A recent poll on Instagram revealed that there’s still a significant number of dancers believing that it may be better for them (or us, in general) to cut out gluten. And I can’t blame anyone – because the way it is talked about gluten, gluten sensitivity, and Coeliac Disease can easily make us believe that gluten really isn’t good of us humans, and doing gluten-free sounds like a much better option.

Like so often, life – including the development of a certain health condition – is far more complex and nuanced than news in the media or posts on social media can make us understand. And here I am to change that: I am honestly so tired of dancers not learning enough about their bodies ever. That dance education puts so much emphasis on using the body instead of understanding it as well, nurturing it, and ultimately being able to maintain it. Their bodies, the only instrument they have for the entirety of their career. Can we make that make sense? So, I believe, it doesn’t come as a surprise that dancers today still believe sensationalist headlines, quick fixes, or a one-size-fits-all approach. It’s time to change that.

May is COELIAC AWARENESS MONTH. And if that isn’t the perfect moment to talk about gluten, gluten sensitivity, and whether or not we’d all be better off by cutting out gluten from our diet. Let’s break it down bit(e) by bit(e).

Coeliac Disease is a very complex disease, and one we still don’t know all aspects of. That is what probably makes it a bit confusing – and so what’s written about Coeliac Disease tends to be oversimplified and overgeneralized:

Do I need to have a certain genetic predisposition to be gluten-intolerant? What does predisposition even mean? Many of the diseases and illnesses we see today have more than one cause – and they become only clinically relevant (= you will experience symptoms and require treatment) if more than one cause influences your body’s functions. It often means that you may carry genes that code for a specific conditions, but that other factors influence these genes in a way that the disease may never become clinically relevant (or remains hidden for a long time, or maybe even all your life long). Think of yourself and wanting to be the best dancer you can be. The version of you that will find themselves with a good teacher and in a nurturing environment (aka not relentless, as so common in dance) will certainly develop into the best dancer they can be. Same you but different environment: A teacher who uses outdated teaching styles, plus a relentless environment. It’s not going to make you feel great, will put a lot of stress on you (mentally and physically) and – worst of all – while you still have all the talent (= predisposition) for dance, you will not develop into the best dancer you can be. Ouch, that hurts to think of it that way, right? It’s quite similar with Coeliac Disease: Your genetic predisposition will only show if the environment you live in will enable it. So, what does that mean?

What kind of environment makes an individual’s genes ’act up’ and present as a full-blown, clinical Coeliac Disease? I honestly wish I could answer that to a tee. But we don’t know all the details to fully understand the development of the condition. What we know is that an immune reaction needs to be triggered: That can be a viral infection for example (that one probably makes total sense) with the immune system sort of overreacting, and never getting back to ’normal’ or ’before’. But reactions of the immune system can also be triggered by stress, restrictive diets, or traumatic life events (including loss of a close family member (parents, sibling….) just as much as onset of puberty and higher levels of reproductive hormones (not a reason to delay puberty though, the repercussions will be just as serious, of not more). All of us will experience a multitude of infections during our lifetime. All of us go through puberty. And almost all of us will experience stress and loss. There is a good level of awareness that we need to take care of ourselves, that most of us can work on building more resilience, but also life seems to get more and more complicated (or simply harder – think of dancers trying to find a job atm, it appears to be harder post-pandemic than for a very long time prior to it) for many, and with that, stress levels rise.  The one factor I haven’t mentioned yet is that Coeliac Disease can only develop when an individual is exposed to gluten. AHA – I hear you! So, why don’t you just tell us that we should all cut out gluten because it seems obvious that without gluten we wouldn’t know Coeliac Disease at all. Hear me out: That last bit ’that without gluten we wouldn’t know Coeliac Disease at all’ is true. But that doesn’t mean that everyone needs to cut it out, or that everyone ever exposed to gluten could potentially develop the disease. Let’s quickly recap: You need a genetic predisposition, something that not everyone has. The number of individuals with a genetic predisposition in the general population is relatively high (30-40% – this number accounts only for the haplotypes though, we do not have numbers about percentages affected in the general population regarding the newly identified genes), but despite the exposure to gluten for most of them, only 3% of them eventually develop Coeliac Disease (giving us a hint that additional genetic factors are highly likely to be required to develop the disease). The rest of the population is not at risk of developing the condition. If you ask me know of they are the lucky ones, the ones with fewer viral infections, less stress and fewer traumatic life events? I don’t know (and no one else does; that would be a research aspect that needs to be looked into). They can eat any food containing gluten (bread, grains, pasta and so on) without being at risk. And we need to acknowledge that the foods containing gluten are often rich in macro- as well as micronutrients. And esp. grains have been one the most affordable ways to feed the ever growing world population.

