Esther Rantzen has written an article in the Mail about her daughter, Emily, who for many years has suffered from the debilitating effects of ME/CFS, and which until recently continued to effect her energy levels, despite ongoing improvement.
A few weeks ago Emily tried a no-carb diet – no grains or sugar. In days, a persistant troublesome rash on her hand had cleared. Her brother speculated on undiagnosed coeliac disease, and suggested she reintroduce gluten into the diet so she could be properly tested. Emily declined, but subsequently accidentally drank a smoothie which had gluten in it. Back came the rash. Rantzen deems this ‘proof’ – presumably that gluten was the cause.
It might well be the cause, but it is far from any form of proof. There are other possibilities when a diet is changed drastically. As I’ve written before on this blog, you could be experiencing the benefits of a more nutritionally diverse diet – we are not told what Emily consumed in place of her disallowed foods, and these could have provided her with previously missing nutrients that triggered health improvements. Eliminating carbs means eliminating junk foods, and that reduces intake of dairy products and additives, for example, which could be a problem for some. Wheat intolerance is another possibility.
Esther Rantzen does not appear to be entirely popular among the ME community, and interested parties can easily find some criticisms of her online in that regard, both in the comments to her article, and elsewhere.
I’m interested in the coeliac disease. This morning, Coeliac UK tweeted a link to the article, in words which implied that Rantzen’s daughter had been properly diagnosed with CD.
But nowhere in the article is that stated. In fact, the implication is to the contrary. Emily refused to go back on a gluten-containing diet in order to get tested.
I queried Coeliac UK and they corrected themselves promptly, although I must confess to being slightly uncomfortable about the fact they are linking to the story from their website.
Quite often, when newly diagnosed coeliacs who have begun a gluten free diet consume some gluten accidentally, they react very badly indeed – much more severely than they ever did when consuming gluten regularly.
Here’s my concern about this article: that readers experiencing symptoms will read Rantzen’s piece, and experimentally try a gluten-free diet to see whether they feel better. This is not the recommended advice, which is to continue with gluten and arrange to have blood tests. Stopping and then having to restart gluten consumption to get a proper diagnosis (which qualifies you for prescription gluten-free food) could make you feel very ill.
Why risk it?
I thought exactly the same thing when I read the article. Her rash could have cleared for a number of reasons. CD is not proven simply by removing gluten from the diet.
It's a pity she waited all these years to do the detox. I recovered from Chronic Fatigue with intensive juicing detox many years ago!
True, her rash could have recovered for a number of reasons but, equally, it could be argued I guess that your CF could have recovered for any number of reasons too… juicing being just one. But I'm a detox sceptic as my latest post (May 2012) on Rantzen suggests!
Thanks for comment – much appreciated.
I wouldn't worry, as a coeliac I can assure you there is no reason to assume she is depriving herself of necessary vitamins because she has cut out gluten. It is entirely possible to have a very balanced diet. The changes described when adding/taking gluten from the diet is perfectly in line with coeliacs/gluten insensitivity. It is only those who don't suffer with it who tend to question it.
No, no reason to assume that – and I don't think I did at the time. Yes, I quite agree it's entirely possible to have a balanced diet – although it is more difficult without the support of a dietitian, which a self-diagnosis will not give you easy access to. Yes, I agree – the symptoms described are in line with CD/GS – but are simply insufficient as evidence. I think it's perfectly acceptable – and often absolutely right – that those without gluten-related disorders question when appropriate. They have the advantage of objectivity thanks to not being biased by personal experience. Thanks for the comment.