Why I Hate* Coeliac Extremists

*dislike immensely

Now I know hate is a strong word, so perhaps ‘dislike immensely’ is what I need to go with. Either way, I am prepared to risk offending a sizeable sub population of coeliacs globally, because I really really struggle to cope with the type of narrow minded, rule obsessed, no risk coeliac who believes they have a mandate to bash all the other, apparently naughty, coeliacs out there into compliant submission to their risk adverse ways.

We’ve all met one. Or two. Most probably on-line. In a FB group.

There is almost a collective gasp globally when one poor unsuspecting coeliac (usually a newbie not used to the scorn and derision about to befall them) whispers in a FB group chat that they, in a weak moment, dared to pop a chip from a shared fryer into their mouth, or worse, ate a biscuit from a packet that had a May Contain statement on the back.

This is brain explosion stuff for the Coeliac Extremist.

It’s also actually their moment to shine.

A barrage of ‘how could you’ and ‘don’t you realise you are giving yourself cancer’ and ‘you are letting down the rest of us with your selfish behaviour’, or ‘you are playing russian roulette with your health my friend’.

And, my personal favourite, ‘just because you don’t get symptoms doesn’t mean you’re not KILLING YOURSELF!!!!!’

Heavy stuff. No its not global warming in its catastrophic scale, but its pretty darn close, apparently.

I am personally OK being on the receiving end of such rants, because I have now science-ed the heck out of their over-generalisations* and can adequately defend myself, but just in case you would rather avoid provoking this level of international shaming, I have created a helpful list of some of the key ‘No Nos’ likely to prompt on-line derision from the Coeliac Extremist…

You are:

Not allowed to eat in non 100% GF venues (‘not responsible coeliac behaviour’)

Not ever allowed to accidentally get glutened (‘reckless & bad example’)

Not allowed to use enzyme tablets (they are NOT a ‘get out of jail free’ card my friend)

Not allowed to have a shared toaster

Not allowed to buy packaged foods…must bake/prep everything from scratch (‘to have total control over what goes in your mouth’)

Not allowed to share joy over unhealthy gluten free finds

Not allowed to eat anything with a May Contain statement

Not allowed to eat a cake from a café if it had a gluten-infused cake on the shelf above, or heavens above, right next to it

Not allowed to have a good old fashioned whinge about your recent emotionally fraught dining experience or your in-laws who tell you its all nonsense (‘you can’t expect others to look after you’)

So basically, no fun. I mean please *eye roll

It is apparently the desire of the Coeliac Extremist that we live life in a carefully curated gluten free bubble. That we all become Martha Stewarts, whipping up fresh dishes from organic produce and we only trust food that we have prepped ourselves. I for one, would starve. I hate cooking. I also would die from the social isolation it would cause and the lack of foodie joy. Life would be miserable. I might have a healthy physical body but it would be at a huge cost to my mental health.

So I make different choices. Choices with minimised risk, due to diligent research, but choices that still do include risk. I WILL eat at a non 100% GF venue, I do use a shared toaster (have never been glutened from it), and I use to eat products with a May Contain statement (I don’t now because I sometimes now react to them, but I didn’t use to, and my bloods were clear). Do I occasionally get glutened? Yes. Do I have to go to hospital or spend a week on the toilet? No. So for me the cost benefit ratio is OK. I will take a well-managed risk. For others, it’s not worth it because their reactions are too severe. And so they do need to follow the list above.

We are all different. We all respond to gluten or gluten traces differently. Not all asymptomatic coeliacs are actually damaging their villi, especially not to trace amounts of gluten exposure through cross contamination*.

If one coeliac eats a chip from a shared fryer and then vomits up the entire contents of their stomach while another gets not only no symptoms but also has clear bloods and healthy villi, we need to accept that not all glutening is equal*, and that we CAN be OK with different choices coeliacs make in different situations.

So back off. Live your coeliac life your way and let me live mine my way.

And let me be clear, I am NOT advocating that coeliacs throw all caution to the wind and ignore medical advice to avoid gluten and not be aware of coeliac safe food prep. Not at all. The only treatment for coeliac disease is a life long avoidance of gluten. So awareness of coeliac safe food prep is very important to stay gluten free.

However, what I AM saying, is that we all have the right to manage the disease our way. Whether that means we take a little risk on occasion so that we can socialise, or experience some foodie joy, or engage with a new cuisine when travelling. It is our body. We know what will happen if our risk causes us to get glutened every now and again. We weigh up the cost benefit ratio for our mental health, and make a decision.

So what IS my takeaway here?

It is quite simply this.

It is time as coeliacs we decided that we would just support one another. That we accept that someone else might have a different way of managing their disease from us. That we don’t know what else is going on in their world, or how their body reacts to gluten, or even whether for their mental health they need social interaction or a bit of foodie joy in the moment more than complete 100% control over what goes into their mouth.

So to all of the Coeliac Extremists out there that feel they have a social mandate to bash other coeliacs over the head with their rule following risk adverse mindset, my message is this:

Let us live our life our way. We know our bodies and we know our overall health status.

So back off. Keep your judgemental comments to yourself and stop bullying others over their choices.

We all have to deal with enough not being able to eat gluten, no longer being able to be spontaneous, ever, and having to talk about our bowel movements with complete strangers. So please, please, don’t add on-line bullying into the equation.

Be. Kind.

*For more info please refer to my blog “Not All Glutening is Equal”, 7.2.2020 (with internal referencing to: Caio G, Volta U, Sapone A, Leffler A L.,De Giorgio R, Catassi C, Fasano A. Celiac disease: a comprehensive current review. 2019. BMC Medicine).

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