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 advises 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 practitioner, a clairvoyant, or your mother’s cousin’s neighbour who once tried an echinacea and arrowroot brew and never had the trots again.

Do go to your doctor. Please!

15 Comments

  1. Michelle Berriedale-Johnson

    Yes, Alex, you are right and I do – maybe surprisingly! – agree with you that their doctor should be the first port of call for anyone who thinks they might have a problem with gluten or with any element of their diet.

    I just wish that I felt a little more confident that their doctor will look at the possibility of coeliac disease, gluten sensitivity or other food intolerance. Sadly, this is not always the case – and then what do they do?

    Reply
  2. Anonymous

    Yes this is true I have many customers that visit my cafe/shop who have been trying for months to get their doctor to sort out their problems and get so deflated they put themselves on a gluten free diet and feel so much better they can't go back to eating it, but I do see your point Alex and if someone asks my opinion I alway's say to them while they are still eating wheat ask for a test because it's much harder to start eating it again after taking it out of their diet, if that is what they feel has caused the problem.

    Reply
  3. Anonymous

    Go to you doctor, yes that is good advice but what if the doctor has no awareness of the allergy and does not know what to look for. 3 years ago my wife was seriously ill, virtually bed ridden and in severe pain. She went to her doctor he thought it was appendix, went straight to the hospital and was in for a few days, they thought it was a cyst and needed a hysterectomy, thankfully no operation took place. She came home continued with hospital appointments, x-rays, scans scrapes blood tests etc and they still had no ideas. Diet was not considered even after she said she had stopped eating bread and pasta. She changed her diet to avoid gluten and she felt a bit better but decided to exclude wheat totally and is much better for it.
    You try and talk her into getting tested when she was in that much pain she wanted to die.
    We are aware we are missing out on benefits from being diagnosed but there is no chance she is going to make herself that bad again!!!!

    Reply
  4. Alex G

    Thanks for comments, everyone.

    I have every sympathy for people who are desperate to get the root of their health problems and who feel their doctor has failed them or has not considered everything he or she perhaps should have considered.

    I do think awareness of coeliac is much improved among GPs, but we now need to do likewise with non-coeliac gluten intolerance – this will take some years, I suspect.

    Really, this post only relates to a very specific phenomenon I've noticed: young women tampering with their diets because of celebrities pushing so called 'evils' of gluten (and to a lesser extent dairy). They do it experimentally, they do it because they may have mild health problems, they do it to lose weight. And they can get into a mess – points I made above.

    People have asked 'well what about those whose doctors don't know anything?' and 'what of those still suffering?'. Every case is different, and must be treated as such, but I would still maintain that excluding coeliac must be that very first step if your symptoms could be CD. After that? Guess NCGI should be considered, but that's another post for another day….

    Reply
  5. Anonymous

    My doctor was amazing tbf. I'd never considered it could be coeliacs until she suggested a blood test, thought it was my thyroid playing up again. After blood test was sent straight for a gastroscopy to biopsy and confirm. Then straight off to a dietician and for a bone scan to make sure all was good. Can't fault them all this in the space of about a month. Well done NHS

    Reply
  6. Alex G

    I think too often we only hear of the problems, and not the good stories like yours, so really glad you shared it, and pleased you had a good experience. Thanks.

    Reply
  7. Glitter girl

    My daughter has coeliac disease, she's 10. So we are still learning. But If your playing at being gluten free your just damaging yourself. Gluten hides is so much stuff, liquorice, gravy, chocolate, crisps, pre grated cheese, mustard, soy sauce, alcohol, ice creams.

    If you can't/won't get diagnosed properly because you don't want the agony at least realise that you need to join the coeliac society and get the safe list book. Only eat what's in there and make sure you have a seperate toaster, seperate butter, seperate utensils, your own cupboard to keep gf items in. You need to realise cross contamination is just as bad as eating the stuff. One crumb of bread in your butter will flatten the villi in your stomach and you'll have to start the recovery process all over again.

    Reply
  8. Glitter girl

    My daughter has coeliac disease, she's 10. We're in year 2 now and still leaning. I can understand those people who are in agony and cut out wheat and pasta as I have a friend like this and the fear of eating these items for six weeks before her blood test filled her with dread and she was unable to do so and therefore she came back as a negative. She now consults me as to what she can eat.

    Please don't guess, gluten hides in many things, including oats unless you're intolerance has been tested. But you can get gluten free oats. At the very least join the coeliac society and get a book that lists safe items. My daughters dietician was quite clear that unless it's in the book don't eat it.

    Gluten hides in so many things from crisps, gravy, alcohol, soy sauce, pre grated cheese, kellogs, cadburys, smarties, mustard,,brown sauce. Even one crumb of bread in your shared butter will contaminate it and cause you bother. Sooooo if you can't bear the pain of gluten in getting a test make sure you research what your eating before you eat it and make sure everyone understands contaminating your food is by stirring your gf pasta with thier spoon they've just stirred thier normal pasta with is a no go option.

    We have seller are butter. Seep rate cupboards. Seller ate toaster. Sepetate utensils. This is someone's life your playing with, so make sure you are very careful and treat this seriously.

    Reply
  9. Alex G

    Thanks for your comments. I have to disagree with your point that cross-contamination is 'just as bad' as eating gluten. A crumb of bread can make many coeliacs ill, but an isolated incident will not flatten villi. Villi are in the small intestine, and not the stomach. I do agree with your previous points to keep everything separate – butter, toaster etc. Thanks again – Alex.

    Reply
  10. IrishHeart

    Excellent article, Alex and this is something so many of us have been saying over here to "GF dabblers", but it often falls on deaf ears. We have a plethora of pseudo-docs who "diagnose" people with gluten and dairy intolerance based on bogus testing and "hunches". And these people still do not feel well. When I suggest that maybe it is because they really are not "diagnosed with anything yet, they get angry. Sigh. I keep trying. Thank you for saying all of this so well!

    Reply
  11. Alex G

    Thank you, IH – nice of you to go through my back catalogue of posts I've forgotten about and comment on them! 🙂

    Reply
  12. IrishHeart

    Well, it was on the side bar and caught my eye! 😉

    Reply
  13. Zoe

    This is good advice but sometimes you can go to the doctor and get nowhere. My 2 year old has multiple food allergies. I spent 9 months taking her to different doctors, only to be told that she was a naughty baby, or it was just a tummy bug, or that it was normal, or one spectacularly useless on-call doctor who shrugged his shoulders and said 'it's a mystery'. It was only AFTER I did a full exclusion-reintroduction diet by myself and found that gluten (among others) was a problem, that my GP would actually acknowledge that she probably did have food allergies! So now I am in the difficult position of having to choose whether to do coeliac testing or not, which means 6 weeks of misery and no sleep for the whole family. So yes, you should go to the doctor if you suspect gluten is a problem, but we also need better training for doctors to recognise these issues! For now we are treating her as if she is coeliac, so no gluten whatsoever.

    Reply
  14. Alex G

    You're right, you're right … I've heard lots of similar stories, re: GPs. Seeing a private dietitian can be worthwhile in such a situation, but the medical syllabus does need to get on top of the issue of food hypersensitivities – not enough doctors know anywhere near enough …./

    Reply
  15. Pingback: Glamour Does Gluten. Badly. | Allergy Insight

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