When someone cuts out guten without knowing if that’s necessary, they often cut out a source of protein, minerals (e.g. magnesium, calcium, potassium, and iron) and vitamins like vitamin B6 (part of our immune system’s ’wellbeing’) without replacing them. Effects on health will show up sooner or later.

Am I at risk if someone else in the family has Coeliac Disease? If you have someone on the family with Coeliac Disease, yes, you have a higher risk than someone without. So far, the risk seems to be higher for daughters and sisters, not for sons and brothers though. Does it indicate that those HLA-haplotypes that can be involved in the development are inherited from our mothers? Maybe, but science is not yet conclusive in that aspect.

So, what happens then that the environments (stress, infections etc.) makes individuals develop Coeliac Disease as we know it? It’s how our genes are stored in our cells. I’ve talked about this before when I wrote about restrictive diets and how they can change the way our genes are expressed (read more here). Because all our genes, stored together as chromosomes in the nucleus of every single of our cells, have something like an outer shield that protects the inner part, the famous DNA-helix (which sounds like a pretty good thing, actually!). It can be super helpful, because if we live in an environment that nurtures us according to our needs, we can carry faulty genes but we won’t even notice; the protective outer shield won’t allow them to do harm to us (aka ’to be switched on’). But the opposite can be true as well, and if we the have a genetic predisposition for a specific condition (like Coeliac Disease), we get to experience it as full-blown clinical condition if we are exposed to triggers in our environment that disable this protective shield. Current scientific models have an alteration of the immune system’s response as basis. That means, the conditions of our environment (e.g. stress, diet, sleep, reproductive hormones, to name a few) affect our immune system in ways that it changes how it works. Think of all the bacteria (or our microbiota in general, we have more than only bacteria in our guts, even if they are dominant) in our guts; they produce chemicals and neurotransmitters all day round, and these chemical compounds are part of us functioning properly. If they now get disturbed, it’s possible to imagine that they may influence our daily functioning in ways that aren’t overly pleasant, isn’t it? There are more ways than influences on our gut bacteria, but the gut is a good place to start because about 70%-75% of our immune system sits in the gut. And that means, there’s a whole array of cells that can be influenced by our environment, ultimately changing the protective outer shield around our chromosomes. The worst-case scenario then is that these changes ’switch on’ a faulty gene, and we suddenly get to know its effects. Think of it as the protective outer shield previously having told the gene to STFU, but these changes now destroy the outer shield as it was, and so we get to hear (and feel) the noise that this gene (or a combination of genes) can make.              

It’s often not so much about the DNA helix, but about these ’balls’ around it. Think of them as a protective shield, that – unfortunately – can be altered by environmental influences (infections, stress, restrictive diets, even puberty), and then allowing faulty genes to make us develop a disease. The ‘balls’ (they’re basically chemical compounds) are part of what we call epigenetics (the influence of the environment on our genes).

