Why being strict with the Gluten Free... - Gluten Free Guerr...

Gluten Free Guerrillas

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Why being strict with the Gluten Free Diet is SO important.

Robyn-GFGsNutritionist profile image

I have heard recently (from several sources), that post-diagnosis many people with Coeliac Disease are still eating gluten regularly ‘so their body doesn’t reject it’. It seems to me, that this is some sort of urban myth, based around the idea that if you eat some gluten, you may have to suffer with a few symptoms for a few days, and then everything goes back to normal. I’m keen to bust this myth!!

Let me start by stating that for some people this may seem to be the case. Because nobody actually DIES from Coeliac Disease, right? WRONG! This disease does kill people, not (usually) dramatically and instantly like the anaphylactic reaction to peanuts or shellfish, but in a more delayed, insidious way.

DOES MY BODY REALLY ‘REJECT GLUTEN’?

A study in one of the world’s premier scientific journals, The Lancet, in 2001, actually states the following:

“Non-adherence to the GFD, defined as eating gluten once per month, increased the relative risk of death 6-fold.”

Yes 6 fold – that's a pretty scary number. So what is this about your body ‘rejecting it?’

Firstly, if you’ve been diagnosed as a Coeliac, or you have Non-Coeliac Gluten Sensitivity your body has already ‘rejected’ gluten. It’s a done deal.

Coeliac Disease is an auto-immune disease, it is not a food intolerance, for people with CD or Gluten Sensitivity, gluten triggers the immune system to view parts of your own body as ‘foe’ and attack it, creating inflammation and damage to the body itself.

You may have variations in the severity of the reaction you experience, but gluten sensitivity is life-long and it is complete. In much the same way that you can’t be ‘a little pregnant’, you cannot, as a Coeliac, have ‘just a little gluten’.

Secondly, once you have an established immune response to gluten, your immune system is on red alert for it for the rest of your life.

Your immune system actually creates ‘memory cells’, specifically for the proteins that comprise gluten, and these memory cells are hyper vigilant and ready for action! This means that once you stop eating gluten, and as your body begins to heal, you will have a much more exaggerated reaction to a much smaller amount of gluten.

In fact, once you have CD or non-coeliac gluten sensitivity it only takes one one-thousandth of the ‘original dose’ to have the full scale immune reaction. Imagine that. Now, if you are completely gluten free, you are quite likely to notice this reaction, if however you are not gluten free, or you are cheating on a regular basis, you already have this reaction activated. The symptoms you are creating with additional doses of gluten may not be as noticeable to you, because they are just adding fuel to an existing fire, as opposed to lighting a brand new one.

This should not be confused with some sort of tolerance to gluten!

Thirdly, the inflammatory response caused in your cells by eating gluten, can last up to 8 weeks from a single tiny dose. You might not notice the effects of this inflammation, but your body certainly does! Just because you don’t ‘feel’ a reaction if you eat or drink gluten after diagnosis does not mean you aren’t being damaged by it.

There seems to be some debate about the varying degrees of ‘sensitivity’ found among Coeliacs, but actually everybody who’s immune system reacts to gluten is ‘highly sensitive’, although the symptoms differ from person to person.

Another scary thing, is that there isn’t really a correlation between the amount of damage done to the body and the severity of the symptoms. It is possible to have total villous atrophy and feel completely fine, and by the same token to be incredibly ill long long before the damage done is as obvious as TVA.

WHY CHEATING ON A GLUTEN FREE DIET DAMAGES MORE THAN JUST YOUR GUT

Urban myth #2 is that Coeliac disease is just a disease of the gut. This idea is completely outdated and, quite frankly, wrong. CD is a systemic condition, so let’s think of it in terms of what damage it can do to the rest of your body.

The inflammation and immune reaction caused by a single dose of gluten (let alone 2 weeks of eating all the pasta and pizza possible), can cause serious damage to every single tissue in your body.

Gluten can damage your brain and nervous system, organs such as your liver and heart.

It can effect endocrine glands such as your thyroid. In fact, there is such a strong correlation between Coeliac Disease and Thyroid Disease that NICE Guidelines in the UK recommend screening all Thyroid patients for Coeliac Disease.

And while it’s discussed less at the moment, which is not to say it’s less important; gluten can damage structural tissues such as your blood vessels and the receptor sites on your cells which are so very important for hormone function, healthy mood and mental/cognitive function.

