What's your biggest health concern as... - Gluten Free Guerr...
What's your biggest health concern as a Coeliac? Or parent of a Coeliac?
FionaGFGAdministrator85 Voters
It's too late to worry about what secondary medical problems I might develop. I already have most of them. My children are adults with children of their own. They make their own chocies. My biggest concern is social interaction and food: finding restaurants that really understand about cross contanination and gluten, allowing others to prepare food on my behalf, going to a social function and not knowing if I can join in the fun ....
This is a good comment, I too have secondary medical problems as well as unrelated genetic conditions which I think would be worse for my children to inherit. I find that empathy towards people with special dietary needs has all but disappeared now even with close friends and family.
I already have osteoporosis, and because of my young age I think it's definitely related to the Coeliac disease.
The issue I worry about the most is cross contamination....it's my main bug bear!! The thing is it's relatively easy to eat gf foods these days, even eating out you can order a gf dish. But the one thing you cannot see is cross contamination on the plate, so sometimes there's no way of knowing when eating out if you've been glutened, unless you get the obvious symptoms (which could also be mistaken for food poisoning!)Yet the internal damage is done, symptoms or not. If it wasn't for this I think I could manage being Coeliac a lot better and not get so stressed over it. At the moment whenever I get a mouth ulcer, a bout of tiredness, bloated stomach etc I immediately jump to the conclusion that I've been glutened....but this may not always be the case....or maybe it is?!!
My first biggest concern is that anything that happens to my health now will just be dismissed as some side effect of CD by the medical prof
ession and will go untreated because of that.
My second biggest concern is the lack of follow up monitoring and testing having been diagnosed.
Third biggest, the same as Celia. How do I know if I've been glutened and damaged or just have a ' normal' tummy upset., and who cares anyway?
I think we've all been betrayed by the so called 'health' system.
I agree with Phil about the lack of follow up. Although I was given another endoscopy a year after diagnosis to see where thing were up to, I've been left to fend for myself since then. So I've had 8 years to deal with CD on my own - some of you may have had much longer.
I realise from some of the discussions on this site that not enough information is given to re related conditions, which is actually a bit scary.
I was fortunate in that when I was diagnosed with the condition I had two further endoscopes to check on the healing of the small intestine. Following this I had blood tests and a consutlation appointment each year, When I moved from the area I lived in I found my new area did not do this. However my GP has now started a routine annual check for all celiacs via a practice nurse which includes routine blood tests.
i found it hard to answer the poll as i have many main concerns esp as my immediate family members have died from cancer & half of the rest are a living testament to the wide variety of auto immune diseases out there....i dont like to dwell n it too much guys as it has a danger of getting depressing & i will do my best to not allow that to creep back in....i also have colitis & various allergies & intolerances with my particular favourite being anaphylaxis to wasp stings....there are ways of managing them all so they do not overwhelm my life & i hope all you who are feeling its all a bit too hard find your own ways to adapt & disallow this disease to get too big for its boots....i have had it since birth & got diagnosed 10 years ago @ the age of 30 so i do have plenty of experience of the challenges it puts on our shoulders....one of the easiest & simplest things i do is take a prescribed anti histamine every day to dampen down any reactions i may get from things other than gluten & it really helps take a lot of stress away too.....good luck all & try & keep positive & in control of your bodies & health ....research research research research x
I'm very fortunate in that my sensitivity level's are quite low, I don't eat anything containing gluten but I do not have to worry about make-up/shampoos etc and at the moment I have no secondery medical conditions, my biggest concern is if I will struggle to concieve or carry a pregnancy to term and also, if my children may end up having CD and how bad they may have it!
My biggest health concern at the moment is tiredness and getting back to full health. I feel lucky (in one respect) that I don't have a job at the moment so I have been able to take it easy, but just eating a little bit of gluten by mistake or if I eat something that doesn't have gluten in it but doesn't say 'gluten free', I can feel tired for days afterwards. Will I ever reach a point of being able to live a 'normal' life?
What have other people found with regards to their levels of energy and tiredness - have they improved over time and if so how much? I appreciate that it is different for everyone but would love to know how peoples lives have improved over time.
