Do you think that Coeliacs speak up enough?

[FionaGFG]

How many of you actively ask for Gluten Free beer/ food everytime you're out & about even if you doubt it's sold at a venue? Talking to a Chef this week he thinks there's no demand for Gluten Free food as people don't request it. Nor does he label up GF options as he doesn't want his venue to look like 'Holland & Barrett'. Are Coeliacs their own worst enemy? Not sticking together & asking for Gluten Free choices? Just playing safe & ordering salad not to make a fuss? Do you have regular yearly Coeliac check ups? If not why don't you ask your Doctor why you're not getting checked? Is there too much Coeliac moaning & groaning and not enough positive action in the Coeliac community?

[urbangirl]

Since diagnosis last year I don't eat out very much. However, on the occasions that I have, I have been impressed. Our local Indian restaurant has been excellent in providing me with gluten free meals. I have also been impressed with Pret a Manger as I enquired into what was in their soup and they looked this up in a file listing all the ingredients that were in the dishes. Recently I had the same experience in another restaurant where they looked up the starter and main course for me. But I am still a bit apprehensive about cross contamination.

I was meant to go to a family get together for a buffet in a small hotel. I expressed my dietary concerns to the host who replied being gluten free is so common chefs are used to it. Could I contact them so they can make something for me. I wasn't sure that I wanted to do this and found it easier not to go. Also in my experience buffets tend to be full of pasty based dishes and some cold meat and salad stuff. What often happens on these occasions is non-gluten free people eat all the gluten free food!

[myrab]

We have some birthday celebrations coming, so when booking at a local hotel who have others in the area, we went and chatted with the Restaurant Manager who in turn asked the chef and was reassured that he knew what I could and could not have (Brends Hotel Group Devon) very helpful. Luckily I have been in the catering trade for many years and used to cater for Special Diets ,and although more Coeliac's cases are being diagnosed nowadays not all caterers understand about cross contamination. Weatherspoons locally useless!!ended up being ill for days. Their Menus very unclear and leaflet to small a print to read without a magnifying glass and in subdued lighting.

But I always ask whether or not I intend eating at the place I am in and I always carry something from home to eat and if they do not provide any GF food I eat my own I mean how can they object!! not been thrown of anywhere yet ha ha.I am a newbie to GF as a patient and it is still a learning curve for me, so asking the question" Is it GF ?",is so important and just to make people aware .

Right off my soapbox . Myrab.

[sassyl in reply to myrab]

Myrab are you North Devon? We have some fantastic places around here. I've done lots of speaking up and always review new places on coeliacmap.com so if you are looking for somewhere N Devon to eat then have a look on the map. I got glutened at a Brends, but they were great post glutening and checked the whole food prep process. The manager made changes to their menus and food prep once I had spoken up to them, so it is always worth going back, good or bad.

[myrab in reply to sassyl]

Yes I am and in fact just had a meal at the Royal Hotel Bideford, The restaurant manager was so helpful checked the menu with the chef he explained what not to choose provided GF bread, had a fantastic worry free meal. really good service. Still not to happy with Salterns, Wetherspoons in Bideford but waiting to hear from head office as manager locally didn't really want to know. But there are a lot of helpful caterers getting more GF savvy,

Will check out your link sassyl thanks for tip.

[sassyl in reply to myrab]

I recommend Gerties on Mill St in Bide (sarnies, pasties, cream teas!!) - and the Pizza Express in Barnie is great too! Not been to the Royal for years. Have you tried Pier House in the Ho!? They have a nice GF menu too.

[myrab in reply to sassyl]

Yes tried waterfront and they looked after me very well, but the sister Pub Waterfront absolute disaster!!!!!!!!!!!!! Could only have Jacket potato so I order that and a side salad with a dressing when I asked if they would check whether I could have the dressing , the chef said no ! but that was only thing they could offer so not good. Trying Crealock Arms tomorrow see how they do.

[jmjhoh]

I usually dont bother asking - I know in a lot of places I could find something naturally gluten (and in my case dairy) free - like a jacket potato with no butter or filling or a plain salad but I am always concerned about cross contamination and whether or not staff are careful enough - so I just dont take the chance. I was never one for eating out before my CD diagnosis anyway so not that much has changed

[racquelle]

I rarely eat out. If I do, I make a point of going somewhere where I know I will be properly catered for. I find that I am really sensitive to cross-contamination, so I avoid taking risks. For this reason, I can't see myself asking for a GF meal in a cafe/restaurant who don't have clue what I'm talking about (plus I find it .

What I think we can all do is praise restaurants for providing good GF meals, so that they will continue to do it. Sending an email/letter afterwards and giving them a good review online (so that others with CD can see how fab they are) will encourage them to keep up the good work.

