Food Allergy and Intolerance Ink: Dear Girl on Twitter...

You are always a girl, usually in her twenties, but sometimes younger, and you say you’re going to stop eating gluten. You say you’ve been feeling a bit ill, a bit bloated, a bit sick, a bit tired-all-the-time, and – why not – you think this gluten-free diet thing’s worth a go. Someone called Miley Cyrus said something about it, after all.

I see a lot of your tweets. This is because I check out the gluten, glutenfree and coeliac hashtags on Twitter during idle moments, just to see what is happening in GF and CD world, to find something worth RTing to my followers, that kind of thing. And when I see one I usually I think, ‘Best ignore it – I’d be interfering’. But occasionally what I read is a bit more alarming than the norm, so I think, ‘I’ll drop her a quick tweet, just to tell her to carry on eating gluten and to see her doctor’. And so I do and I’m ignored. Who can blame you? Random bald git telling you to do the opposite of what you want to do – I’d ignore me too.

But what needs to be said can’t be said in 140 characters. It can only be said in about 5,000. So here they are.

Continue to eat gluten. If you stop eating gluten one of three things will happen, and none of them are good things.

1. You feel better

Why isn’t this good? Because feeling better means you’ll probably decide that, yes, gluten is making you feel ill, therefore that gluten is bad, and that you may have coeliac disease and so you are going to avoid it. Welcome to the many problems associated with all this:

a/ Your decision that gluten has been making you feel ill is not reliable. I’ve explained why eliminating gluten and feeling better does not mean gluten is making you ill here and here, but in a nutshell, your improvement could be psychological, or it could be due to another constitutent of all the food you’ve cut out (eg yeast, wheat starch), or to some nice nutrient you’re now consuming in the food you’ve introduced to compensate for all the foods you’re no longer eating. It does not mean your body hates gluten. Even if that somebody called Miley Cyrus said it’s crappp.

b/ If you decide your body does hate gluten it will reinforce your determination to avoid it, perhaps needlessly, perhaps forever. A gluten-free diet requires specialist advice and support from a trained dietitian in order to be nutritionally complete. You won’t have received this because you’ve gone it alone, and you are now vulnerable to deficiencies in things like B vitamins and zinc, which can impact your health long-term in many colourful ways.

c/ But let’s say you are right: you do react to gluten and you are a coeliac. Avoiding gluten would, then, be the right thing. But because you’ve not had proper dietetic advice, you may not be avoiding gluten as strictly as you need to be. How hard, you might wonder, can it be? Very hard, actually, as countless people with (properly diagnosed) coeliac disease will tell you.

Yes, you are quite clever, and you will avoid bread and Weetabix and swap your standard pasta for corn pasta. However, you’re not as clever as you think, and you will perhaps drink some cheap cola, or eat a sausage, or a chocolate bar, or any other potential surprising source of gluten, and these small traces will continue to damage your gut. The worst thing about this is that because you have reduced your gluten intake, you may no longer feel the symptoms (you feel better, remember), so you may get no warning of what’s going on inside you. Congratulations: you’re now increasing your risk of osteoporosis in later life, and quite possibly intestinal cancer.

d/ At some point you’ll hear that people with coeliac disease can get food on prescription and you think how handy that would be. You eventually go to your doctor and ask for a test. She tells you that you need to eat gluten regularly for six weeks before you can be tested, because the blood tests only work when you are eating gluten – a key reason why the charity Coeliac UK implores undiagnosed people like you to continue to eat gluten until you are diagnosed by doctors who know more about gluten than somebody called Miley Cyrus. You either refuse to go back on gluten – which leaves you stuck with some of the issues above – or you do go back on gluten. If you do have underlying coeliac disease, going back on gluten may well make you feel very ill, because your body was just getting used to having a bit of a break, and it is now going to rebel fairly violently at having this substance which it hates back in its system. You have six weeks of this before you can get tested. Good luck with that.

2. You feel the same

If you feel the same you will then decide your problems aren’t related to gluten. But this isn’t necessarily true either. Because coeliacs take a while to get better, so if you do have undiagnosed coeliac disease you may not feel the benefit of your gluten-free diet straight away. Still, because you don’t know this, you might go back to eating gluten, opening yourself up to long-term health risks mentioned already. You may also tinker with your diet experimentally in other ways – which again could leave you lacking in nutrition. This is because you’ve now abandoned soya, or nuts, or dairy, or lactose, or another food which somebody called Miley Cyrus or somebody called something else mentioned on Twitter, and now your diet is severely restricted and difficult. All you are doing is delaying the proper investigation you may need and causing yourself a lot of distress.

3. You feel worse

You feel worse and you may not be eating properly and now you’re confused and you feel depressed and you have not achieved anything. Except make yourself feel worse.

Do not give up gluten.

Do not fork out for an unproven high street allergy test of suspect science. Do not consult a homeopath, a kinesiologist, a reiki person, a clairvoyant, or your mother’s cousin’s neighbour who once tried an echinacea and arrowroot brew and never had the trots again.