I received a number of emails in response to my article in the Daily Mail last week, about coeliac Katrina Robinson, who experienced neurological symptoms for many years prior to diagnosis, and the failure of her doctors to suspect CD. They were mostly very positive. The reaction generally has been good from various quarters, but I thought I’d talk here on a few issues that have arisen from comments to the article itself.
First commenter, Jen from the Wilds of Scotland, argues that ‘gluten is a protein that EVERYBODY can well do without’ and that gluten ‘gums up the villae [sic]’. While it is true that gluten is not an essential protein, not everybody needs to avoid it, and the idea that it ‘gums’ up the villi is not an accurate reflection of what goes on in the coeliac-affected gut. It is possible that this anti-gluten commenter has fallen foul of the ‘it works for me’ fallacy: in this case ‘gluten exclusion works for me therefore it’ll work for everyone else’. I consider this notion a real and serious obstacle to the public understanding of health, and will be blogging about it further in due course.
Emily from Lymington advises that “If you suffer from IBS, multiple allergies, or just so many different complaints one after the other, just go gluten free and see if it makes a difference, you will know in about 3 – 6 weeks…” This is poor advice – action which you should not undertake without the supervision of a doctor or dietitian. As I have said many times, experimental gluten exclusion may well make you feel better, but this does not necessarily imply a gluten sensitivity or coeliac disease, for reasons touched upon here.
Furthermore, if you are an undiagnosed coeliac, removing gluten will make a future diagnosis difficult as blood tests may not reflect the true picture – you will need to go back on the gluten first. You may not want to – meaning a proper diagnosis may not be made, so you won’t qualify for prescription foods – and, if you do, symptoms could be more severe than before. “Wheres [sic] the harm?” Emily asks. There, Emily.
In the article, I explain that my case study Katrina undertook other food sensitivity tests “ironically, to be told she didn’t react to wheat”. Brenda from Wembley objected to this, rightly pointing out that “coeliac disease is NOT an allergy, but, an auto-immune disease. Therefore, this is why one would not react to an allergy test for wheat.”
Point taken, but I think this part of the piece suffered from a little editing. It was ironic that she was told she had no issue with wheat, and it was an important point to make, because most people don’t understand the various types of food hypersensitivity there are. As far as she was concerned, wheat was not an issue – so she thought no more of it, potentially steering her away from looking for the real answer, and allowing her to continue eating wheat without fear or suspicion.
Debbie from East Sussex also commented on the description (which appeared only in print, and in the ‘sell’ for the article) of coeliac as being a “worryingly common allergy”.
It’s worth pointing out to non-journalists that the journalist rarely, if ever, writes the headline, captions, sidebars or other ‘bits and pieces’ that complete an article – just the main story. The extras are written by sub-editors or section editors, and I can’t know why the word ‘allergy’ was used, but it’s possible that those involved weren’t aware that coeliac wasn’t a specific type of allergy, and also possible that they elected to use the word as a simplified (if strictly speaking inaccurate) means of conveying the general idea to the wider public. It’s not ideal, I know, but I’m generally of the view that we should let this one go, on the whole, as there are bigger coeliac fish to fry, so to speak.
Thanks for all your comments.