Are you a coeliac? Or are you 'living with coeliac disease'?

Had my first group appointment with the dietician yesterday. Actually there was 2 dieticians present, as one was taking over 'the groups of coeliacs'. Throughout the 2 hrs, they constantly referred to 'coeliacs' and I'm feeling a bit offended by this use of this language.

At work I'm hearing how somebody has a friend who's a coeliac.

I currently work with people 'living with dementia' and in the past I've worked with persons 'living with HIV or AIDs', etc.

I'm an individual who lives with coeliac disease. Call me a Canadian but please don't call me a coeliac, I'm much more complex than that.

Any comments?

23 Replies

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  • I agree that it's a bit odd. I tend to refer to myself as "I can't eat gluten - you know, wheat'n'stuff". It's a bit of a mouthful but as most people don't know what coeliac disease is, it seems sensible to me.

    I tend to think of it as a condition - I only get my lack of ease if I have gluten so I feel a bit of a fraud if I describe myself as diseased (which does sound unpleasant anyway).

    That said, I was diagnosed a year ago and I get less bothered by it know. I get more upset by the dratted supermarkets and restaurants that are, sometimes unnecessarily difficult.

  • In the scheme of things I don't think it's such a big deal. That said, when I was first diagnosed it did grate that I had suddenly got a DISEASE!

    On as positive, someone is taking an interest in you and I for one would assess them as professionals and decide how best to get the most help from them, whatever they decide to call me.

    I think there are bigger battles to fight, but I do empathise as I expect, but can't demand, that I be treated as a individual.

  • Hi Silver

    The word disease, I would agree has such a negative feeling surrounding it. I think it points to something in the body that does something different or unusual. It doesn't follow the regular pattern.

    Maybe our bodies are sensitive to an unhealthy substance that the rest of the world hasn't woken up to yet? Who knows?

    I'm so happy for your understanding but I still feel that, I have always seen people first, then issues they have, to persons throughout decades, and now, I will only make HCPs aware of the inpact their words have on me. I'm very diplomatic and seeing the consultant early next week (which I'm praying is routine following several biopies?), so I'll just have a quiet word. :-)

  • Hi MapleMamma.

    I completely understand your point of view and 'living with' coeliac disease would probably be better terminology and more politically correct.

    However, I am a Coeliac. I really don't mind using that term and in fact I like it better than having to say 'I have coeliac disease' (the disease bit sounds like it could be a little contagious to me!).

    If you think about it, many people with another autoimmune condition - i.e diabetes - tend to describe themselves as being a diabetic and it doesn't seem to be an issue for them. I guess it's personal choice at the end of the day.

    As you say, being a coeliac is only a part of who I am and as long as I know that, why worry? To the people I care about it doesn't matter (apart from when choosing a restaurant...) and to the people I don't care about, who cares!

    The main thing for me is about getting the correct medical support. It occurred to me yesterday that if I was a diabetic in the UK, I could go and see a specialist diabetic nurse. If I had Parkinson's Disease, I could see a Parkinson's nurse. So whereabouts can the Coeliac nurses be found...? :-s

  • RegalB, what a lovely point you make and I thank you for the laugh after the second para. I agree with all of the comments above in that it's easier for HCPs to speak about us and us to them but what if we're a diabetic, manic depressive arthritic coeliac nymphomaniac, for example? Which particular facet of our being defines us?

    I TOTALLY agree that we need a Specialist Nurse Practitioner for CD.

    The dietitians couldn't figure out from the label if the 'grocery bag items' were GF or not and had to 'consult' their notes. I was disappointed ;-(

    Honestly, I must be a nightmare to be around at the moment :-)

  • Re: the GF foods - Been there! I was pretty neurotic for the first few months too!

    I'm also chuckling over the thought of an arthritic nymphomaniac - I hope they have some good painkillers! They might need them to stay supple...!

    Seriously, it depends on circumstances as to which facet is most important at the time. Expecting your psychiatrist to successfully treat your diabetes or arthritis, for example; might lead to disappointment. Or telling the waitress you are a nymphomaniac probably isn't as relevant telling them you are a coeliac...! :-)

  • Neurotic indeed, thanks for the understanding. BTW I wasn't describing myself, rather I'm showing my distaste for labelling persons with any condition. I work in mental health and I've always been saddened when professionals refer to ppl by their condition. This is what is really bothering me. Being labelled and not being seen beyond that. :-(

  • I saw NICE guidelines recently and am sure you have to be 'under' the care of someone once diagnosed. It's why I groan when I hear considerations to give GPs control - when it took them decades to spot CD.

  • No it wouldn't have offended me at all, for me it's really no different to medical professionals calling those with diabetes, diabetic etc. It's just medical speak! In fact now you have me thinking about it, I'd rather they kept saying 'coeliacs' than reminding me I have a 'disease' simply because on a daily basis I really don't think of it in that way either. I just focus on the things I can eat and avoiding those that make me desperately unwell!

