I thought this long overview piece from Medscape today might be useful for those of you with diagnosed coeliac disease:
As the article says, there is a significant number of coeliacs who do not heal on a traditional gluten free diet:
Complete recovery of the intestinal mucosa occurs in the minority of coeliac patients on a gluten-free diet [Wahab et al. 2002b; Rubio-Tapia et al. 2010]. (My emphasis: just look at that word: minority!)
A significant proportion of patients with coeliac disease are ‘nonresponsive’ to gluten withdrawal. Most cases of nonresponsive coeliac disease are due to persisting gluten ingestion. Refractory coeliac disease (RCD) is currently defined by persistent symptoms and signs of malabsorption after gluten exclusion for 12 months with ongoing intestinal villous atrophy.
We have our own thoughts on that, of course, namely that some people are genetically sensitive to more glutens than just the gliadins, but here is what the mainstream opinion is about non-healing.
As always, the blame is laid squarely for most at the patients’ continued consumption of gliadin, but ‘true’ RCD (refractory coeliac disease) is thought not to be to do with coeliac disease at all, rather a problem that looks like coeliac disease but might be IBS or lactose intolerance. It might even be auto-immune or was a misdiagnosis of coelaic disease in the first place according to the researchers here. I am sure it is with some people, but that doesn’t really explain why the villi doesn’t heal, does it?
They do admit that there is likely to be a range of sensitivity in coeliacs, which is good to see:
It is likely that there is a dosage effect of the gluten and that the threshold for inflammation varies between individuals and possibly also over time. Therefore, some individuals may be able to tolerate a small amount of gluten in the diet without manifesting mucosal villous atrophy, whilst others may be exquisitely sensitive, even to trace amounts of gluten ingested as a result of contamination during food preparation
And, of course, this will then affect how long it takes people to heal:
Clearly the length of time for mucosal recovery to occur depends on the patient’s learning curve for dietary gluten exclusion. In a study performed in Cambridge, approximately 25% of patients reverted to normal intestinal mucosa within a year, with a further 30% showing minor inflammation without villous atrophy [Corbett et al. 2012]. In those with ongoing villous atrophy, similar proportions respond to more stringent dietary gluten exclusion with mucosal recovery [Sharkey et al. 2012]. Anti-TTG antibody titres decline rapidly in the majority of coeliac patients excluding gluten effectively [Sugai et al. 2010], however levels may be sustained for 1–2 years in a small proportion of patients. A secondary increase in antibody titre is likely to suggest dietary lapse, however serological tests have a very low sensitivity in this setting [Dickey et al. 2000b].
The article mentions that the issue, for some, seems to be a continuing immune problem that doesn’t cease with the traditional gluten free diet in refractory cases:
Persistent over-expression of IL-15 in the intestine of patients with refractory disease may therefore account for the pathological features, but the trigger remains to be elucidated.
So, something is still causing an immune reaction. I happen to think that other gluten types have something to do with it, but I am sure there are other factors too.
Anyway, the piece concludes by outlining the treatment options for refractory coeliac disease, which include identifying other factors like hypersensitivity, IBS, lactose intolerance, immune activity etc and the provision of steroids and other non-steroid meds, but there is clearly a lot of work to do on this yet, even from the mainstream perspective:
There remains considerable controversy regarding the diagnosis, treatment and surveillance of patients with RCD and international consensus in these areas is urgently required in order to facilitate future therapeutic advances.
Absolutely right. Good overview piece. Have a read.