<<Disclaimer: Verify this information before applying it to your situation.>>

A recent posting (Sept 11, 09) inquired about the accepted figure for  
the prevalence of celiacs, asking,
  "... if it is still 1 out of 133 have celiac?"

I think this is an important question. Since no response Summary has  
been posted yet, here is an enlarged version of my replies to the  
original poster. --- I hope it generates some knowledgeable  
discussion by celiac professionals who participate in or consult with  
this listserv.

Marshall
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ANSWER:  No precise ("correct") figure on the prevalence of celiac  
disease/gluten intolerance can be stated.

While still widely cited by many celiac groups & organizations, the  
media, and on this listserv -- the 1 in 133 figure is no longer  
really appropriate. -- The best estimate (since 2004) of celiac/ 
gluten sensitivity prevalence in the US has been 1%, or 1 in 100 -  
but this needs qualification and explanation. So please read on.

In 2004, the NIH-NIDDK "Consensus Development Conference on Celiac  
Disease" held June 28-30, 2004, was the first comprehensive, NIH  
study of celiac disease.  It brought together the leading medical and  
clinical and research experts from not only the USA but from around  
the world, together with representatives of celiac support  
organization, and concluded a year long study by NIH of all known  
information and studies on CD.  Participants included many  
specialists familiar to Celiac Listserv readers.

I attended the conference, and have copies of the initial draft  
report - [no longer available] - issued during the conference. The  
final report (result of much revision and editing to satisfy  
conflicting points of view), is available on-line - see below.

The conference concluded that the most accurate estimate of the  
prevalence would be 3 million Americans, or [since the US population  
is just over 300 million], 1% (1 in 100) of the population, are  
affected by CD or gluten sensitivity, including those who are  
asymptomatic, and noted that only a tiny fraction of those had been  
diagnosed or are even aware of having a problem.

See:     http://consensus.nih.gov/2004/2004CeliacDisease118html.htm
and     http://www.nih.gov/news/pr/jun2004/od-30.htm

The complete report can be found (as a pdf file to download) at:
http://consensus.nih.gov/2004/2004CeliacDisease118PDF.pdf

NOTE: Complete video of all conference sessions and speakers,  
[allowing you to hear what experts actually said], can be found at
http://videocast.nih.gov/pastEvents.asp?c=1&s=221

Unfortunately, the final report changed the figure to a range  
estimate of 0.5% to 1%, i.e. 1 in 200 to 1 in 100.  Of course this a  
100% spread in the estimate, and didn't help.  Many participants felt  
that this was waffling and that the explicit 1% figure should have  
been retained.

This leaves the 1:133 figure in the middle, * but without any special  
validity *, and the 1% figure is the one currently (2009) most often  
cited by knowledgeable celiac sources.
------------
Here are some citations, documenting that 1 in 100 really is the best  
current estimate and should replace the 1 in 133 figure.
  ---  You can find many more such citations.

1. From:  NIH - NIDDK (National Institute of Diabetes and Digestive  
and Kidney Diseases) website:
http://celiac.nih.gov/
"Welcome to the National Institutes of Health (NIH) - Celiac Disease  
Awareness Campaign"

" Celiac disease is an immune reaction to gluten, a protein found in  
wheat, rye, and barley.  An estimated 1 percent of all Americans  
suffer from celiac disease, though many have never been diagnosed and  
are not receiving treatment."

2. From:  Nature Clinical Practice Gastroenterology & Hepatology  
(2005) 2, 140-147
http://www.nature.com/nrgastro/journal/v2/n3/full/ncpgasthep0111.html

"Celiac disease—also known as celiac sprue and GLUTEN-sensitive  
enteropathy—is a prevalent (1:100) food hypersensitivity disorder  
caused by an inflammatory response to wheat gluten and similar  
proteins of barley and rye."

3.  From:  ABC story, July, 2009:  which quotes Dr. Joseph Murray of  
the Mayo Clinic regarding his study reported in the July 2009 issue  
of "Gastroenterology Journal"
  http://abcnews.go.com/Health/WellnessNews/story?id=7988436&page=1
"Celiac disease now affects nearly one percent of the U.S.  
population, Murray told ABC News, but the vast majority of people  
living with celiac disease, do not know they have it."  [NOTE: This  
ABC story quotes Vanessa Maltin, Director of the National Celiac  
Awareness Center- and a well known contributor on the Celiac Listserv.]

4.  Unfortunately, even reputable celiac research organizations get  
it garbled. The "University of Chicago Celiac Research Center" gives  
contradictory figures on its website: http://www.celiacdisease.net/ 
assets/pdf/CDCFactSheets%20FactsFigures%20v3.pdf

For "Prevalence of Celiac Disease in the United States", it states

•  Celiac disease affects at least 3 million Americans." [ML note:  
current census population estimate is 304 million, giving incidence =  
0.99%]

"Celiac disease affects 1% of healthy, average Americans. That means  
at least 3 million people in our country are living with celiac  
disease - 97% of them are undiagnosed."

but it also states:
"• In average healthy people: 1 in 133" [0.75%]

Comment: Obviously, the Chicago Celiac Research Center editors failed  
to note they were reporting contradictory information.
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