Surviving gluten free

Hi again,

I'm needing some reassurance please.

I've been gluten free for 2.5 years and am healthy and eating a great diet despite the no gluten and also no egg and dairy. And that is wonderful and I am truly grateful to be well. However the eating out is still really hard. I enjoy the company instead, take my own food where necessary and go hungry rather than get ill. For work and travel it is a bit of a nightmare and really stressful to find any food as I can only carry so much. What gets me down is family and friends who exclude me because of my diet or really don't care if there is nothing at all I can eat and can't be bothered to find anything, even a baked potato or a plain salad. It is the emotional wear and tear of having to be on my guard over food and the degree of isolation that being gf brings. I love food and appreciate delicious fresh food. I guess in the UK there is a culture of ignorance about food ( hence the obesity problem). But it is really isolating to have to be fussy and I feel embarrassed about it even though it is a medical necessity. I know it could be far worse and I am really lucky in so many ways but I find it hard.

What suggestions do you have for coping with it all?

16 Replies

  • Hi again glutenfreemumuk, whether you realise it or not you are saying what many members feel or have felt and there are no easy answers as 'we' have special dietary needs full stop.

    Eating out is a hard one and eating restaurant food is having food prepared and cooked with forbidden foods, so there will always be a risk.

    I eat the odd chocolate brownie from Costa's when out and about and I go to a cafe that always has home made gf cakes which they buy in separately and keep separately with it's own cake slice. But when it comes to social eating I invite people around to my house and everything stays gf. That's what I do at Christmas and this year invited a vegetarian and I made them a gf nut roast and we all had some.

    I cope by looking at what I can eat and being comfortable with what I'm eating when out and about and I appreciate feeling so much better since going gf. I also have microscopic colitis so have to avoid ALL alcohol so I am painfully aware of how socialising revolves around eating and drinking and again I cope by looking at what I can do.

    Lastly you have to realise that you share these feelings of isolation at times with the vast majority of members so you are not alone so well done for making this post.

  • Hi gluten free mum

    I think use ur family is out of order to forget to accommodate your diet. Have you tried educating them? I would start there and tell them how you feel. I know the isolating very well and do what Jerry does and invite people to my house. I have also made food and taken it to a friends. I have a few trusted places where I eat and tend to stick to them. My friends are happy to eat there. I also have rheumatoid and can't always keep up with friends and family or join in with certain activities, it can make me feel outcast and different but I have learned to get out and grab opportunities.

    We know how you feel and are here for you

    Take care


  • Hi Kiki, thank so much for your reply. I didn't make it clear, my immediate family, husband and kids, are great and keep one section of our kitchen gf. My extended family are not really so good nor interested. I've had years of getting ill when visiting them. These days I take my own food or just have tea or coffee with them.

    Yes you're right inviting friends is a good solution and I did this at Christmas and the food was great and 2 other friends with dietary issues were able to eat safely along with everyone.

    The bigger problem is when I'm away from home. Thanks so much for your support.

  • I know how hard it can be away from home. I pack food for me and my son for day trips but when we go away it's so hard. We try to get a cottage so I can cook. We have a trip coming up to visit family but t can't afford a cottage so going to have to book a premier inn. Will take cereal for breakfast bowls and spoons and give me family very detailed info about what to cook for us. They usually get it spot on. I'm often very disappointed by cafes and restaurants, they can't make a gluten free meal as well as me! Eating is such a social thing, I do mourn the loss of eating out on a whim!

  • Hi gluten free mum

    I echo Jerrys and Kiki's comments. We do know how you feel and it can be difficult to deal with at times, but educating your family would be a good place to start, if you can. My children are grown up, so no longer at home, but my husband decided to go gluten free with me to avoid problems with cross contamination. I can still make all his, and mine, favourite foods using gf ingredients.

    I don't expect friends to always remember my dietary needs and often eat before attending any gatherings. It does make me feel sad at times, but I try to count my blessings (an old fashioned idea, perhaps!). I also plan ahead as much as possible. If visiting a new location I will google to find restaurants serving gluten free foods. I always carry a small bag of nuts and dried fruit in my handbag, in case I am really stuck for food.

