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Gluten Free Guerrillas

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Celiac

Palm-65 profile image

I have just come back from a 4 day trip to Krakow Poland. I went with a group of friends. We ate in restaurant who said they offered gluten Free dishes. I made sure the waitress understand I wanted gluten free food and still I got glutened. I was ill most of the holiday . I don’t think I will be able to go on group holidays again ! Has anyone got any advice ? So fed up .

30 Replies

I feel your pain - it's the biggest problem with being coeliac from my point of view. I don't care about dietary restrictions, I would just like to holiday/eat out with my friends/family. I'm now resigned to only doing self-catering holidays - it's too much of a risk :(I also hate that our daughter has no experience of eating out, seems like such a shame as it's such a lovely thing to do.

So sorry you had a rubbish time - roll on some sort of vaccine is my only prayer...

Tillyxx

Palm-65 profile image
Palm-65 in reply to Tillyxx

Thanks x

I haven't eaten in a restaurant since before lockdown, and have no plans to. Holidays - I've given up on them. Every step of the adventure is fraught with risk, from no available food in airport, through to overseas restuarants that are every bit as poor as our UK ones. Others become tired of having to bend around coeliac requirements, so group holidays become challenging. I think you are as likely to be glutened in a restuarant in the UK as you are in a restuarant in Krakow. I found Spain great (the waiting staff have to have food allergen training as standard, from what I've been told), and Italy was great apart from one restuarant, like yours, that promised GF but made me ill (Italy has high levels of coeliac). Quick on-the-run snack foods are big issue no matter where you are in the world, and I've learned that hotel breakfasts are out no matter where you are - home or abroad. It's dire, I agree, and totally get your annoyance and reluctance to consider any more joint holidays. I don't know what the current answer is, but in the longterm the standards for gluten contamination need a radical overhaul and legal penalty system. Only then will things improve. We also need tour operators to take this seriously and provided tailored holiday options with travel guides to safe restuarants. There are bloggers out there who blog their holidays and overseas trips as coeliacs, and share their knowledge of safe options for food, but it is subjective and all comes down to whether, as you state, waiting staff understand and chef in the kitchen is up to speed. Europe should be safe as the rules are as the UK, but once you head East, coeliac is less prevalent/understood, and foods are different. South East Asian dishes tend to have a lot of soy sauce, etc. Its the poor knowledge - I've been to the Tate Modern in London, and queried their GF option - they pointed me to the premade salads on the counter - one was clearly marked 'GF' but contained pearl barley. I wanted to pick up the entire bowl and throw it at a wall. No one gives a damn about coeliac, and least of all our supposed representative charity. It's a joke.

Palm-65 profile image
Palm-65 in reply to Benjamin123

Thanks for your reply. It’s a real challenge . I was so ill this time. It’s really put me off!

Benjamin123 profile image
Benjamin123 in reply to Palm-65

I hope you have a speedy recovery. It's horrible being glutened when you've tried so hard to get and stay healthy. Feels like one step forward, ten back sometimes. Keep your chin up.

The Pearl barley on Tate Modern wall could be part of a new collection by coeliac sufferers , that picture entitled

You’re freaking clueless

Never thought of that. Put a frame around anything and people assume it's art. Might suggest that to them if I revisit.

Anything to raise awareness and how they continually get it wrong over and over again. They’ve no idea how they are physically crippling us.

Tracey Emin’s work has included My Bed. Satirist Craig Brown wrote about it in Private Eye his piece was called My Turd !!

anthonyb profile image
anthonyb in reply to Benjamin123

I am not sure if they are available but l managed to get a card written in different languages explaining simply my problem l always showed the chef wherever l dined, it was a tremendous help. Maybe try google,or celiac society for help.It gives you,more confidence abroad.

Don,t give up

Benjamin123 profile image
Benjamin123 in reply to anthonyb

I've put my own card together for previous trips - Italy and Spain, but yes they are a good idea, but unfortunately only work if staff know what gluten is, and what the requirements are. I had a work trip to Malaysa - Kuala Lumper. Sent an email to the hotel beforehand to ask did they cater for gluten-free diet. Their response was 'no'. It was already booked through work, so I had to 'go with the flow'. Was ill all week and even when I ate out and asked various places if they could do 'gluten free' and they said 'yes', they still hadn't a clue what that meant or entailed. Was never so glad to get back home in my life.

Hi. Seems anyone with food sensitivity in same boat when it comes to eating out. So feel free to feel comfort in that lol.

I’m wheat allergic not coeliac plus other food sensitivity. Recently had a uk break after not going out or eating out for two years. Always very weary of eating out anyway as end up ill at some point on holidays.

Takeaway gluten free fish and chips one day - fantastic, no issues. Found lovely place another day catering gluten free on the menu, that night vomiting and diarrhoea! 🤢

It’s hit and miss not self catering. But great that some places in the uk are trying to cater for gluten free.

My personal issue is that it’s not just wheat gluten the problem. Found a place doing gf breakfast - fantastic. But had a reaction to one bite of the sausage as allergic to some spices, sore mouth from that oh well minor I suppose.

Always found Spanish canaries to cater well for gf. A lot of food menus have the eu law of labelling all allergens - which was very handy to navigate dietary requirements especially if any language barrier.

