Friday, 15 May 2015

Want my advice? DON'T give up the gluten!

I've heard that giving up gluten is trendy. I've heard that people are giving up gluten to be 'healthy,' I've heard that people are giving up unnecessarily. In fact I've heard all kinds of things about gluten, but one thing I KNOW is that it doesn't like me! And yet the one piece of advice I'd give anyone who's thinking of ditching it is... DON'T - not yet anyway - not until you've seen the Doctor! 

If gluten truly doesn't agree with you, it could (but might not) be down to a condition called Coeliac. This isn't an allergy or an intolerance but an autoimmune disease. If you have Coeliac Disease you need to know - it's not just about cutting down gluten or even cutting out gluten, it's about adopting a totally different way of life - one CRUMB containing gluten a week is one crumb too much. An individual with Coeliac Disease needs to find out, because if not, if it's left to itself, it could do you a lot of harm in the longer term. Osteoporosis and a rare form of bowel cancer are just two of the medical conditions to which it could lead.

Personally, I wouldn't give up the gluten anyway... if I could possibly help it, I love fresh bread, baguettes, cake, doughnuts, pastry... however, nowadays, even a trace of it can have a disastrous effect on my body which I'd much rather avoid. BUT it wasn't always this way...

Good job you can get some great gluten free alternatives, but it'll cost ya!
Once upon a time, I could eat gluten fine enough - until I caught a tummy bug, or so it seemed. However, oddly enough the 'tummy bug' didn't go away. So I went to see my (then) Doctor. He, advised me to cut out the gluten and see if it helped - he said it could be a temporary intolerance resulting from the tummy bug (this much is true, this can happen). Having had some horrific dizzy spells, caught short moments (complete with soiled garments) and tummy pain, I was happy to oblige - particularly when my body improved quite quickly after cutting out the gluten. 

Unfortunately for me, my Doctor was not au fait with procedures. It was only after I'd given up gluten that he sent me for a blood test! What I didn't know then, but do now, was that it should have been the other way around. I should have had the blood test first, as otherwise, without the gluten actually in my body, the Coeliac blood test wouldn't work. Doh! Another one of those things which I wish I knew when I was younger!

In fact to register a proper result in the blood test, you have to have been eating gluten everyday for around six weeks!!

'Simple!' you might say, 'just go back to eating the gluten for the six weeks then...'

Hmmm! Not so simple! Not unless I want to be permanently glued to my toilet seat. This is not really possible when you have a five year old daughter to look after, get to school etc. and a home to run! 

The problem with giving up gluten altogether, when I did, is that my body seems to have become more sensitive to it than ever it was before - cue worse reactions!! From the way my body responds when there is a slip-up, I can only guess at how it would respond to full exposure. See my problem? The only way I can see myself operating as normal, under these conditions, would be to walk around with a portable commode strapped to my behind - a comedy  moment maybe, but NOT a good look! :(

At some stage, I know I need to have 'the test,' I will have to face the gluten - just so I can get the confirmation (or maybe not - some people appear to suffer the same symptoms without the disease, but that's another story) 'cos then I can get access to the right monitoring etc. but I think that it's just going to have to wait, remain in limbo, 'til 'Baby' is older and can fend for herself a bit more. 

If this rings a bell with you, please do as I say, and get the test first. 

Don't do as I did... you'd only regret it!


To find out more about Coeliac Disease, take a look at NHS Choices or Coeliac UK's website


  1. This was also my experience, it is very frustrating. I wish that I had been tested for coeliac disease when my symptoms were at their worst. I completely agree that there is no good time to reintroduce any food that is giving you symptoms once you have stopped eating it.
    It is positive that Coeliac UK and Allergy UK are working so hard to educate both the public and importantly the medical profession to stop this happening in the future.

    1. It's amazing how many people have the same story to tell! I was so pleased to see that Coeliac UK now have Caroline Quentin to help spread the word. She was brilliant on ITV's 'This Morning' programme a few weeks ago. :)

  2. Very well said. I know too many people who may well have coeliac disease but have decided to go it alone rather than face testing and, like you, have found the symptoms from that point onwards are far worse when they eat gluten than they were before. I was diagnosed coeliac in 2003, several months after a bout of food poisoning from which I never seemed to fully recover. My Dad had already been diagnosed a few years earlier, so I was diagnosed quickly (FP in March, diag September), but I'm not sure how I would have coped if I had given up gluten without proper testing. If/when you do go through the six-week challenge (they need a new name. It sounds like a game show), try to make sure you can lie down a lot. Sometimes, when I was gurgling and rumbling away, laying on my right side was the only thing that helped me feel a little better. And remember, it's worth it in the long run for the level of support you get as a diagnosed coeliac (if you are).

    Vikki Cook

    1. Thank you and thanks for the advice! Lying down (given the opportunity by LO) I CAN do! :)