A recently published paper in the journal Nutrition in Clinical Practice discussed the results from an Australian group exploring the global trend in self-diagnosis of non-coeliac gluten sensitivity (NCGS). We are all aware that the possibility that gluten and or related compounds may relate with our gastrointestinal tract and associated immune cells in a detrimental manner leading to a wide range of symptoms. Well we are not alone and many people are making the leap to exclude gluten without any formal diagnosis or even careful work up – so what some may say, well the Australian group suggest this may come with unanticipated risks.
Reasons people self-diagnose
It is well recognised in the Nutritional Therapy community that obtaining medical support for the inclusion or exclusion of coeliac disease as a diagnosis is fraught with complications and is time consuming. In part this is because primary care physicians are less convinced or do not keep up to speed with the increasing frequency of diagnosis and the related costs remain a challenge. As such recommendations to exclude gluten from friends or well-meaning practitioners and clinicians without formal diagnosis abound.
Why might this be a problem?
The researchers in the Australian Journal suggest the following possible complications.
Incorrect diagnosis of NCGS is high
In the study a high percentage – about 75% of the people who had self-diagnosed did not correctly fill the criteria for NCGS. Now this is in part because diagnosis of this condition is not clear cut, and there remains some work to be done to ensure a unified method of diagnosis, biomarkers are being used and explored, some of these are ahead of the mainstream approval, and as such may be challenged in times to come. However, we can agree I think that NCGS is more common than coeliac disease and that both are likely to be either under or misdiagnosed commonly.
A recent article in Scientific American addresses the current understanding of NCGS, highlighting the possibility that the condition is misnamed and that the symptoms associated with it may be due to other components of wheat.
Expert committees are by their very nature prone to labouring a point and it is likely that the exclusion process is far more attractive than waiting to see someone to have coeliac excluded and food allergies excluded before confirming that because symptoms improved with the avoidance of gluten containing foods that you can now be diagnosed with NCGS.
Examples of patterns of non-coeliac exclusion amongst health care professionals
The authors noted that of the people included in the study who were self-diagnosed with NCGS, 68% had not been appropriately excluded for coeliac disease. For those placed on a gluten-free diet by an alternative health practitioner, 70% had not been adequately diagnostically excluded. This pattern extends to general practitioners where 58% of them did also did not complete appropriate coeliac disease testing for their patients before giving them a diagnosis of NCGS. Dieticians in Australia scored best when extending a diagnosis of NCGS; but still did not refer for diagnostic work up 43% of the time.
Dietary compliance is important but seems variable
As we all know and understand dietary non-compliance with coeliac disease (CD) raises the risk of osteoporosis, other autoimmune diseases, delayed growth, cancer and may even increase risk of premature death. As yet the risks of noncompliance in the NCGS is less clear, albeit the individual tends to quickly note a resumption of symptoms if they stray, but they do not at this stage appear to carry the same risks as in those with CD.
The Australian group records that only 58% of people followed a continuous exclusion of gluten, which if there were some non-diagnosed Cd patients in this divergent 42% may actually keep them at a higher risk of associated maladies and illness. Compliance is hard for gluten avoidance, but my be improved with a clear diagnosis – so it remains a question of whether symptomology indicates pathology or functional reactivity and how best to exclude.
25% remained symptomatic after exclusion
This may be attributable to the poor adherence or it may be because the gluten component is not the culprit, for example poor absorption of fructose is a likely contender, which fails to resolve with just gluten exclusion. Indicating carbohydrate rather than protein is the triggering agent. Other components of the diet that may be conflated into NCGS include wheat germ agglutinins, ATI proteins or specific amino acids, all emerging players in the research surrounding NCGS. Careful diagnostic evaluation early on in the analysis will make future analysis of persistent symptoms easier, and hopefully bring a satisfactory resolution earlier.
As always there are study related misgivings, in that the transfer to general population groups need to be considered in light of a predominant middle aged female population been followed up – however, I think all clinicians and NTs will recognise that from a clinical perspective this represents the most typical group presenting with complications that often resolve with exclusion.
In the UK NTs are able to either refer for private diagnostic testing or back to the patients GP for follow up analysis, for many years the dairy and gluten free recommendations have been a mainstay of the clinical toolkit, and are often recommended without any real review and diagnostic work up. Compliance is a real challenge and whilst just 8% of the population are estimated to have CD, it behoves us to keep in mind that over many years a missed diagnosis and poor gluten free compliance may induce a series of health problems that could have been avoided with better analysis at the beginning.
 Biesiekierski JR, Newnham ED, Shepherd SJ, Muir JG, Gibson PR. Characterization of Adults With a Self-Diagnosis of Nonceliac Gluten Sensitivity. Nutr Clin Pract. 2014 Apr 16. View Abstract
 Putkonen L, Yao CK, Gibson PR. Fructose malabsorption syndrome. Curr Opin Clin Nutr Metab Care. 2013 Jul;16(4):473-7. View Abstract