Although I am a coeliac I do not like to think of myself as a sufferer-just wondering why you describe yourself like this?

Hiya,

Sometimes when i'm endlessly reading labels whilst shopping (particularly when i was first diagnosed before the 'free from' range came out), or trying to explain to busy/non caring staff in restaurants/cafes, or trying to get Gluten Free food for a long hospital stay,  or on a long plane ride when vegetarians or jews and muslims are getting their veggie, kosher and halal meals but they can't be bothered to supply us although it's a medical necessity and not a lifestyle choice......... or Sometimes when i actually want to join in on a works function or go to a party (yeah, i know) and not have to take my own food or feel like the odd one out because no one has bothered to cater for me but the vegetarian is ok thanks but the coeliac was too much like hard work to cater for.

Or when we have to deliberately poison our kids with gluten before they can get diagnosed. Or when we're on a long car ride with mates, and they can stop off for a quick snack and we can't, i think then we suffer too don't you? What about drinking an ice cold beer without paying something like £25 a crate and another for postage because no one stocks it?

Or what about when we get early menopause, osteoporosis, neurological problems, diabetes, teeth and eye defects (just a few of the illnesses manifest in Coeliacs), or watching ourselves nearly dying before hopefully being diagnosed (some of us don't make it, at least 2 of my family members died undiagnosed but showed classic symptoms in retrospect), all the time before hand wondering if we've got bowel cancer.

 What about the years of infertility and the cost involved in endless fertility treatments before being told, " it's unexplained infertility"? and the heartaches involved in that whole charade?

Don't get me wrong, i'm not wallowing in self pity, i'm just curious to know what your idea of 'suffering' is.

It is not so much for its beauty that the forest makes a claim upon men's hearts, as for that subtle something, that quality of air that emanation from old trees, that so wonderfully changes and renews a weary spirit. ~Robert Louis Stevenson

Hi there,

That's a good question.

 I don't describe myself as a sufferer, but I understand that others quite often see things that way.  I find that's the same though for lots of illnesses and diseases.

I prefer to describe myself as having Coeliac Disease and that I need to follow a gluten-free diet, because I want people to understand that my diet is necessary because I have a medical condition; and not because I am following the latest must-have faddy diet.

When I was first diagnosed I read in a magazine that Coeliac was a Greek word  meaning "suffering in the bowels" and as a highly symptomatic Coeliac I did "suffer in my bowels"  However since I have been on a strict gluten-free diet I have a new found energy that I didn't know I had.

Do you find it annoying when you see those having Coeliac Disease described as "sufferers"?

Janet Foster