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?
The difference between coeliac disease and gluten sensitivity
Gluten free labelling in the UK. 