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Thanks to everyone who responded to my question regarding the widespread 
confusion between the terms: Celiac Disease (CD), Gluten Sensitivity (GS) and 
Gluten Intolerance.

In this summary, I am only including the info. I found most helpful and least 
confusing (some of which include my reactions to them) plus other books and 
videos that people recommended, for those of you who would like to pursue this 
further and continue your own education on the topics...and I conclude w/ a 
summary of this summary at the end.

I believe we all know what wheat allergy is and which tests confirm a Celiac 
Disease diagnosis, so I will not get into those here. My main issue was with 
“gluten intolerance” and “gluten sensitivity” and how they should be used in 
relation to each other and CD.

The most straightforward definition of “gluten intolerance” I’ve come across is 
from The University of Chicago Celiac Disease Center sheet (FAQ #2) which 
states:
“Gluten intolerance” is a generic term encompassing any adverse reaction to 
gluten ingestion, regardless of the mechanism involved: it includes celiac 
disease, wheat allergy, and gluten sensitivity."
 
I now personally visualize that “gluten intolerance” is like an umbrella term, 
underneath which is CD, GS and wheat allergy.
To read more, see: https://celiacdisease.net/factsheets

I would also like to add that I love the fact that their website is up-to-date 
to include this information. I did not find any mention of GS at the other major 
CD centers, yet think it’s an important thing to make people aware of. So often 
people receive negative test results for CD and then they dismiss any 
possibility that they might still need to be on the same G-F diet that Celiacs 
are on. So, kudos to The University of Chicago Celiac Disease Center for 
including this information! Hopefully other Centers’ websites will soon be 
updated to reflect this as well.

On the same note as above, Dr. Fasano is quoted in a below article to say, 
“Celiac disease and gluten sensitivity are subsets of gluten intolerance. Anyone 
who has celiac disease or gluten sensitivity is, by definition, gluten 
intolerant.” 

----------

The best explanation of gluten sensitivity (GS) is in this excellent article: 
“University of Maryland School of Medicine Researchers Identify Key Pathogenic 
Differences Between Celiac Disease & Gluten Sensitivity”
http://somvweb.som.umaryland.edu/absolutenm/templates/?a=1474&z=5

Included is this info: “The Center for Celiac Research estimates that 
approximately six percent of the U.S. population, or 18 million people, suffers 
from gluten sensitivity. This group reacts with some of the same symptoms as 
people with celiac disease, but gluten-sensitive individuals typically test 
negative for celiac disease in diagnostic blood tests and show no signs of the 
damage to the small intestine that defines celiac disease.”

So, essentially, people are said to have “gluten sensitivity” by means of 
exclusion — that their tests for Celiac disease were negative, yet they have the 
same symptoms of CD, and that the GF diet works to alleviate those symptoms.
-----

Listed next are some great articles that were brought to my attention:

1) Excellent research article: “Divergence of gut permeability and mucosal 
immune gene expression in two gluten-associated conditions: celiac disease and 
gluten sensitivity”
(There are excellent definitions of CD and GS in this article. No mention of 
gluten intolerance, which I assume to mean they see gluten intolerance to 
encompass both CD and GS, like the Univ. of Chicago said)
http://www.biomedcentral.com/1741-7015/9/23

2) Helpful article in NFCA news- “Gluten Sensitivity v. Celiac Disease- What do 
we know?” by Dr Vikki Petersen, DC, CCN
-First half of articles discussed differences between CD and GS.
-Included: Dr Alessio Fasano medical director of the University of Maryland 
Center for Celiac Research was quoted as saying in Scientific American: “Celiac 
disease and gluten sensitivity are subsets of gluten intolerance. Anyone who has 
celiac disease or gluten sensitivity is, by definition, gluten intolerant.” 

http://www.celiaccentral.org/News/News-Feeds/View-Research-News/Celiac-Disease-Research/134/vobid--2264/


3) I found this to be a very helpful article: “Celiac disease vs gluten 
sensitivity” by Tricia Thompson
This is a Q&A w/ Dr. Fasano, differentiating between CD and GS:
http://www.glutenfreedietitian.com/newsletter/dietcom-blog-celiac-disease-vs-gluten-sensitivity/


4) I found this to be a helpful article: “Celiac Disease VS. Gluten Sensitivity”
by Kristen M. Pardue, RD, LDN
http://naturallyfreerd.com/2011/03/28/celiac-disease-vs-gluten-sensitivity-part-1/

http://naturallyfreerd.com/2011/03/29/celiac-disease-vs-gluten-sensitivity-part-2/