This damage can accumulate over time, without you really noticing it. In fact, the first sign you may have that something is awry, is when things have snowballed to the point of disease in the affected area. Be that the diagnosis of another auto-immune disease, or a cancer, a ruptured liver, or symptoms of dementia.

CHEATING VERSUS LIVING GF LIFE TO THE FULL

‘Cheating’ on your gluten free diet, is very short term thinking. You may just suffer some digestive discomfort for a little while, have a headache or itchy skin for a few days, or feel tired. What you can’t see is the damage that is being done to the inside of your body and your cells by your gluten ‘treat’.

But if you think in the longer term, cheating as a Coeliac is just not worth it. Resist that freshly toasted ciabatta, because not giving in to that impulse is very likely to save your life, or your health, further down the line.

Is that proverbial ‘ moment on the lips’ really worth potentially reducing your lifespan by years?

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9 Replies
Mushymom profile image
Mushymom

Oh wow, thank you Robin! Excellent piece! I think though that for some of us with additional food intolerances, that they also create their share of damage down the road. Heck I guess I'm of the opinion that if it hurts, don't do it! It's so not worth it. :(

Again, thank you very much! :-)

philaustin profile image
philaustin

Thanks from me too Robin. A masterpiece. After the 'chef' on BBC's Saturday Kitchen bragged about his gluten binge every three months to keep his body used to it this is exactly the warning that we need to 'deliver all of us from temptation'.

The problem with having a little bit of gluten now and again, as you point out, is that you might not notice any violent effects but the damage is still done.

When the damage reaches a point where it gets serious and you DO notice it, its going to be too late.

Can't you get the BBC to read out your statement on its complaints programme?

FionaGFG profile image
FionaGFGAdministrator

Psst guys - not eating gluten doesn't chance ya sex...it's Robyn with a y...

Great comments to a great post! More news on our complaints to the BBC and other bodies too.

SillyYak profile image
SillyYak

Such a good read! Thank you Robyn. It puts that foolish TV chef's comments into perspective doesn't it? If only more people realised that you can't just have a bit of gluten. My friends don't seem to understand that gluten is auto-immune and often ask how I can stand not eating cake and going gluten free?! I've learnt to ignore it or explain myself. Sometimes I think if only I had £1 for every time I've heard that. I'll point my friends to your blog post in future!

TheReflexRoom profile image
TheReflexRoom

Ah SillyYak, I hope you've discovered the special secret of GF-eaters - that going GF doesn't have to mean 'not eating cake' ... !! ... and can in fact mean eating cake that is GOOD for you, as opposed to the over-processed, sugar-loaded, nutrient-depleted-tasteless rubbish 'enjoyed' by all those on a 'normal' western diet ...! I love making - and eating - my own cakes - chocolate beetroot brownies, Spanish Seville orange cake, courgette cake, carrot cake ... the list goes on, and all made with GF flour and a healthy helping of vegetables, nuts rich in good oils and little or no empty-calorie-sugars. Those gluten-gobblers, they don't know what they're missing ...

Jacks profile image
Jacks

I can't imagine any coeliac wanting to 'cheat'. Who do they think they are cheating - the 'Grim Reaper'? It took me decades to get a diagnosis of why I was ill. It does explain why doing a 'gluten challenge' prior to biopsy made me so ill.

in reply toJacks

Hi Jacks it is being in denial as some coeliac crave the foods that are forbidden and see the occasional cake as a treat!!! like you making myself ill is not a treat nor to be recommended so I agree 100% with you.

Jerry

pretender profile image
pretender

Getting rather confused now.......your a diagnosed coeliac..........do not eat gluten or you will be ill or develop other issues........so you go on a strict gluten free diet?????...........a diet that contains gluten....this is hypocrisy.

I am a diagnosed coeliac (twice with a confirmation investigation plus 45 years remission)and have to avoid anything from a gluten source or suffer and there are many like me.

The Gluten Free Diet is not the treatment for Coeliac Disease it is for those who can tolerate it, so you do not know that it not affecting your insides.

tmoxon profile image
tmoxon

Hi Robyn I just wanted to add my thanks for your piece, well written and very informative. Although I have CD I particularly like the way you have included NCGS which the medical experts ( well some of the enlightened ones anyway ) are starting to realise is just as dangerous as having coeliac disease. thanks

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