I think all coeliacs can expect to have regular medical check-ups: a blood test annually at your GP if everything is going smoothly, or to see a specialist if you're still having problems. I think we should definately be demanding this from our doctors.

[marydoll60]

I've been diagnosed for about a year now and at first was a bit embarrassed asking waiters/waitresses if they had gluten free options on the menu but then I thought nothing is going to change unless we make a stand and ask! Now I either phone the restaurant in advance or ask about gluten free options as soon as I am seated. I too worry about cross contamination but so far I've been fine. Chef's won't know there is a demand for gluten free options on their menus unless we tell them.

[virgolizzy]

I agree, the more we request, the more awareness there will be.

If it's anywhere for a special occasion, I will always speak to them beforehand & organise a GF & DF & SF meal & everyone has always been really helpful in my experience. I find eating out at lunch more difficult than the evening, but again I always enquire quietly & if there is nothing for me to eat & I am with friends, I will just stay & fish my emergency 9 Bar out of my handbag to eat & some almond milk for my cuppa!

I never get irritated with places, because it is just an awareness thing & I know that will get better with time.

Another thing we have to bear in mind, especially the smaller places, is that they can't accommodate everyones allergies all of the time.

[myrab in reply to virgolizzy]

I also have something that I can eat if unsure, but as a retired chef who ran ended up running a small Guest House /Tearooms it is in fact easier to cater for Special Diets, as it is easier to control the kitchen preparations of the food, I used to do a batch cake, bread and meals on a separate day before opening as everything was all washed down and not contaminated, always used a separate fryers pans and oven, so with a little thought it is possible, and I was not a Coeliac. When you have a larger kitchen more staff not trained maybe sort cuts taken that's when mistakes can be made.

[virgolizzy in reply to myrab]

That's true actually, if the place is smaller, it should be easier to manage, so will tweak with my thinking when i go out - thanks 'myrab'

[TheCoeliacPlate]

Interesting to know the thoughts of this chef. I personally always ask, but usually have done my research in advance to find somewhere open to the idea. I have been amazed recently at a couple of places actually having a gluten free menu, but no mention of it anywhere on their website - I'm sure they are missing out on customers because of this, as if I don't see any mention of it (and I'm in control of the venue), then I just move on until I found somewhere that does mention it.

[myrab in reply to TheCoeliacPlate]

I am an retired chef (see recent comments virgolizzy), To ask is the first step don't assume that all chefs cater for GF, they maybe know how to but easier to batch cook with the same ingredients, as I said to lizzy the more staff the harder the control unless there is proper training and awareness, I have already had issues with wetherspoons group, and have wrote to head office with how they can improve their menus, and suggested they use Coeliac Uk's Professional Advice and training programme for Caterers to help them get it right, they might ignore it but the internet is a power voice for disgruntled customers, and if it effects your health your going to let others know about it.

And if those in the trade can find another string to their bow by catering for special diets, can open up a whole new market.

[myrab in reply to TheCoeliacPlate]

I agree CarolineT,

I always make a point of asking for GF on any menu, even if I just pop in for a coffee as it builds up awareness of who doe's what when I do want to eat...Had a disaster yesterday asked waitress to check with chef what was GF options came back with Jacket Potatoes and salad, so ok that would do...Tuna and Mayo fine.. I received a tuna mayo Baguette mmm, try again got Jacket Potato and salad with a dressing, asked them to check dressing with chef, reply yep no that's not gluten free. Money back no lunch. But outcome manageress asked a lot of questions about GF and pointed her to Coeliac UK and she is getting in touch with them for advice today, and that was quite a large establishment with two restaurants in the same area. Oh and there was no GF signs on the menu just vegetarian ( V).

[weee]

I make a point of it, and stress that it MUST be gluten free. I've had a variety of reactions.

[FionaGFG Administrator]

Great comments! It really seems like this is a chicken and egg scenario. If we go somewhere that looks like there is no GF option labelled on the menu many don't ask. Yet many Chefs don't want to 'clutter' up their menu with V & GF symbols etc. So they may well do something or be able to adapt something but we'd never know. Lack of Coeliacs asking means they think there's lack of demand and so we never see GF items on menus (apart from the usual chains which is OK but becomes v boring after a while). Maybe we need to create a Coeliac eats out fortnight and make a stand and all demand GF at the same time each year?! We could also eat en masse in small groups of 4 or so so we encourage other newbie Coeliacs to eat out and ask.

[MrsPepperpot]

Many chains now issue feedback requests and a prize draw incentive to take part. Recently, I have tried to complete these, they are online and usually have a comment box to rant in. Got one from Starbuck's today.

