A nice reminder arrived today in my inbox from Dr Osborne at the Gluten Free Society. He’s referencing a very old study (2009) but I recall it was one of the first studies I read that kicked off my foray into why many coeliacs don’t get better on a gluten free diet.

Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet.

You can read the whole study or just the abstract above, but essentially what they are saying is that it is pretty common for people to feel better and even get their blood markers and villi back to normal by going gluten free, but that their intestinal immune reaction is continuing. In other words, damage is still potentially being done.  Eek.

They conclude:

In summary, our study indicates that reversal to normality of small intestinal histology is rarely achieved in CD patients during prolonged and strict adherence to GFD and despite remission of symptoms.

In a majority of patients, normal villous architecture is restored, but intraepithelial lymphocytosis persists independently of a HLA gene dose-effect and of HP infection.

Studies on patients with type-1 refractory CD⁴⁴ and on patients developing severe complications despite clinical improvement¹¹ suggest a potential of persisting mucosal abnormalities for development of severe CD-related complications. 

Might it be cross-reactivity to the gliadin in other grains? I reckon it is very possible. Clearly, the immune system is still being activated by something.

Anyway, a reminder for you. Many people don’t stick to a GF diet ‘properly’ for lots of different reasons but it seems that even for those who do, it may not be enough. That’s why I started TrulyGlutenFree all that time ago!