X

Palm-65 profile image
Palm-65 in reply to Researchfan

Thanks for taking time to reply. It’s so frustrating . This holiday I was ill for most of the holiday. X

I agree Spain is good option. I did entire weekend in Barcelona and not ill once. For some reason the Canaries has popped up on other forums as excellent for GF. Not sure why, but they seem to do it well.

I tend to rent an Airbnb on holiday now, that way we can cook for ourselves if we struggle to find somewhere safe to eat. We buy a roll of tinfoil to cover baking trays, chop on dinner plates, wash everything before use. It's a useful fall back, if you can't find somewhere to eat.

Unfortunately it doesn't help with restaurants not being honest about gluten free, but there's no great solution for that. It takes a lot of research before you go.

It seems to me that here is a general misunderstanding about cross contamination. I was out for lunch with a friend before lockdown, we were at a very nice café on a local farm. Their home made soup was GF, so I ordered this and it arrived with croutons. The waitress said, 'oh, I'll just scoop them off' and was a bit miffed when I said I would need a new clean bowl of soup, and no croutons thank you.

Narwhal10 profile image
Narwhal10 in reply to BabsyWabsy

It’s ridiculous BabsyWabsy.

I have always been an ‘awkward hound’ with food. There’s family jokes. My parents and I went for afternoon tea at a posh 5 star restaurant years ago. I asked for the salad without olive oil (I can’t stand the stuff, but have found out since I’m intolerant). I sent it back, and a ‘new salad arrived. They’d taken off the top part, put new on top. I could still ‘smell’ it and they argued blind it was new saying the lettuce was just wet from being washed. 😡

BabsyWabsy profile image
BabsyWabsy in reply to Narwhal10

They must think we are daft. I think when you have an intolerance to something, you have a heightened sense of its presence somehow.

I've learned to walk out at that point, because the risk is too great if their knowledge is so poor. I had a breakfast in a well know cafe chain that was menued at 'GF' - it arrived, I queried the status of the sausages, was told 'I think they are GF'. Guy was pretty peeved that I asked him to double-check, and turns out they were normal sausages containing wheat. He redid breakfast and I still got massively glutened. I should have left at the point when he stated sausages were normal wheat ones. Complained to the cafe chain, no one got back. Complaint to CUK - was told that the most local authority would do was offer the cafe some optional gluten training online. No recompense for me, the person made ill. If they are miffed for you pointing out that they don't know their ass from their elbow, get up and walk, as they don't give a damn about making people ill.

Sausages are a tricky one, most people have no idea that many contain rusk made from wheat. Burgers too sometimes. All the major retailers seem to have cottoned on to this, and the premium sausage ranges in Asda, Tesco, Sainsbury's, Morrison's and M&S are all now made with rice a wheat and gluten free rusk. The middle and cheaper ranges do still contain standard wheat based rusk, so shop carefully. As for sausages in a catering establishment, steer clear.

Very true. I think I can now spot a rogue sausage just from looking at it and it tends to be if it looks like it's from a cheap range.

Hi Palm-65,

I’m so sorry you were ill and didn’t enjoy your holiday. Hope you recovery quickly. Yep it’s pretty restrictive. Self catering appears the only way forward. ☹️

Thanks for your reply. This was a girls trip to celebrate special birthday. I think I will pass on the next away trip as I became a real wet blanket. No point in going. X

My daughter lived in Poland for a while, as a teacher. She told me that I would find it very difficult to be able to find foods to eat with my dietary issues. (I have not only Coeliac disease, but other issues too). She also told me that they used quite a bit of MSG (which gives me migraines) in their cooking, and as you probably know, MSG can quite often be taken from a gluten source. It’s worth knowing these things before you go, so you can at least plan ahead. Obviously, it’s not much use to you now, but it may help others.

Palm-65 profile image
Palm-65 in reply to Ukulelelady1

Funny I did have a migraine when I was ill too. Thanks for your reply

Ukulelelady1 profile image
Ukulelelady1 in reply to Palm-65

Interesting. Although, I tend to get migraines when I’m glutened as well, so, there’s a chance it was that. It’s food for thought though - no pun intended.

I haven't chanced a holiday or trip away yet. Dreading it to be fair. Have you been anywhere that was safe, and was the Poland experience unusual or the norm?

Personally, I haven’t been abroad since being diagnosed. We tend to hire boats in the U.K. and do part self catering and have meals out at pubs that have a gluten free menu. It is do-able, you just need to have a plan.

Thank you for that. Staycationing seems to be the way ahead.

It's a shame, even in UK you can't be positive that there's no cross contamination. I find it embarrassing in restaurants but I have to keep reiterating gluten free. If I were younger I would open a gluten free restaurant.

Benjamin123 profile image
Benjamin123 in reply to Fatima66

A dedicated gluten free restaurant/café chain would be a flier. I was thinking yesterday that a gold standard award for restuarants is needed - i.e. one that clearly demonstrate gluten free, and are 100% safe, from waiters taking orders through to chefs in the kitchen. Not this crappy cross grains one that seems a bit of a hit and miss free for all - one where customer feedback of any bad gluten experience would automatically trigger investigation, and removal of status for repeat offenders.

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