Experts are at long last calling for a re-naming and sorting out of the various gluten illnesses as coeliac disease is now seen as just one of the gluten illnesses. Yipee; I am SO pleased.
I saw this report the other week and, thankfully, Alex at CoeliacsMatter.com has saved me a ton of work by writing up a report explaining the new preferred nomenclature of the gluten-related disorders (official umbrella term now). Thank you to him.
Read the report yourself (follow the link above), but essentially what comes through is that coeliac disease is no longer recognised as the only gluten illness, and there is no such thing as typical or atypical coeliac disease: the symptoms we used to look for (weight loss, failure to thrive, diarrhoea) are not present in most sufferers.
Here are the preferred terms we should now be using, plus my thoughts on some of them, of course!:
Coeliac disease (CD) is defined as a chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.
Asymptomatic coeliac disease is CD not accompanied by symptoms at initial diagnosis, and in which no subsequent symptomatic improvements are noted following a GFD.
Classical coeliac disease is CD presenting with diarrhoea, malnutrition and weight loss / failure to thrive.
Non-classical coeliac disease is CD presenting with symptoms other than those related to malabsorption (ie diarrhoea and malnutrition).
Subclinical coeliac disease is CD below the threshold of clinical detection, without signs or symptoms sufficient to suggest testing in routine practice.
Symptomatic coeliac disease is characterised by clinically evident gastrointestinal
and/or extraintestinal symptoms attributable to gluten intake.
Potential coeliac disease relates to those with normal small intestinal mucosa who are at increased risk of developing CD as indicated by positive serology. (Ed’s note: this is dangerous as it is ‘watch and see’. Many experts actually believe that any positive antibody to gliadin (should be gluten that is tested, but isn’t) is enough for recommending the avoidance of gluten since it is a progressively damaging disease and there is clearly already an immune reaction going on. I agree with that.)
Non-coeliac gluten sensitivity (NCGS) relates to symptomatic disease in response to gluten ingestion, in the absence of CD and WA. (Ed’s note: at long flippin’ last after all of us being told there is no such thing, now, at least, we have an official name for a gluten illness that is not CD or an allergy!)
Gluten-related disorders is the preferred umbrella term to describe all conditions
related to gluten, including GA, DH, NCGS and CD. (Ed’s note: I have always described it as a spectrum of gluten illness and now we have a name for it.)
The other bit of Alex’s report I found particularly interesting was this:
Non-coeliac gluten sensitivity (NCGS) is the proposed name for a condition with similar symptoms to CD, but with a prevalence of “extraintestinal symptoms, such as behavioural changes, bone or joint pain, muscle cramps, leg numbness, weight loss and chronic fatigue”. (Er, who does that sound like? Me, and most of you! Note, this could be any symptom, not just these listed here.)
The researchers suggest that patients who improve on a GFD in the absence of any auto-immune or allergic condition may instead have NCGS, and have proposed raised anti-gliadin antibodies (AGA IgA / IgG) as possible markers for the condition. Diagnosis is made by excluding both CD and WA, followed by an exclusion diet and a blinded gluten challenge.
I don’t agree that an antibody should be used for diagnosis. Why? Because first, only gliadin and only one type of gliadin at that is looked for, rather than gluten itself. Some people do not even have raised antibodies but still have all the signs, symptoms and a positive diet challenge.
I prefer a gluten gene test any day because, even though it cannot say ‘you have NCGS’, you can at least see if you have the right genetic pattern for it to have developed, then put your symptom picture together with that gene pattern and you can safely make an assumption by putting two and two together. Then, you see how the person goes on a gluten free diet (GFD).
I agree that part of the diagnosis should be made by elimination of the gluten grains, but by that, I mean starting with the removal of the traditional gliadin grains (by rights, it should be called a gliadin free diet, not a gluten free one which is misleading – another nomenclature change, please!) and then all grains if the NCGS genes are present since all grains contain a form of actual gluten rather than gliadin.
I also don’t agree that the diagnosis should be only if CD and Wheat Allergy (WA) are ruled out. I have seen many patients who have all three (think of all those coeliacs not getting well, for example, on a traditional gliadin free diet).
NCGS is thought to be far more prevalent than either CD or WA (experts think 1 in 7 currently) and I think that, in genetically susceptible people, the gluten sensitivity comes first, followed by auto-immunity and leaky barriers. CD is one type of auto-immune disorder caused by gluten – happens to attack the villi – but, as we know, there are many others (even dermatitis herpetiformis (DH) is a recognised one).
Wheat allergy is caused by the breakdown of the gut and then other body barriers, leading to an immune reaction creating an IgE antibody, classical allergy, but it could just as easily cause IgG, IgM, IgA or IgD antibodies resulting in so-called intolerance (a moot term; should be part of the allergy spectrum – perhaps we should have ‘allergy-related disorders’?!).
In short, if you have any of the gluten-related disorders, it can develop in any of the immune, auto-immune, allergy or NCGS ways. The treatment is the same with all of them in my view. Removal of the grains and other allergens/environmental stressors giving the body jip, lower the inflammatory reactions, re-heal the damage caused, re-nourish the tissues, solve absorption and repair the body barriers.
Funnily enough, that’s the Barrier Plan about to be launched shortly! Keep your eyes peeled for it…
Meantime, I shall now be attempting to use the right names for the different gluten related disorders. Ooh, get me!