5) Celiac Disease—Gluten Sensitivity: What's the Difference? By Ron Hoggan
I found this to be a helpful article, and particularly liked his summary.
http://www.celiac.com/articles/896/1/Celiac-DiseaseGluten-Sensitivity-Whats-the-Difference-By-Ron-Hoggan/Page1.html


6) I found some good info here:
FAQ re: Celiac Disease & Gluten Sensitivity by Dr. Kenneth Fine
(does not mention the word “intolerance”)
https://www.enterolab.com/StaticPages/Faq.aspx

7) Recent Wall Street Journal article: “Clues to Gluten Sensitivity” 
http://online.wsj.com/article/SB10001424052748704893604576200393522456636.html?mod=WSJ_hp_mostpop_read


My take: I found this to be a great article, MINUS the sentence in the middle 
that states: “Gluten sensitivity, also known as gluten intolerance, is much more 
vague.” It’s the only time “gluten intolerance” is used in the article, and this 
is the perfect example of how those two terms are used interchangeably and are 
confusing people.

-------
Other recommendations I received, some of which I have yet to see....

-”Dr. Tom O'Bryan talks much about this topic in many of his (mostly audio) 
interviews which are posted at this link:
http://www.thedr.com/index.php?option=com_content&view=article&id=27&Itemid=24
He also talks about GS and CD in great detail in both of his DVD's, located at 
the online store at the same site.  I'm attaching the most recent article from 
Celiac.com's Journal of Gluten Sensitivity, in which Dr. O'Bryan discusses the 
testing currently available and why it's so often wrong ~ until the recent 
announcements from Cyrex Labs. You can find lots of information about the new 
testing at his site, at this link:
http://www.thedr.com/index.php?option=com_content&view=article&id=21&Itemid=23”

-Recommendation for this dvd, which I have not seen, but have heard great 
things:
“Gluten Sensitivity and Celiac Forum 2010 DVD” by Dr Vikki Petersen
http://glutendoctors.blogspot.com/2011/01/gluten-sensitivity-and-celiac-forum.html


-See www.glutenreactivity.net  
I thought the “Primer on Gluten-Grain Sensitivities” PDF was helpful (esp. pgs. 
8-10, 15 & 18)

-Video by Wm K. Warren Medical Research Center for CD-
“Celiac Disease and Gluten Sensitivity” (uses term “gluten intolerance” 
interchangeably w/ GS so I felt that was confusing, yet there was a lot of other 
good info. on this video)
http://www.youtube.com/watch?v=AxBZ5E8Ilf8&feature=youtu.be&a

-Response: Dr Stephen Wangen does a good job explaining this in his book, 
“Healthier Without Wheat...A New Understanding of Wheat Allergies, Celiac 
Disease, and Non Celiac Disease Gluten Intolerance.”
http://www.amazon.com/Healthier-Without-Wheat-Understanding-Intolerance/dp/0976853795


-Response: “There's a breakdown of the differences between CD, gluten 
sensitivity, and gluten intolerance in ‘Living Gluten-Free for Dummies’ by Danna 
Korn (the book is very complex -- not "dumbed down" at all -- it simply has the 
"For Dummies" title because it's in that yellow and black series).”

-1 recommendation for this website:  
http://www.bettercontrolofhealth.com/10001.html

-1 recommendation for this video series from Glutenology: (I have not seen this)
http://www.glutenology.net/glutenology-health-matrix-free-video/

-Someone recommended Gluten Intolerance Group of North America’s publication 
called, “Gluten Sensitivity” (find it at: 
http://www.gluten.net/publications.php) 

Of everything I looked at, the was the most confusing of all. I hate to admit 
this, as I love most of what GIG does, and am a member myself, but based on 
everything I’ve learned since putting this question out there, this sheet needs 
to be updated. For example, in the upper right in bold letters it says, “There 
are subgroups of gluten sensitivity, including gluten intolerance and celiac 
disease.” when actually the first two terms should be switched according to the 
info. at the beginning of this summary. And gluten sensitivity and gluten 
intolerance are used interchangeably throughout which is confusing.
----
What we can do:
In order to help minimize confusion of these terms, I believe it is important 
that we all get on board and help end public confusion in whatever ways we can. 
If we can all start using the terms as defined at the beginning of this summary, 
I think it would really help clear things up for those people who are just 
starting to look into all of this, as well as reporters who might refer to 
information like the aforementioned publication. I believe that the more people 
can clearly understand what these terms mean, that it will help the general 
public to take the gluten-free diet more seriously, regardless of which type of 
gluten intolerance we may have.

Thank you all so much for sending the above helpful links and helping with my 
quest to better understand the terms in question. And thanks, especially, to 
those of you who plan on helping spread the word about this information. We 
really do have an awesome online community!

Sincerely,
Katie Chalmers


      

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