Non-coeliac gluten sensitivity: it’s gonna take some time …

This new article – Exploring the Strange New World of Non-Celiac Gluten Sensitivity – just published in Clinical Gastroenterology and Hepatology, is short and well worth a read. It considers the key recent studies into NCGS – their strengths, their complexity, their limitations, their inconsistencies – and the small steps we are making in understanding what is happening.

There are a number of stand-out extracts.

1. The authors speculate that those interpreting the mixed results may be inadvertently biased: “The viewer … draws interpretations that are based on his or her prior beliefs about NCGS.”

In other words, if you believe in NCGS, you may see evidence for it in the studies; if you don’t, you see the holes and flaws.

2. “There are no proven biomarkers for NCGS … This is particularly important to emphasize in light of the fact that patients are looking for answers and may be offered testing for NCGS via non-evidence-based tests of blood, stool, or saliva”.

In other words – stay away from paid-for online / high street tests – at least for the time being.

3. “… it is undeniable that gluten exerts a large nocebo effect on a significant number of patients …” 

In layman’s terms: if you think you get ill by eating gluten, and you eat gluten or think you’re eating gluten – you get ill. The harsher critics will say ‘all in your head!’ – but while this indeed may at least be partly psychosomatic, it doesn’t invalidate what patients are experiencing, as the authors point out in another key extract ….

4. ” … it is counterproductive to debate whether NCGS is “real”; the patients are real and seeking our care. Some of these patients are in a great deal of distress, and we should try to help them.”

Shifting the discussion away from whether it’s real, and trying to find out what it is (be it singular or plural – as it may be several distinct conditions), will surely help those with symptoms. As I’ve argued before, even if NCGS turns out to be psychogenic, patients should be respected and not be dismissively told they’re imagining their symptoms by the Daily Mail, unsympathetic doctors or commentators such as Rod Liddle.

5. “NCGS is a complex entity and will not give up its secrets easily. As such, studies with more limited but focused aims are likely to be more effective in providing important incremental knowledge.” 

And here’s the crux: there’s an awful lot we don’t know; it’s going to take us an awful long time to get there. Science moves slowly; it’s about adding jigsaw pieces over weeks and months to finally get the satisfaction of the picture at the end. We’re just going to have to be patient …

1 Comment

  1. Pingback: A century of coeliac and food allergy | Allergy Insight

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