  • A Disease is an illness with a recognizable set of signs and symptoms. What's an illness... ok I guess it's just the use of terminology and it is early days. I actually have generally said, 'I have coeliac disease' but have found most recognising it and I'm comfortable with the word disease cause I work with disorders, syndromes and discuss Alzheimer's disease on a daily basis.

  • as henbur said as long as we fell better who cares x

  • I can see your point but let's not beet around the bush. Being called a coeliac (a medical condition)means if they mess up with your food it's only them to blame. Saying ow I can't eat gluten it's an allergy makes people think of it less. Step up and tell people its a real problem. Or your in the realms of the early days of nut allergy where people thought they were just a pain. I am a coeliac and trying to help inform people in my community how easy it can be to have something gluten free on their menus.

    to change perceptions it's down to each and every one of us to stand up and put that message out their.or else it's your toilet you will being seeing more often.not them.

  • I will continue to tell people that I have coeliac's disease.

    Interesting is the greek word for this condition, koiliokaki, which sorta means bad gut.

    In Greek, I will always have to say 'Exo'.. I have. The ancients are a bit more PC ;-)

  • To be fair to them - it does describe immediately what's wrong with your body. That's actually all they are interested in. They're not there to be your friend

    If your friends start referring to you as 'the coeliac', then worry.

  • But they are professionals and meant to treat me like an individual.

    Friends? I chatted with 2 of my best buddies today and I asked, 'Am I talking about all this gluten stuff too much lately?' While one took a deep breathe, the other calmly replied 'Yes' and smiled.

    Am I gonna have to go to monthly support groups and drink tea and make new friends?

    *chuckle*

  • I have Dermatitis herpetiformis the skin intolerance to gluten not met anyone who has it and stopped trying to explain it is the same as coeliac only it appears on the skin. In my case 80% of my body.So not sure how i would be referred to.

  • That must have been so frustrating explaining.

  • If you have DH you also have CD as you are not escaping the gut damage.

  • I understand what you mean. But I am a coeliac. People aren't HIV/cancer, they live with HIV/Cancer- there's no word for that like there is coeliac for living with coeliac disease. I live with coeliac disease and I am a coeliac. It's not derogatory and I'm sure it wasn't meant to be offensive. I prefer saying I am a coeliac because people take my gluten intolerances more seriously than me saying 'I can't eat wheat'.

  • Hi MappleMamma, I think that you're focussing on the wrong things here. As to those in the medical profession 'we' have coeliac disease, to a dietician we have CD so are coeliac who need a gluten free diet, to a caterer we need a gluten free diet, so on one level it is just a label.

    One thing that I don't think is given enough attention is the psychological impact of having CD and being diagnosed with CD is not the end of a medical diagnosis but the beginning of a roller coaster journey of mixed emotions for those of 'us' who have been diagnosed. And all coeliac or the vast majority have shared negative emotions after diagnosis that can seem irrational, like the fear of food prepared by others and the fear of being made ill by food prepared by others. Many coeliac go through a period of grieving for what they can no longer eat and have feelings like it's not fair and why me are common emotions.

    And I think that one of the biggest advantages of a support forum like this is that it helps us realise that we have these shared emotions and I think that Regalbirdy summed this up recently on the post about fatigue when she posted how glad she was the post had been made as it made her realise that she was not alone.

    I was diagnosed 20 years ago and I had severe anaemia and after 2 months I felt incredibly well and I embraced my new lifestyle with a vengeance then after just under a year when feeling well had worn off I had this realisation that this was it for the rest of my life and I struggled with these emotions until I put them in perspective.

    So how do I see myself and how do I describe myself well this depends on where I am but as far as having CD goes I am a coeliac and I NEED a gluten free diet full stop.

    And I think you need to tell yourself that you're a coeliac and that you're all right and at least you've been diagnosed and don't get hung up on labels.

    Thats my 2 cents worth.

  • Oh Jerry, you are my hero!

    I cried in the shower a couple hours ago repeating to myself 'I will not send you anymore than you can handle' over and over. My life HAS been a roller coaster and this is the cherry on the cherry, but I'm so glad to know and feeling so well it's amazing even me. This is overwhelming and there most definitely is a psychological need for any person making such a vast adjustment.

    Fear of food made by others? I'm almost ashamed to admit to a paranoid flavour to that feeling. I keep thinking someone might 'slip' me something, just to see. Not good, eh?

    Jerry you are a wise person, but I already had that figured out :-)

    Just call me Maple

  • Funny, I'm the other way round. I hate saying "disease" and would much rather people referred to me as "a coeliac".

    Then the whole "living with" thing, to me, makes it sounds like it's something that dominates my existence, rather than the occasional nuisance that it is when other people are feeding me.

    The rest of the time, even with the careful shopping and the bulk preparation of gluten free meals for the freezer, is just "my normal" and I don't dwell on it. In other words I don't think of myself as living with CD and I barely tolerate it living with me.

  • I think you're saying "they're THE coeliacs" (label). I understood a lot of work had been done to avoid objectification (eg. THE DISABLED).

    As for dietitians - any I've met next to hopeless and much money could be saved by replacing them with a virtual one. I heard one tell an old woman (who also had CD) she could eat pork pie if she just removed the crust! Enough said!

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