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A coeliac? Or a person with coeliac disease?

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How do you refer to yourself and how should others refer to you and your condition?

Identity is important and it’s a topic that’s been rattling around the Coeliac UK office for some time. We’ve heard from some very passionate Members that being called ‘a coeliac’ defines them too much by their condition and that being ‘a person with coeliac disease’ puts the person first, not the condition, which is preferable.

There are different schools of thought on this and we thought we had the balance right.

As the charity for those with the condition we choose to put the person first and that has always been our terminology and we have always encouraged others to do the same – for example when we comment on government policy documents we get this changed or when it comes to talking to commercial companies or clinicians we make the point that the term ‘coeliacs’ can be perceived as offensive. But we don’t refuse to report others using the term in our publications as we recognise that for some people, being ‘a coeliac’ is part of their identity. Healthcare professionals, caterers, manufacturers and other parties refer to people as ‘coeliacs’ as we know so many of you do too. We’ve so far not challenged this mix of terminology as we felt it reflects what our community does – so you may have seen a mix in things like the adverts in Crossed Grain and in Member quotes that we’ve used.

So far, our surveys have shown a 50:50 split in opinion, so it hasn’t shown a strong enough steer to say that what we’re doing isn’t right.

But how do you feel about it?

Should we refuse to publish others using the term ‘a coeliac’ or carry on making sure that we use our preferred term ‘people with coeliac disease’ and encourage, rather than enforce, others doing so? Or do you see yourself as ‘a coeliac’ and prefer this terminology?

We’d love to hear more from you on your thoughts, so please do comment below and let us know what you think.

5 January 2016

In: Community

15 comments on this post

Coeliac UK

Thank you for all your comments.

If you have any further comments please email them to us at website@coeliac.org.uk.

21 April 2016 11:40 AM

Hilary

How I refer to myself depends on who I am talking to. With friends and family who are familiar with coeliac disease and everything that means, I would probably use the term coeliac. But if I am having to explain it to strangers, especially when associated with trying to get a gluten free meal, then I will explain that "I suffer from coeliac disease..... " what that means and the implications of consuming wheat, barley or rye.

This makes the important distinction that I am talking about a medical condition - a disease - not a food fad or preference. I've found that if using the term coeliac with the uninformed I am lumped in with those who have made a choice not to eat gluten containing food, which can make a big difference to how hard restaurants will try to accommodate my needs.

22 February 2016 08:05 PM

Coeliac UK

Thank you everyone for giving us your thoughts, it’s been a good debate and useful for us to see how this issue affects you. So far we’ve learned:

Online poll: 47% in favour of ‘people with coeliac disease’, 53% in favour of ‘coeliacs’
Survey in Crossed Grain magazine: 45% I have coeliac disease, 47% I am a coeliac.

Through the blog comments, we’ve got a real mix. A clear preference from our community really isn’t clear so, as a result, we’ll be keeping our current way of phrasing your condition. We’ll continue to talk about ‘people with coeliac disease’ and we’ll not police others for doing something different as this reflects our diverse community. Thank you to everyone who took part in the debate.

12 February 2016 10:44 AM

sleeper39

I'm newly diagnosed but I do say "I'm Coeliac" and I can't say I feel this is demeaning at all . It seems precious to take offence but I respect other opinions . I'd hate someone to criticise if I called them diabetic or anaemic if their condition was widely known - sometimes people can take offence too quickly especially when there is intent to offend . Life's too short - maybe I'm still adjusting to my diagnosis ( an answer at last!!!) and relieved that my symptoms could be controlled..

2 February 2016 09:47 PM

reggie

Depends who I am talking to if I am somewhere informal I will say I have coeliac, but in a restaurant etc I say I have Coeliac Disease they seem to take it more seriously.

24 January 2016 02:47 PM

Maggot123

I prefer not to use the word disease. If I don't have gluten I am perfectly healthy! After almost three decades of unwittingly eating the wrong food I finally feel well and full of energy. And I want to celebrate that!
I tend to describe myself as coeliac. I don't think it defines me. I think it is empowering and separates me from those who choose to be gluten free as a lifestyle choice but can confuse the issue by giving mixed messages about what it is is ok for "gluten free" people to eat (pinching their partners non-gluten free chips; ordering a beer with their meal etc).
I try to be as unfussy as possible, so I contact the restaurant in advance and/or I quietly make the point to the person taking my order that:
"I have an autoimmune response gluten, which means my body attacks itself if I eat it. I need to be sure that I don't consume food containing wheat, barley or rye. This isn't a lifestyle choice for me: gluten attacks my brain. Even a tiny crumb is enough to make me ill for a whole year.
Are you able to ensure that my meal doesn't contain wheat, barley or rye even in tiny amounts? Is the chef able to ensure that my food is prepared in a separate area so it can't get accidentally cross-contaminated by gluten?"
If I receive a negative response, or have concerns that they don't understand, I don't eat there. It's as simple as that: my health is too important.
It cramps my style to have to be this thorough and to have to walk away sometimes, but I am learning to own it and manage it thanks to excellent advice and information on this website and from the NHS.

10 January 2016 11:31 PM

Liz

I am don't bother about what people call it. If were out for a meal I ask if they have a gluten free menu as being Coeliac I can't eat anything with Wheat Barley Rye or Oats .If they don't I choose something from the menu I know is safe .I usually take my own gravy and ask if they could make it for me. Most people understand.

9 January 2016 12:07 PM

coeliacandproud

Is this really such an important issue? I am a Coeliac like a diabetic. It does not define me in any way and helps others understand my problems quickly and easily. I also find that restaurants take my needs seriously, as opposed to just gluten intolerant.

8 January 2016 08:55 PM

Meltemi

I have a health condition. I'm a Coeliac. I do not have any disease. I cannot eat Wheat, Barley, Rye or for that matter, unfortunately, Oats. I cannot eat any food containing them no matter what form they take. I will never be able to eat any of them. Should I accidentally eat any of them I will be unwell for days and it will take many weeks for my gut to recover if I ate any of them. The concept of "Gluten" remains lost on the other 99% of the population. This is due to a lack of education at the school level.

8 January 2016 01:42 PM

Coeliac UK

Thanks for your comments on this blog post. It's great to hear your thoughts on this topic and we've been reading your comments with interest. We'd love to hear from more of you though, so please do submit any further thoughts by logging in to your account and commenting below.

8 January 2016 11:30 AM

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