately one in 66,000 children is diagnosed with serious cancer (NIH)

Although these statistics may be debated, the overall point is such: Celiac Sprue is NOT a rare disease.  It is merely a disease that is poorly understood and seriously underdiagnosed in this country.  The fact that thousands of people--including children--are suffering and perhaps dying from Celiac every year is inexcusable.  I would encourage prominent news organizations such as CNN to promote Celiac Sprue as what it is--a very common disease that is not-so-commonly known.  You could stand to benefit many people by doing this!

I would be happy to provide additional information.  I encourage you to do a follow-up story on Celiac Sprue and could provide the names of other reputable sources of information on this topic.

Many thanks
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I think that if we are proactive about these kinds of incidents, we could help to inform the public about Celiac AND help many suffering people in the process.  So, if you get the chance, please drop a note to CNN (via www.cnn.com) and ask them to do a follow-up story on Celiac to clarify this communion blurb.  I do not want Americans to see Celiac as some sort of medical anomaly that is creating unwelcome hassles for the church.

In good health,
Jessica in Madison, WI

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