One of the things that Pat and I have run into through the years that we have been publishing the Elegantly, Gluten-Free website has been the general confusion that exists concerning gluten-related disorders associated terms. I’m happy to report that a consensus has been reached in that regard among recognized experts in the gluten field.
This article summarizes the information in the report produced by the expert panel in what is hopefully easy to understand American English. This will give everyone who uses ElegantlyGlutenFree.com a common reference as to what is meant when we use various terms and classifications in articles and posts.
The Consensus Report
The process to arrive at the consensus began in 2011. At that time 15 scientists, all recognized experts in various parts of the “gluten issue,” began to work together to standardize terminology as well as classification of the different diseases and processes which appeared to be associated with the group of gluten-related problems.
In a report published at the end of last year (October, 2012) by BioMedical Central, a consistent, universal terminology and classification system was developed by this panel of 15 experts to be used when dealing with gluten-related medical/scientific issues.
Since the publication of that report, I have seen no counter reports and no published arguments against the nomenclature and diagnostic classifications presented by the report. Therefore it is my assumption that the consensus report has been generally accepted.
So, with one exception which I will discuss below, Pat and I are going to assume that, for the purposes of this and all future articles and blog posts on this site, the specification in the Consensus Report is now the de facto standard for terminology and classification related to gluten-associated disorders and science.
The formal, published name of the Consensus Report is: “Sapone et al.: Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine 2012-10:13.” Elegantly, Gluten-Free has permission to republish the report and you can find it under “Articles” in the sidebar column or by clicking the name of the article in the previous sentence.
Please note throughout this post, I use the terms “biochemical” or “biochemical testing.” I use these and related terms as a convenience. If you wanted to be technical about it, the testing that is done runs the gambit from genetic testing through serological and skin allergy testing.
If you wish to know the specifics on any given use of the terms, please refer to the Consensus Report where it covers whatever it is I’m talking about when I use the term. I am doing this because most people won’t know much about the different tests anyway. And, I think that doing so makes this article easier to understand.
We have published the entire Consensus Report, with permission, on the Elegantly, Gluten-Free website. <Click here to read the entire consensus report.>
Gluten related disorders have now been put into three classification groupings:
- Autoimmune Disorders, which include celiac disease, gluten ataxia and dermatitis herpetiformis.
- Allergic which contains only wheat allergy. And,
- Gluten Sensitivity which has the symptoms of celiac disease, but does not exhibit either the intestinal lining damage or the biochemical markers of celiac disease.
Elegantly, Gluten-Free Term Policy Statement
Term: Gluten Intolerance
Here at the Elegantly, Gluten-Free website, as well as in any books or other publications that I or a member of my staff write, I will use the term “Gluten Intolerance” when referring to autoimmune disorders triggered by gluten molecules or their fragments…
… We will also generally use the term “Gluten Intolerance” to cover Gluten Sensitivity as well as Wheat Allergy related information and issues.
If you are Gluten Sensitive or have a Wheat Allergy, treating your condition in all situations that I am familiar with, as if you are Gluten Intolerant, as defined in the first paragraph in this warning, should help you achieve the appropriate result. Of course, ask your physician whether this is correct for your personal medical or health-related situation.
I am doing that because, quite frankly, it is too inconvenient to continually say “gluten-related autoimmune disorders” or “gluten intolerance, gluten sensitivity and wheat allergy” or similar statements every time we talk about something that applies to more than gluten intolerance or gluten intolerant. And it will lead to confusion among our readers and visitors because of the common usage of the terms “gluten intolerance” or “gluten intolerant.”
In the event that there is a statement that I make about the gluten intolerance or gluten intolerant condition that I do not believe applies to both gluten sensitivity and wheat allergy, I will state the fact. And, the same rule will be applied to statements about gluten sensitivity and/or wheat allergy, if I use them individually.
First, let’s talk about autoimmune disorders.
Just what is an autoimmune disorder?
Basically an autoimmune disorder is a disease process in which your body incorrectly attacks itself. Examples of autoimmune disorders would be arthritis, lupus, and celiac disease.
In celiac disease, there are three further sub-classifications. They are:
Celiac disease is actually diagnosed biochemically and through biopsy of the lining of the small intestine. As most of you know, there are over 100 symptoms that are exhibited by celiac disease. Much of the notoriety of celiac disease comes from that portion of the celiac population who present with intestinal symptoms, such as bloating, cramps, diarrhea, and, of course, vomiting.
If you have symptoms that you think are being caused by celiac disease, PLEASE, PLEASE see a physician and get tested. Unfortunately, many of these symptoms are also presented by other diseases… Some of which can be fatal if not treated promptly and properly… Don’t become a statistic!
With the silent form of celiac disease, there are no outward symptoms until you come down with a serious or fatal autoimmune disease later in life. The only way you will be able to find out that you have the silent form of celiac disease is if you have an intestinal lining biopsy and biochemical testing. If you have one or more blood relatives with diagnosed or suspected cases of celiac disease, please see your physician and get tested… your life may depend upon it.
This form of celiac disease is especially dangerous because if you do not handle celiac disease properly, you may eventually end up with one of many very serious, known side effects of long-term untreated celiac disease like infertility or cancer (lymphoma). For more information on this form of celiac disease, see my article “Gluten Intolerance: A Silent and Vicious Killer!”
In this form of celiac disease the individual being tested will usually test positive for gluten related biochemical markers but when a biopsy of the lining of the small intestine is performed, the result of that biopsy is negative.
