Does being a coeliac make you feel why me and it's not fair?

This is something that interests me as the food side of the diet is catered for yet the psychological impact is left to the individual. And how many others are afraid of being made ill by resteraunts so they avoid eating out and have since diagnosis? Just look at the survey on here and extrapilate that to the 125K diagnosed coeliac in the UK.

I have a friend who is physically disabled and his disability started in his mid 40's when his right foot started to tingle and get pins in needles and then one morning he woke up in agony and his foot was really swollen. He went from being physically active and going hiking to having to walk with sticks and he was telling me how angry he felt at first and how he still feels why me? its just not fair and I told him that I felt the same with my diet and he was domfounded and said he'd always seen me as someone who is lucky and has an enviable life style.

I believe that the vast majority of coeliac feel this regardless of their life styles or how well we deal with our diets. And I think that this is important for other coeliac to know that we share these types of emotions. Because our self esteem affects how we as coeliac interact with others in so many ways.

I think other than a cure the one thing that would greatly improve how I feel about myself as a coeliac would be dedicated wheatfree/gluten free shops and bakeries + cafe's all over the place.

Jerry

[philaustin]

Jerry, I have ups and downs. Some days I think "well I've got coeliac but so what, at least I feel fit and healthy". Then it all goes t**s up when somebody comes around at work and says " bought some cakes and doughnuts in for my birthday, help yourself everybody". At that moment I feel sub-human, an outsider, an alien, and life is unfair.

And days out and holidays are not the same any more. Always thinking about food and where my next meal is going to be, and if I can get something gluten free. Then something simple happens like I find gluten free chips on Yarmouth market and have a pint of real draught cider in a pub. Then suddenly the clouds have gone and the sun is shining and everything is good again.

And I think of my poor health as a kid. Sickness, bad tummies, anaemia, slow development, and how my life would have been different if I hadn't been so ill. And I got my IQ checked by Mensa at Cranfield and I know I'm not quite a genius but could have gone way further than I did in education and career. I'm now doing the most complex engineering work ever in my life, at 61 years old.

Then I think of the days when I would have to 'visit the bathroom' five times before I left the house and I am so bloody grateful I don't have to do that now.

And I look at my wife and grown up daughters and lovely baby grandson and think how lucky I am, when other people find they can't have kids.

Somehow I don't think we will ever see dedicated gluten free cafes and bakeries everywhere because there aren't enough of us to make it financially viable.

But yesterday me and my wife of 38 years celebrated our anniversary in a nearby Italian restaurant where I had a whole pageful of gluten free italian food including pizza, pasta and puddings to choose from.

I asked Pepe, the manager, afterwards why the interest in providing a complete gluten free menu. His reply: " A lot of people are asking for it. I like to progress and keep up with the times"

There is hope!

[Hidden]

Hi Jerry

A very intereseting question. Like most I suppose I have those days, however in my case at the age of 18 months I contracted polio which was a bit hard.

My Dad aways brought me up to never complain and just get on with it.

I did this for 56 years with only a few ups and downs. Then I was diagnosed with coeliac disease and this event completely turned my life upside down.

Coeliac disease changed my life to an extent I could not imagine.

Do i feel why me? You betcha big time. As Phil said not being able to have the cakes etc at parties, pies at the footy, fish and chips at the local. Sad.

But life goes on and we learn to live with it don't we, but it is good to have a whinge sometimes.

Cheers to all

Roscoe

[MTCee in reply to Hidden]

This is an important topic that doesn't get discussed nearly enough. As I'm only a few years into following a gf diet, I'm still learning what I can and can't eat.....and it's tough. Yes it makes me feel far far better than I did before I realised what the problem was but it's also very restrictive. I have a whole load of health improvements and a whole load of worries to go with them. Eating out and holidays are the worst. I especially hate that feeling of looking down the menu and realising that I have just one choice and that its probably just the starter. It makes me angry that restaurants don't consider us and yet there's often lots of vegetarian or even vegan options available. I suppose it going to take time to percolate into the public conciousness, just as vegetarianism did. While I'm having a whinge, I may as well add that it doesn't help that the media make it out to be some kind of diet fad and that we are all a load of picky eaters who just need to loosen up and stop making life difficult for ourselves. 😤

[Suit]

Thank you for the thread. It's heartbreaking to read. I too feel a tremendous sadness and anger sometimes over everything I need to keep away from, how all those hidden wheat products might lure everywhere.

Invitations to weddings and so, where they state that there won't be any gluten free food and you realize how unfair it is that you cannot eat that delicious cake.

I don't want others to mind my diet, coz it's difficult even for one self.

But I need to deal with the phobia that has grown within me.

I'm fortunate enough to live in a country where there's pretty easy to find gluten free food nearly every where. But there's this discrepancy between what must be labeled as gluten free, and what actually seems to be gluten free. Like glucose syrup, which might or might not come from wheat.. no need to tell. But if it is from wheat I'm down.

But it's fine when option is to eat normal and feel really bad, or adapt and feel great.