Should people with coeliac disease ‘just shut up’?

I read an article this weekend by an allergy blogger titled ‘Coeliacs and Vegans can just shut up’.

At first I felt affronted by the title, unsure what I and my misbehaving gut had done to warrant such a statement.

So of course, my interest was piqued.

But actually, after reading the whole post in its entirety, several times over, it made me stop and think.

Because what allergy blogger and author Ruth Holroyd is saying in her article is largely true.

People with coeliac disease are, in some ways lucky.

(Please, bear with me on this one!)

Wait… coeliacs are lucky!?

When I was first diagnosed with coeliac disease I used to tell people about it and they’d tell me they’d never heard of a ‘celeriac’.

I’d mention gluten and they’d look at me like I was speaking French.

The ‘free from aisle’ was just a sad corner of the supermarket with some chocolate macaroons and a single loaf of rock-solid ‘bread’.

Nowadays though, most people have at least heard of coeliac disease – or their brother’s uncle’s cousin has it – and there are many choices for eating out.

Hell, we even have a whole aisle (or multiple aisles!) in the supermarket and a list of accredited restaurants which have been trained to cater for us and our needs.

And of course, I only have to navigate one allergen, rather than juggle multiple things.

For me, spotting gluten on an ingredients list is simple when it’s in bold – but what if you’re allergic to something more obscure, and less easy to spot?

I can only imagine how difficult that must be in comparison to avoiding gluten.

Eating out: a minefield for all?

So what about when it comes to eating out with coeliac disease?

As I found out over the past week, even menus which are specifically marked as ‘gluten free’ might not always be safe.

‘May contain’ warnings in the ingredients supply chain.

Kitchens with no safe gluten free preparation area.

Gluten free food fried in the same oil as gluten-containing food.

Poorly educated staff who don’t understand.

Poorly educated staff don’t want to understand.

The list goes on and again, I can only imagine with lesser-known allergens how difficult it must be.

But perhaps – and I say this while hiding behind my sofa cushion – we actually have things pretty good?

Yes eating out with coeliac disease is a minefield and a pain in the a*se sometimes, but actually, at least we can generally find somewhere to eat.

At least there some are restaurants with accredited gluten free statuses, with separate preparation areas and gluten free menus and well-educated staff.

And at least there’s not the fear that eating one wrong thing could cut my life drastically short.

Coeliac disease vs allergies

Living with anaphylaxis is not to be taken lightly at all. So yes, in comparison I do consider myself lucky to ‘just’ have coeliac disease.

I don’t have to worry about the fact that anything I eat, at any given moment, could kill me within minutes of it touching my lips.

I know for a person living with allergies, the feeling of fear and distrust must be infinitely larger than what I personally feel when I go out to eat.

In fact, if I had such an allergy, I wonder if I’d even be brave enough to go out and eat at all.

With the increasing number of ‘may contains’ and ‘we cannot guarantee’ and ‘we can’t cater for allergies’ appearing on menus, what does this mean for us all?

Is the risk any greater, or are establishments just too fearful of covering their own backs to even want to cater for people with allergies and intolerances?

There are many questions to be answered and I can only hope the rise in awareness will help to fuel a greater willingness to cater for allergy and coeliac customers alike.

Coeliac disease is not a choice

Unlike the steady rise of veganism though, coeliac disease is not a choice.

Yes, there was a bit of a ‘trend’ when Gwyneth Paltrow decided gluten free was a la mode, but that seems to have all died down a bit now.

Because apparently vegan is the new gluten free, darling.

And with it has come diminishing free from aisles and a fall in the amount of coeliac-friendly options when eating out.

I’ve honestly lost count of the number of times I’ve said I need a ‘gluten free’ meal and been handed a vegan menu.

The lack of awareness out there is disconcerting and tiring for everyone fighting against it.

But I have not chosen to have coeliac disease and I absolutely have not chosen to eat gluten free – it’s the only treatment for my lifelong autoimmune condition.