Other Thoughts About Celiac Disease
Celiac disease can be thought of as a chameleon. This is due to the wide variety of symptoms that it exhibits. Because of those symptoms, it may seem to be another disease. Celiac disease is frequently misdiagnosed as anemia, colitis or any number of other diseases which have symptoms that are included in the list of over 100 known celiac disease symptoms.
As a result of this, the Consensus Report has suggested an approach to diagnosis, which is similar to that used in psychiatry. The panel of experts has identified five different indicators that seem to be present in the symptoms and test results of individuals with celiac disease.
The panel of 15 experts have agreed that if four of the five indicators are present, then the individual should be diagnosed as having celiac disease.
I’m not going to list the indicators here as they are too technical for this article. If you still wish to review the list of symptoms, please refer to the Consensus Report by <clicking here>.
Ataxia is a lack of muscle coordination. It is a neurological condition which is caused by damage to the brain as a result of, in this case, an autoimmune attack on the brain of the affected individual due to the presence of the gluten molecules or parts thereof.
When an individual has ataxia, they may not be able to control their speech, eye movements, picking up objects, or other voluntary muscle movements properly. The part of the brain which is usually affected is the cerebellum.
You can find out more about ataxia by <clicking here>.
This is closely linked to celiac disease. While it is not celiac disease itself, it is closely related to celiac disease by a biochemical relationship between the genetics of the afflicted individual and their immune system.
A person with dermatitis herpetiformis will usually present with a blistering rash and breakdown of the upper layers of the skin. Small blisters may appear on the surface of the skin. The blisters often look like pimples. Then, they may break open and spill their liquid contents out onto the skin. The spilled liquid will dry and form what looks like scabs or a crust.
The predominant symptoms are intense itching and burning. Normally, the rash will occur only on the forearms or the elbows but other areas may be affected such as the buttocks or knees.
Dermatitis herpetiformis is treated by a combination of a chemical called dapsone and a gluten-free diet. The dapsone will often be discontinued after it becomes apparent that the gluten-free diet has begun to be effective.
<Click here> to find out more about dermatitis herpetiformis.
The second type of gluten related disorders is Allergic. There is only one allergy that is known to be in this group. It is wheat allergy.
Very often, people become confused about the difference between a wheat allergy and a gluten “allergy.” A wheat allergy is an allergic reaction of the human body to the presence of wheat proteins. It produces allergy-type symptoms. Just like an allergic response to a bee sting, an allergic response to wheat can be quite serious.
However, what someone may call a “gluten allergy” is not an allergy at all. It is what is called an autoimmune response. The body’s response to gluten in that case is entirely different from an allergic reaction. There are different chemicals and physical manifestations and consequences involved.
Clinically, wheat allergy often presents as asthma, wheat induced anaphylactic shock, rhinitis and other allergy–produced afflictions. When wheat allergy is tested for, it will have the biochemical markers for an allergy… Not the markers for an autoimmune disease like celiac has. It will also have a positive response to a prick skin test. And, a gluten challenge test will exhibit a positive outcome for the wheat allergy associated antibodies.
<Click here> to find out more about “wheat allergy.”
The Gluten Challenge Test
In a gluten challenge test, the individual must eat a “physician defined” amount of gluten-containing foods for at least 6 – 8 weeks after not eating them for significant period of time. This test is done to intentionally cause the body to produce the appropriate antibodies and intestinal lining damage (celiac disease, only). It is done only if the individual being tested has stopped eating gluten voluntarily before testing. The problem with doing that is that the body will no longer produce the antibodies required for diagnosis through biochemical testing and, in the case of celiac disease, the lining of the intestine will heal making a biopsy negative or inconclusive.
Gluten sensitivity is another term, which is used in the general population and for which there is almost no universal understanding as to what it is.
Typically, individuals who are actually celiac will use the term gluten sensitivity interchangeably with gluten intolerance. This is a result of the general confusion in the English-speaking world as to what gluten intolerance and gluten sensitivity actually are.
As far as the terms “gluten intolerance” and “gluten intolerant” are concerned, please refer to the box above where we have made a policy statement for Elegantly, Gluten-Free. We hope that policy will help visitors to ElegantlyGlutenFree.com understand our use of those as well as related terms.
Gluten sensitivity, on the other hand, refers to a condition where were individuals will have symptoms similar to, if not identical with, symptoms exhibited by individuals who actually have gluten-related autoimmune disease. However, unlike celiac or the other two autoimmune related gluten disorders, gluten sensitive individuals do not have small intestine damage and the tTG autoantibodies do not show up in testing.
In addition, in the case of gluten sensitivity, diagnosis is made by what is known as the “diagnosis by exclusion criteria.” Because of that, the rule that your physician will use to diagnose you with gluten sensitivity (if that is what you have) is that you will not have small intestine damage known to be caused by celiac and your blood tests will not contain the correct biochemistry for you to have gluten-related autoimmune disease.
In addition, the symptoms of individuals with gluten sensitivity may resemble those associated with gluten-related autoimmune disease (celiac disease), but with a prevalence of non-digestive tract associated symptoms, such as behavioral changes, bone or joint pain, muscle cramps, leg numbness, weight loss and chronic fatigue.
A Final Thought
In summary, let me say that the Consensus Report is a much-needed step toward universally understood communication and diagnostic methodologies concerning gluten related medical issues. There are however still some terminology ambiguities involved. The report itself utilizes the term gluten intolerance to refer to celiac disease, etc. So, some ambiguity remains.
However, the clear differentiation of the three major groups of problems associated with gluten medical issues is a major step forward… Especially as the Consensus Report relates to gluten intolerance versus gluten sensitivity.
<Click here> to read the full Consensus Report.
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