And what’s with non-coeliac gluten sensitivity? I feel bad when I eat foods containing gluten. You’ve got a point here! This is another big topic, and I’m sure I’ll need to write a separate blog post about it, but here’s a summary of how (or why) it is possible that you may react with varying degrees of sensitivity to foods that contain gluten (and you feel much better when you eat a gluten-free diet): What’s really interesting here is that scientists have found changes in structures within genes that aren’t coding for e.g. proteins that form antibodies, but these structures (are sequences) aren’t coding at all. So why have them at all? Aren’t they entirely superfluous? Well, it sounds like, yet they have an important role in regulating cell metabolism nevertheless. And the regulation of cell metabolism can mean that the protective shield around our DNA can be affected by these regulations. And that means we can experience changes in our body’s response to carbohydrates, proteins, and/or dietary fats, changes to our immune response, or even our intestinal permeability (the ability of nutrients and or pathogens to access areas of the body where they really shouldn’t be. The very interesting aspect here is that individuals with non-coeliac gluten/wheat sensitivity often present with symptoms that seem to be quite similar to irritable bowel syndrome (IBS). In this case, certain components of our food that are NOT gluten could potentially trigger the symptoms (e.g. the so-called FODMAPS, fermentable, oligo-, di-, and monosaccharides and polyols). These individuals usually do not carry either of the HLA-DQ (2 or 8) haplotypes. It is best to discuss all these aspects with both a doctor specialised in either genetics and/or gastrointestinal disorders, and a dietitian as well. If there’s one thing I can’t recommend, then it’s trying to figure it out on your own. 

SOMETHING REMARKABLE! Of the genes identified in Coeliac disease, many are associated with other autoimmune diseases; some with Diabetes Type 1 (the autoimmune type where the pancreas stops producing insulin as the immune system attacks the cells that produce insulin), others with Graves’ disease (an autoimmune disease of the thyroid; the immune systems attacks the thyroid and the thyroid’s response is to produce much more thyroid hormones than needed, leading to severe health consequences), rheumatoid arthritis, ankylosing spondylitis, multiple sclerosis, psoriasis, inflammatory bowel disease (IBD), and more. Someone with Graves’ Disease or Systemic Lupus Erythematosus (SLE) for example is likely to not only have one (or both) of the haplotypes associated with Coeliac Disease (HLA-DQ2 and HLA-DQ8) but is likely to also carry another haplotype, HLA-DR3. HLA-DR3 and related HLA-DR haplotypes have been identified as ’bad guys’ with an ability to change someone’s immune response. The ‘sibling’, HLA-DR4, has been shown to be associated with rheumatoid arthritis, type 1 diabetes mellitus, and Hashimoto thyroiditis (presenting as underactive thyroid).

TAKE AWAY FROM TODAY: Some ’gurus’ and influencers claim that we should not expose ourselves to gluten – ever. Scientific research has discussed the role of gluten in triggering changes in the immune system, but while the exposure is a ’must’ for the condition to develop, there are so many more people carrying genes potentially involved in the condition that never develop it, so that a sound and ethically correct decision is to not recommend gluten-free diets for everyone . There’s quite a high chance that you’re cutting it out for nothing – and it is often much harder to meet macro- and micronutrient needs on a gluten-free diet than it is to meet them on a diet including gluten. And if you ask anyone affected by Coeliac Disease, a gluten-free is not always easy to balance, after all, gluten is a protein, and replacing it in foods in no small feat, esp. as it’s usually not replaced by another protein but by carbohydrates or fat, or both. That’s why it happens that individuals with Coeliac disease find themselves on quite an unbalanced diet (in terms of the three macronutrients carbohydrates, protein, and dietary fats, but often also including micronutrients). Apart from gluten-free food often being quite expensive – and according to current data, yo’d be better off spending your money on things that a clearly good for you (or in medical speak, where the outcome isn’t entirely unclear – or would you invest in dance shoes that are helpful for about 1% of all dancers but you don’t know if that is the case for you?). 

Please note: This blog post focuses on the genetics and epigenetics of Coeliac Disease and gluten sensitivity. The health consequences of Coeliac Disease, as well as signs and symptoms of Coeliac Disease and non-coeliac gluten/wheat sensitivity will be part of the soon-to-open new nutrition area here on this website.

Recommended reading

Sallesse M, Lopetuso LR, Efthymakis K, Neri M (2020). Beyond the HLA Genes in Gluten-Related Disorders. Front Nutr;  Nov 12:7:575844. doi: 10.3389/fnut.2020.575844. eCollection 2020

Gondi E, Meneveri R, Barisani D (2022). Celiac Disease: From genetics to epigenetics. World J Gastroenterol; Jan 28; 28(4), 449-463. doi: 10.3748/wjg.v28.i4.449