Has anyone else decided not to eat out?

[GlutenFreeBee]

There are lots of questions and comments on this site about eating in restaurants, but I'd like to ask if anyone else has decided to stop eating out.

I'm a medically-diagnosed coeliac. For the first few years I was fine eating gluten-free food in restaurants and at other peoples' houses. As time has gone by my body has got more and more sensitive, and now it doesn't take much to give me a reaction, and my reactions are stronger and more unpleasant. The Doctor says its like my body has post-traumatic shock with gluten- after years of being so damaged, it now totally over-reacts to minute amounts. As time has gone by, I have ended up being ill after AT LEAST 50% of meals out, no matter how careful friends are in preparation, or the grilling I gave to restaurant staff. I suspect its to do with the pans and kitchen equipment.

One day I decided I couldn't bear to waste any more days ill in bed as a result of eating out (which is supposed to be a pleasure!), so for the last 6 months I haven't eaten out at all. I either go out and have a drink but don't eat, or invite people to my place and I cook (but hard work and expensive to do it all the time). I feel much much better physically, like new, but socially I still find it mortifying.

I bought my own lightweight camping pans and the last two holidays have been self-catering, all with my own kitchen equipment. Very hard work indeed, BUT I was healthy and energetic all through the holidays and I did stuff that I never would have believed a couple of years ago (extreme sports)- I was the most energetic person there, up at dawn every day.

The last glutening was at a friends house- everyone was eating sandwiches, and obviously I didn't have one but I did accept a glass of Coke. At the time I wondered how clean the glass was and whether my friend had touched the part I was going to drink from with her sandwichy fingers, but I drank it anyway. An hour later the tips of my fingers started tingling (the first tell-tale sign) and I ended up spending the rest of the weekend in bed and in the bathroom - that was the only thing I consumed outside of my home that day

Is anyone else in the same boat?

Does anyone have trouble even with drinks, due to grimy glasses etc?

How do you deal with it?

This is the hardest thing I've ever done, but I don't want to waste another moment feeling ill, I've got too many great things to do!!! It's like a paradox- if I eat and drink things to get closer to people I end up further away, as I get ill and miss out on the next few days. If I isolate myself socially by refusing things from people, at least I'm well, lively and I can go out and do the things I want to do.

[FionaGFG Administrator]

Have you been tested for other problems eg SIBBO, lactose intolerance, allergies, food intolerances?

[GlutenFreeBee]

Hi Fiona-

yes, I have a major klebsiella infection in my gut, which I'm treating with a herbal treatment and a low sugar diet. I also got tested for cross-reactive foods, and discovered that my body reacts to tapioca, so I have eliminated that. I don't consume any dairy as it aggravates my skin a lot, although it doens't actually make me feel bad.

[FionaGFG Administrator]

Hmm I suspect some of your problems are due to those not gluten. I had a period where I bloated like a whale and looked constantly pregnant after eating anything 6mths after diagnosis- even salads at home! I've since learnt I can't eat chilli/ sugars in the same way I used to. I also avoid too much raw salad/ chick peas/ veg that ferments as that seems to cause me problems digesting it.

If you forward plan eating out - speak to mgrs and explain cross contamination then there's no reason why you can't eat out. Some chains are surprisingly good as are local restaurants and standalone restaurants. It's worth asking to see an allergist / immunologist to ascertain if anything else is causing problems. That said - having a break and eating simple foods and not eating out may help reboot the body. Then you can gradually introduce foods at home and make a note of what causes a problem.

[Hidden]

Hi Gluten no more, I'm very sensitive to gluten and to me the thought of gluten free food cooked with and around gluten is a big turn off. I have been made ill eating out, eating so say gluten free foods and really a restaurant to a coeliac is like a wheatie eating in a toxic factory and H&S would not allow it.

The real problem is to a busy chef their kitchen tools are the tools of their trade and they do things automatically (we all do) so if they are serving food they will not think twice about contamination when busy and trying to do too many things at the same time.

In truthfulness I'm a bit of a loner so it's a good reason not to socialise so on one level being a coeliac suits me and my personality. And like you I value my health more than wanting to play Russian Roulette with it for the sake of a meal in a restaurant that I will eat with trepidation.

