How is the term "gluten grain intolerances" used differently from "gluten intolerance", and "celiac disease" or "gluten grain sensitivities" on this site?

Most celiac disease resources use the terms "gluten intolerance" and "celiac disease" interchangeably to refer to  biopsy diagnosed celiac disease.   Many patients use these terms more loosely.  They may mean celiac disease or  similar negative testing conditions.

In most literature villi damaged "Celiac disease" and "gluten intolerance" are used interchangeably. On this website we distinguish between "gluten grain sensitivities" and "villi damaged celiac/gluten intolerance" to avoid misdirection.  "Gluten grain sensitivities" are similar, unstudied conditions that may or may not be celiac disease.  In some cases, the sensitivities may be to something else in the same grains wheat, barley, rye and possibly oats, or to inappropriate starches,  fats,  missing enzymes or  improper grain preparation methods.  Since these hypotheses are unresearched, and removal of gluten grains brings relief in many cases, (sometimes in addition to other treatments) then regardless of whether gluten is  the culprit in every case, we label these  non celiac reactions  "gluten grain sensitivities".

The term "gluten grain sensitivities" as we define it on this website is an  umbrella including all the varied unhealthy reactions to  the gluten grains wheat, barley, rye and possibly oats. This includes IgE antibody mediated allergies.

"Gluten grain sensitivities is a cumbersome mouthful,but since most labels are already associated with diagnosable villi damaged celiac disease, we have chosen "gluten grain sensitivities" to  take the focus off "gluten" per se and "villi damge only" per se.  Eventually research may clarify these terms.

Hide: How is the term "gluten grain intolerances" used on this site?

Answer: 

 Unlike most "celiac disease" resources, this site focuses on:

a. Undiagnosed/celiac negative gluten grain reactivity, tests and relevant topics. 

b. The gluten challenge for celiac disease diagnosis - The risks and reasons patients undertake this procedure.
 

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A lay reader may access medical research articles free at www.pubmed.com.  Type "gluten intolerance" (or "celiac disease" or another food intolerance or condition)  and (name of the disease) in the search bar.  Examples:  CELIAC DISEASE AND DOWN'S SYNDROME  or GLUTEN AND HEADACHES. 

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• We need feedback from patients and all professional viewpoints, that focuses particularly on non celiac gluten grain intolerance, gluten challenge experiences,  psychiatric issues and anything else relevant.
 

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Resources to learn The Gluten Syndrome and celiac disease

a.   The Gluten Grain Reactivity Circle Diagram - an overview.

b.   The Gluten Grain Reactivity Primer - simple reference manual

      Gluten grain reactivity & celiac disease (Technical medical articles)

c.   The Gluten Sensitivity Brochure - published by the Gluten Intolerance Group.

d.   The History Section -  VITAL perspective on gluten grain reactivity.

e.   Audio Stories to Help Us Understand explain several medical processes in

      simple and entertaining format on the Testing page of this site.

f.    Animations of the celiac process and live videos of internal  procedures

      are at this website.

g.   NEW! May 2007  Medical Diagrams with audio and text explanation.

h.   NEW!  June 2007 Animations depicting the role of tight junctions and zonulin in intestinal wall cells are here.  This process is sometimes referred to as "leaky

      gut" and is thought to be involved in a number of adverse health conditions including allergies and intolerances.  Special thanks to Alba Therapeutics

i.    The Services and Vendors page - links to medical and support sites that specifically discuss the celiac disease subset of gluten grain intolerance, and the few sites

      known to recognize non celiac gluten grain sensitivities.

Hide:  Gluten Grain Reactivity and celiac disease

(*When a person stops eating wheat, barley, rye and sometimes oats for more than a few days, and then reintroduces these grains for weeks or months for testing purposes, this is termed a “gluten challenge”.)

Patients who remove gluten from their diets and experience improved health before celiac tests are performed sometimes choose later to undergo a gluten challenge (they eat gluten again for a specified length of time) thinking to confirm that they have celiac disease.  Usually these patients suppose gluten intolerance to be celiac disease.  They believe a celiac diagnosis will relieve social pressure and help them comply with the gluten free diet. This is a .particularly relevant issue to parents of young children.  They fear the  teen years, when most young people underestimate the consequences of "cheating" in social situations. It is tempting for a patient or a child's parents to trade a few more weeks or even months of discomfort, which often was previously endured for years before gluten was removed, in order to "earn" a lifetime diagnosis. These patients or their parents have already proved to themselves that they cannot consume gluten grains, so they are usually very sure they will receive a celiac diagnosis if they only "suffer long enough."  These patients also see a precedent of gluten challenges used somewhat routinely in research settings, so they assume that the discomfort is usually only temporary and in the long run a minor issue. They are not aware of the prolonged, disturbing consequences that some patients suffer from gluten challenges nor do they realize the low statistical chance (1 in 56) that their tests will be positive in spite of miserable symptoms during and possibly long after the challenge. Sadly, many of these patients who previously "knew" they could not eat gluten grains then second guess their bodies' messages if they receive negative test results.  Sometimes adverse effects may not appear immediately. The patients become confused and return to consumption of gluten grains, or they "cheat" frequently in both cases ignoring their body's clear signals.  In some of these cases their bewildering test results may mislead them into further possibly irreparable damage.
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To a patient educated only about celiac disease, the logic of a gluten challenge makes some sense on the surface.   Social pressure and emotional support are incredibly powerful influences, and the gluten free diet is a difficult lifelong commitment so a diagnosis of celiac disease is very helpful. However, when our daughter (a young nursing student) chose to try a gluten challenge we did not understand or take seriously enough the following vital information. Had we understood these points she would not have taken such an unnecessary risk.
 

1. Gluten challenges may carry as low as a 1 in 56₃ chance of positive celiac diagnosis even though the patient's history, symp