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The Celiac Disease Confusion 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?

No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.

Photo: CC--Joelk75The “Common” Understanding

"Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]

Such an approach is highly imprecise and misses

  1. the need for distinction between non-celiac and/or celiac gluten sensitivity and
  2. the fact that a predisposition does not necessarily constitute disease.

The 2012 Internationally Accepted Definition

In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

…the presence of genetic, predisposing patterns…

and called for a

…distinction between "celiac disease" versus "gluten-related disorders"…[3]

Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.

Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity

Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.

Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.

Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.

Predisposition vs. Disease

A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]

In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.

An European Union et al commissioned research paper concluded:

The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!….

…Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to CD.[7]

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Big Business: Catering to a Gluten Free Diet

The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:

  • 18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.)
  • 9,689 on “gluten” (385 in 2012 – Jan. to Jly.)
  • 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.)

In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).

Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.


The Challenge

Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.

Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:

  • It may take years for new naming conventions to become accepted throughout the international medical and dietary community.
  • Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.  

In addition, future questions will arise as research identifies and confirms more genetic links:

  • Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles.

Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?

Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.



Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).

This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.

Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

[1]  Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?

[2]  Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.

[3]  Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease.

[4]  Curr Opin Gastroenterol. 2012 Mar;28(2):104-12.  Advances in coeliac disease.

[5] See future articles posted in these pages...  

[6]  Int Rev Immunol. 2011 Aug;30(4):197-206.  Important lessons derived from animal models of celiac disease.

[7]  J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi:  10.1172/JCI14344  PMCID: PMC209453  Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life.

[8]  Arch Pathol Lab Med. 2012 Jul;136(7):735-45.  An update on celiac disease histopathology and the road ahead.

[9]  J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33.  HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory? welcomes your comments below (registration is NOT required).

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6 Responses:

laura puckett
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said this on
31 Aug 2012 5:43:40 AM PST
I am glad to see that a "non celiac sensitive" possible diagnosis is considered. I was diagnosed with this in Italy but not accepted in U.S.A. Incidentally, my symptoms have almost disappeared and I gained 30# ( I was only 70# and kept losing). Also, many of my family were tested: my daughter, brother and first cousin have been diagnosed with celiac disease!

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said this on
31 Aug 2012 7:22:57 AM PST
The focus must be on gluten syndrome! Please investigate the brilliant and progressive work of Dr. Rodney Ford from New Zealand. After my 13 year old son tested negatively for celiac disease, his pediatrician actually told him to continue eating gluten until his villa were totally destroyed and therefore, he'd pass the celiac disease test. We pursued gene testing and found he has the gene for celiac disease... so thank god my son had the common sense to never eat gluten again. ALL his symptoms completely disappeared. Proactive prevention is the key to optimal health, safety and well being!

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said this on
13 Jun 2013 9:36:27 PM PST
What were his symptoms?

Shirley Braden
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said this on
31 Aug 2012 7:49:12 AM PST
Thanks for the discussion. I, for one, would like the see the definition of gluten issues expanded. Maybe the term will be another one like gluten syndrome, and there will be levels and one will be celiac disease. I think one vital piece of information is missing from your article though. 2 -3% of "gold standard," biopsy-proven celiacs do not have celiac genes. I personally know several individuals diagnosed with celiac disease who do no have the genes (or ones identified to date anyway). With experts saying that there are at least 3 million with celiac in the U.S. (stat from University of Chicago Celiac Disease Center), 2-3% is still a fairly large number. And if you are one of those folks who was told you did not have celiac disease because of lack of genes and no further testing was done, this fact may be critical to a diagnosis and your health.

Dan Marvin
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said this on
03 Sep 2012 4:16:41 PM PST
I suffer from both celiac disease and Crohn's disease and after reading the article, it almost seemd to imply that a 100% gluten-free diet might result in my Crohn's going away (160 auto immune related to gluten sensitivity), or at least into remission. If that is true, I would be very excited!

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said this on
05 Sep 2012 10:13:18 AM PST
To Dan - if you have Crohn's then you may want to look into the Specific Carbohydrate Diet. This was developed specifically for those with Crohn's. It is gluten-free, but it has further restrictions. Other similar diets are GAPS and the Paleo diet. All these diets focus on real food and avoiding inflammatory foods. Sometimes it takes more than just removing gluten to get to optimal health.

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