I thought this long overview piece from Medscape today might be useful for those of you with diagnosed coeliac disease:
The Management of Refractory 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.
Hi Micki & Glutenaughts,
It is beyond strange that you would post this the day before I had an experience eating cooked apples and got a reaction in the small intestines. I reviewed in my mind the possibility of fructose provocation, but I eat fruit all the time without that specific response. But the experience brought my mind back to childhood and TV dinners in aluminum trays (don’t know what you call them on your side of The Pond — perhaps Merry Olde never had the industrial waste known as TV dinners) with apple cobbler in it. THAT got me to thinking about cross-sensitization of antigens since NOTHING happens in a bubble. IF the gliadin provoked a damaging cascade in the gut AT THE SAME TIME that other food antigens would be passing BY DEFAULT into the bloodstream with the other undigested proteins then, we have classic hypersensitivity reactions that can be triggered IN THE ABSENCE OF GLUTEN/GLIADIN! Eat and apple — get a gut ache. Regarding the laundry list of ‘other thing(s) it could be’ as if you had to pick one right answer out of a multiple choice the answer is obvious: All of the above, since nothing happens in a bubble and ALL of those processes are going on in the gut at the same time. To think that we aren’t lacking enzymes to break down a hexapoloid non-food item with 23,000 protein antigens expressed is sheer madness, so OF COURSE there will be intolerance as part of the spectrum/continuum of everything that is wrong.
Regarding the inability to heal the villi: who in the world is talking about leucocytosis that MUST happen after a meal of anything that the body lacks the ability to break down via natural enzymatic pathways so that white blood cells must come out and clean up what is perceived by the body as junk and invaders using the only indiscriminate method that it has available? : oxygen radicals. That alone would mow down the villi like scalping your lawn with a mower with the deck set too low. Thank you for posting all of this important stuff from the propeller-heads because it gets a FarmBoy like me incensed enough to look beyond to reach for a better answer.