I'm hoping that enough of these may make them think a bit more about the potential customers that they are excluding from the coffee shops etc.

[racquelle]

I don't get the same enjoyment from eating out that I did before diagnosis, because I'm always wondering if what I'm eating will make me ill. We don't have any gluten in our kitchen at home because contamination has been such an issue. If I eat out, I know it's a gamble (even in restaurants I trust).

[weee]

I noticed on a menu that various meals were suitable for vegetarians, vegans and piscatarians (?sp) .. I said to the waitress ' I see you cater for vegetarians and for those unsure of their level of vegetarianism, however do you provide anything suitable for coeliacs?' She got a bit flustered , I'm sure she spat in my salad.. :/

I also wrote a letter to Tesco recently saying that their finest range indicates what is suitable for vegetarians, I pointed out that this was mostly a lifestyle choice and that generally speaking vegetarians are not putting themselves at risk of 3 types of cancer, osteoporosis and anaemia should they accidentally ingest a piece of meat, where as if a coeliac eats gluten THEY ARE... Ughhhh

[asborne in reply to weee]

At tesco was told there wasnt a demand for coeliac food, it didnt sell well.

[philaustin]

I usually assume that if 'gluten free' or GF aren't mentioned on a menu it means that a venue doesn't do GF. However, it can be surprising to find that when you ask the owner or manager of a venue if they can do you a gluten free meal they often are willing to customise your meal to suit. They want your money.

A couple of weeks ago a group of us had Sunday lunch celebration in a nearby hotel. My daughter had booked it weeks previously and said she had spoken to the chef and arranged gluten free for me. I pre-booked a duck pate starter followed by the Sunday roast. The pate arrived without the toasted bread that everyone else had, and the roast arrived without the yorkshire pud that everyone else had, so it appeared that all the chef had done was remove anything containing gluten from my meal and put gluten free gravy on it. It occurred to me that my meal could be cross-contaminated but I didn't say anything because we were celebrating my wife's birthday and my daughter would have played hell if I had rasied a fuss. I'm guessing, but I bet I'm not the only coeliac out there who has been in this situation.

I wonder how many coeliacs go into venues for something to eat, find they can't have anything, and make up for it by drinking large amounts of cider, wine or spirits instead. Not healthy, I know, but I've been there.

[urbangirl in reply to philaustin]

Yes I have done similar. Had a boring salad or pushed food around the plate in restaurants. Surprising how few people notice what you do! The other day went to a party and ate some lovely gluten free food - but realized that the main course contained brown ale (I didn't know whether this was ok) and the cake probably contained non gluten free baking powder. I had eaten the food before I realized. I couldn't say anything - it was too late. I have learnt that however specific you are sometimes other people who are very well meaning don't understand.Bit ill in the evening but I have been a lot worse.

[Hidden]

I stayed in a small family run hotel last year that did bed and breakfast, when I booked I asked the owner if they catered for special diets and coeliac in particular, the reply was whats that so I said it's a gluten free diet. With this the lady said Oh yes I do gluten free and buy gluten free bread. So I asked if it was toasted/prepared separately from the other food, she went very defensive and said I don't have time and no one has asked me this before.

When we arrived the lady was curious about preparing gf food separately and I chatted to her about cross contamination and said that a few ordinary bread crumbs could make me ill. She was very interested in what I said and I knew that she had taken it on board for the future. So I took my own bread and just had a hard boiled egg for breakfast.

The reason I stayed there was it is in a small Devonshire town and my son had checked the internet and said he'd like to stay there the most because of the location and they had wi fi! they also only had double rooms left and said that I could have 2 for the price of 2 singles they also let us arrive early and leave late as we needed somewhere to change for a funeral

So I think that the real problem is that if a coeliac arrives at a busy time the staff are under pressure and the chef see's their serving tools etc as their tools of their trade and don't think to swap utensils as they do things automatically, so the secret is to approach them when they are not run off their feet and make the point simply but clearly.

And sadly if not enough coeliac speak up it actually makes things worse for future coeliac.

That's my 2p's worth,

Jerry

[Jessiepup]

We had a very positive experience on a Center Parcs short break last weekend.

I am not Coeliac but strict GF for health reasons.

We had lunch in Hucks which is an American burger restaurant - took one look at the menu and realised I would probably be leaving hungry.

The chef was happy to come and have a chat and informed me that the beef burgers were 100% GF and that they have a separate chip fryer and surfaces especially for food intolerances/coeliacs. He offered to adjust recipes on some sauces and salads especially for me!

