Global awareness about Celiac disease (CD) is growing—unfortunately, along with some rather unhelpful perceptions.
It doesn’t help that ”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.[i]
In an attempt to bring some clarity to the medical community, the world’s leading celiac minds recently met for an international convention in Oslo, Norway.[ii] 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.”[iii]
However, even this latest attempt at coordinating nomenclature bears several major flaws:
1) It will take possibly years for the new distinctions to become accepted throughout the international medical community.
2) Recognizing a term such as “gluten-related disorders” 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.
Additional questions arise:
3) “Celiac” is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins; much like a gasoline fueled car will not be confronted with diesel fuel.
A genetic predisposition to celiac only becomes a disease (e.g. celiac disease) if the body’s inability to digest gluten and certain other grain proteins is ignored.
In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a glutenfree diet (GFD) and lifestyle.
4) Some of the “celiac” patients, previously diagnosed with the typical celiac intestinal biopsy findings, on genetic testing turn out to carry “gluten-related disorder” and not “celiac disease” alleles.
Where does this leave them on the new “celiac disease” versus “gluten-related disorder” specter?
Moreover, where is the good intention for a more precise distinction? It appears that more work needs to be done ahead of defining medical terminology and disease pictures.
Until then, whenever one of my patients receives a positive gene test, I will adhere for now to the terms of non-celiac or celiac gluten sensitivity (NCCGS). 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.
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 glutenfree diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated conditions and disorders, both for non-celiac and for celiac gluten sensitive disorders.
Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?
Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.
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.