Eating gluten free is the only thing that stops my body literally attacking itself.

So I do hope to not be classed in the same category as someone who has chosen to be vegan, or someone who has chosen to avoid gluten.

I have no qualms with those people whatsoever, but it’s important to make clear there is a difference.

I think many people with a minor intolerance even have a degree of extra sympathy for us coeliacs, knowing they don’t have to ask for the kitchen to be scrubbed clean every time they go to eat out for fear of crumbs.

Because like someone with an allergy, I do have to be careful about things like cross contamination, as well as just what I eat.

Cross contamination is no joke

For me, cross contamination will often mean a week or so recovering from symptoms, feeling pretty rubbish and hating myself for not grilling the server enough.

It will not cause me to drop down dead.

But I am acutely aware that once my symptoms die down, the damage may linger on.

It can take six-to-18 months for a coeliac gut to recover once you start a gluten free diet.

So if I accidentally ‘get glutened’ at a restaurant every six months or so, does that mean my gut never fully heals?

Could that mean I’m more susceptible to long-term risks of osteoporosis, infertility or even bowel cancer down the line?

The answer is, I honestly don’t know. But I don’t want to risk it.

And while I know this is no way comparative to an anaphylactic reaction to an allergen, it’s still a worry that burdens my mind on a regular basis.

So when I see places offering gluten free menus which transpire to have a ‘may contain traces of gluten’ warning, I do worry.

Not just for myself, but for the people who’s coeliac disease symptoms are so severe that they often end up in A&E, or in pain for weeks or months just from one crumb.

And just as much for the ‘silent coeliacs’ who may not get any symptoms and are unaware of the consistent damage being caused.

And of course for all the customers who cannot even tolerate gluten below 20 parts per million (the UK recognised ‘gluten free’ limit) for fear of anaphylaxis.

I think what I want to say is, despite the fact our symptoms may differ in type and severity, it’s still an issue we all battle on a disappointingly regular basis.

So, should coeliacs just shut up?

To be honest, I don’t think we should.

I’d much rather we worked together to make the world of eating out a safer place for all allergies and intolerances alike.

But Ruth’s article has definitely made me stop and appreciate how easy we gluten free-ers have it compared to someone facing the fear of death from multiple allergens, every single day.

I know some people may disagree.

But for me, as a veteran coeliac, I have found my own little gluten free world a lot easier to navigate than it’s ever been.

Yes, I will keep shouting about diminishing free from aisles because if ‘free from’ foods are being replaced with vegan foods laced with ‘may contain’ warnings, that’s bad for us all.

Because I like to think of us all as one big community with enough power to put some real pressure on businesses if we band together.

And having had coeliac disease for so long and spoken to people across the globe, I do recognise how incredibly lucky we are to even have free from ranges in the first place here in the UK.

Yes, I will keep joking about the fact I can only eat chocolate brownies in coffee shops, because I know it puts a smile on people’s faces.

I’m not doing to rub anyone’s face in it.

I’m not being ungrateful to the businesses who are trying to at least provide something I can eat.

I am certainly not doing it because I don’t realise that in relation to some conditions, I’ve got it lucky.

I am doing it to bring a little joy to what can otherwise be an extremely daunting an isolating illness, in the hope I can bring a smile to someone struggling with their diagnosis.

And because maybe, a business owner somewhere might read it and think about offering something a little different.

We’re in this together

Like allergies,I want to make abundantly clear that coeliac disease is also not a choice.

So let us all keep putting pressure on caterers and supermarkets, and maybe together we can actually make a change for all of us.

And Ruth, if you ever need an over-enthusiastic and sometimes-slightly-aggressive coeliac to have your back fighting the allergy corner, please know you can always call on me.

To greater understand what life living with allergies is like, please read Ruth’s article, ‘Coeliacs and Vegans Can Just Shut Up’ here.

It’s also, co-incidentally, Allergy Awareness Week (May 26-31) which you can find out more information about here.