I also do not drink alcohol so socially I'm a missfit but again that doesn't bother me. And I hate having to explain myself anywhere as it makes me very self conscious so I don't bother but again I like being aloof and I have friends and I have many interests and thats what's important.

I also self cater when on holiday and again that doesn't bother me because I find it easy peasy cooking. I also love salads and fresh fruit.

I do go in modern squeaky clean cafe's and I will eat a gf cake if it's wrapped seperately and I buy Falafels from a shop cafe near me and it's a confidence thing because if they made me ill I wouldn't go back.

I would like to see places that cater for coeliac actually tested for whether they really are gf and the staff fully trained in serving and keeping gf food gf. Or better still dedicated gluten free cafe's restaurants then I'd be as happy as Larry eating there.

Many coeliac feel what you feel and make excuses rather than admitting the real reason which is the fear of being glutened by others, so don't give your self a hard time it's restrictive enough being a coeliac.

So I will tel you what I think the answer is. if we accept ourselves for what we are warts n' all then others will as well. So instead of dwelling on what you can not do, dwell on what you can do. As we all have strengths and weaknesses and limitations.

So well done for being open and honest about how you really feel.

[meanioni]

I have no choice as I have to travel with my job and stay away or eat on the hoof.

You just learn to carry food with you and to be tough on restaurants - I reckon I get glutened about 1 time in 10 now. But I choose carefully, ask questions around the usual areas (e.g. do they fry their chips in the same oil as other food?)

i have found a local pub who "get it" and now buy in stuff especially for us. Which takes a lot of the worry out of the situation.

[ailsamary]

i still eat out regulary, due to other issues i become fatigued/in pain and cannot manage to cook a proper meal, still looking for this allergy labelling though how long do the restuarants have to put it in, or is providing a seperate allergy list that you have to troll through counted as acceptable

[Jacks]

I've tried eating out but have been more than horrified each time. I'd go for a coffee and the gf cakes would be sitting in crumbs of their gluten neighbour. In a well known coffee chain their wrapped gf brownie has wheat starch. A Honeybuns biscuit made me ill (thought Honeybuns was all gf plus I'd picked it out of a gf basket) - it had the smallest writing in the World - "contains gluten". When I contacted the firm they were dismissive. When I'm standing in a self-service queue having to make a quick scan the last thing I want to do is get my reading glasses out and hold the queue up, so being able to identify a brand was crucial.

As far as real food - meals, I last ate out 6 months ago, a group of us went and I said I'd organise it (so I could be in charge of my eating!). I visited the place a week before so that I didn't make a fuss on the night, and spoke to the chef. It sounded okay, safe, especially as the chef had worked in a hospital (okay - not Michelin star then, but my priorities have changed!) - on the night the chef was ill, so immediately I felt stressed. I had to go and explain that needed doing - some chips in a separate pan of new fat (they used a frying pan) and a gammon steak. Not my menu choice but something that couldn't fail. I wasn't ill at all, but I'd have been happy not to feel as though I had to gamble again or to have to make such a fuss.

At the weekend I had to go to Ikea with OH. When we went in the cafe for a cuppa I noticed they had a big notice "NEW gluten free - chicken meat balls". OH mentioned how good that was - did I want some? As I was going to be out for a few hours I'd taken along a fruit salad and bag of nuts. I was tempted with the hot food as it was cold outside, but decided to eat my stash instead. When we arrived at the food sale area I looked to see the chicken meat balls and was horrified to see a disclaimer notice "Note: Chicken meat balls are NOT gluten free".

No wonder I'm paranoid.

[sqwoooze]

Hi there - just a small point i have. I read on here somewhere that coke can contain gluten and barley and sure enough I checked asda's own and it lists both!!!!

[angel1980]

Hi Sqwoooze, I too have read same & am remembering now that Regular coke is ok but, yes it is the own store brands that are the baddies!

[GlutenFreeBee]

Hi all,

Thanks for your replies, some interesting points and info, and it looks like there are some others who are having similar experiences to me.

I'l be interested to see how the issue of some sort of certification programme for restaurants works out over time- if there was any kind of "guarantee" that'd be the best. In Spain there are some restaurants which offer guarantees for the G-f status of their meals, certified by the regional coeliacs organisation after comprehensive training. Maybe here one day....