I was very impressed and had a lovely meal without the worry.

My son (also GF) almost diet of embarrassment however because mum felt she had to talk to the chef!

Other restaurants we went to were equally helpful even though the menus didn't specify for allergies etc.

[pretender]

Its my belief that Coeliac's spend to much time on the "GF" term than going into eating establishments and asking for Gluten & Wheat Free foods. If a business wants your custom they will cater for you. "GF" to me means it may contain gluten so I never use the term or follow that part of the diet and do not have bread products. The more gluten you avoid the better for the patient, the gluten free diet is only there for those who can tolerate it which is why the gluten level was reduced in January 2012

[Hidden in reply to pretender]

Ironically the label 'wheat and gluten free' is one of my pet hates as it gets my hopes up and then I read that the main ingredient is oats or oat flour. This mostly applies to food in the free from aisles and is one of the reasons that I don't buy from them.

The other thing that coeliac and those who are intolerant to gluten should be aware of is that food prepared in restaurants with naturally gf ingredients is produced in an environment that handles wheat and gluten and outside of the restaurant would have to be labelled as 'may contain gluten'

So it would be interesting if some gluten and wheat free meals were gluten tested and whether they would be within codex or below 100ppm ( very low gluten) or worse still neither of the above.

As for whether it would be zero gluten is doubtful.

[pretender in reply to Hidden]

My pet hate of gluten/wheat free is the fact that the basic ingredient may have been from a gluten/wheat source and is legally accepted as stated wheat/gluten free. I do not buy from the Free From aisles because most free from foods contain 'Hydroxypropylmethylcellulose' The majority of restaurants use pre-prepared foods otherwise known as fast foods, you get what you pay for. I am not aware that labelling other than "gluten Free" or "very low gluten" has to be on the allergen labelling, 'may contain gluten' is not a legal requirement. There are many foods on menu's that are suitable and menu's can be adjusted by a decent chef to be safe.

Zero gluten can be achieved by a properly run kitchen and the best test is to make your own decisions on what you know is safe for you. Nothing can be guaranteed in any kitchen.

[Harryg]

I have found it so hard to eat out , there needs to be more GF food I went away a few weeks ago and got so fed up with salad !! also buying GF food in shops is so expensive , eg. warburton Wraps .... £3 .10p DISGUSTING !!!! so trying to bake my own , really needs a GF shop in each town .

[pretender]

The first thing is you are a coeliac not a gluten free person. Coeliac I find more understood than GF is. When diagnosed you are advised what to avoid, wheat, rye, barley and some find oats a problem. So you go to a café/restaurant and look at the menu.......it is clear what may contain the forbidden grains. So whats the difficulty? Hi I am a coeliac I need to avoid.......and any decent chef/establishment will give you a meal so you are eating with friends & family. I eat out when I can and where I can and I have very few issues and always get a meal and that includes holidays. My Coeliac Disease is treated by knowing what to avoid and my formaldehyde allergy the same way which includes most of GF foods. Harryg GF foods are sold in many outlets and an outlet dedicated to GF would not survive because of costs/overheads and demand.

[Thurgolady]

I think we need to let cafes and restaurants know that there is a demand - I ask and will often call in a fish and chip shop to ask if they do gluten free, even if Im not planning to eat there and then but just to flag up that there is a demand. I think we should all do this and ask our friends and family to do the same - after all it will also affect them if we all want to eat out together it usually falls to us to say where is suitable! I also think that we should be emailing companies (or through facebook if you use that) to make suggestions, ask questions about gluten free. Ive emailed Knorr recently as some of their gluten free stock pots contain barley malt extract and I wouldnt eat that, emailed a burger company to suggest they use gf worcester sauce in their burgers so they are all gluten free - if we all make it a policy to speak up I think we would see changes more quickly. Ive noticed that Wetherspoons seem to have gone backwards with GF - it used to be a good fall back as there are many around but since they changed their menu the choices are really limited! Nando's are good but I object that their chicken isnt free range and I dont think that's excusable in this day and age! Gill

[philaustin]

We took to cruising for holidays back in 2014 because I was fed up with all inclusive holidays where they promised gluten free meals would be available, but werent very good at providing it in reality. Some cruise companies are better than others at gluten free. Theres a Facebook group 'cruising for coeliacs' if anyone is interested. I obtain a sort of 'special needs' form from the cruise company after booking to officially inform them I'm coeliac. Its surprising how many people cruise and don't know they need to tell the cruise company beforehand; just expect gluten free food because they've heard about other coeliacs experiences. Telling the cruise company they are gluten free helps them to stock up on sufficient special gluten free products., including beer. They won't stock enough if we don't tell them!