  • I know how you feel - our most fun thing as a family was to go out and eat - not anything expensive, maybe get fish and chips or whatever. For my first year I survived on jacket potato, now I'm not eating dairy either it's not very good as no butter or cheese. I used to love potatoes and now I'd like to never ever see another one...many cafes have stopped selling them anyway...if there is anything gluten free on a menu it's always the most expensive thing on there. Cheap places just don't do anything gluten free apart from perhaps ham and eggs. It's a real eye opener to look at menus and supermarket food and realise that as a country we are eating gluten with practically everything. I don't drink alcohol either and that makes me unpopular.

    Anyhow that isn't very helpful, sorry. I take snacks with me when I go out or check places out beforehand. Pizza Express does gluten free pizzas and uses gluten free flour in its kitchens to avoid cross contamination. There's usually one in most larger places if you like pizza and are looking for safe bet. Waitrose seems quite good, if you read the labels carefully, you can get take-away salads GF for a picnic and sometimes they have a GF egg and salad roll in the fridge.

  • I am going to have rocks thrown at me. I know the frustration of being GF. You take it or you leave it. its finne if you live in the city and can access eateries that serve GF, or ccan you? I tried a certain restaurant chain that had GF on the menu...what a disappointment. We walked out and came home. As for invitations to friends that is another problem, they just do not understand what it is to be GF. I have tried without sounding evangelical. I invite friends home for a meal, they love what is served. I was asked the recipes for my Christmas fare. I have sister who is also GF, but have sister inlaw, who does nothing but complain about having to cater for GF and what a nuisance it is. it is easier to say i will meet for a coffee and chat, travelling is not so hard and the airlines do understand, I have had some lovely GF meals on long haul flights, we do travel businesss class. It is easier in larger hotels to eat out, but the pub grub chains I give a miss to.

    I spoke to nuitritionist in the NHS even she made several mistakes.

    More education is needed and people have to realise this not a FAD, this is our lives.

    I am good at refusing offers of non GF food. if I am offered it by someone who knows I am GF, I now say to them, you should know better and I don't care any longer if they are offended. To me this is ignorance.

    Maybe I am a tougher older bird, I don't care. I wont let it isolate me. I am not afraid to get up and walk out if an eatery does not cater for GF, I have been know to ask for the chef to check that chef understands. If the chef doesn't understand, I thank him/her for talking to me and then leave.

    Just an aside if the NHS can't get it right, we have to do it for ourselves.

  • I have only since Dec 1st decided for healrh reasons to go G/F as I have FIBRO & damage menisci, patellar, basically osteo arthritis in all my joints, so after doing own research and finding out from Nutritionists what to eat and why, I now am very aware of eating out, some of my friends have problems others think it is all "just a fad" that I am going through and yes there are those who are ill with it but as I am not a sufferer they think different.

    Anyway I do love salads, I love meat, but the meat has to be from Brasil, Argentina, Venezuelan, at times maybe Ireland if I know it is all grass fed, same as butter grass fed, the other is fish I love fish, so maybe when you go out look at having these types of food from the menu.

    As the law changed in Dec 2014 all restaurants who cater for G/F have to have separate cooking areas and machines filters ovens chefs, etc it is a

    nightmare, as where I work we can no longer "provide" anything G/F on our menu as only have one kitchen.

    I have found so many recipes that may help you educate family, but they also have to want to be interested in your well-being. Some of my family members think that changing so much is not healthy, but in over a year this now is the best I have been. I am now trying to re-educate my mum, for her own health issues, so that she will come off whole-wheat products soy rye oats etc. I think maybe if you enjoy baking make own cakes biscuits etc with coconut flour and do not tell family is G/F I am convinced they not notice difference. Stay well and stay positive, and any support hopefully we can all help each other.

    Sorry for long reply.

    Wishing you well.

  • Thank you so much everyone for your comments and advice. I really appreciate the support.

  • You're right, it's difficult but then again I don't trust anyone who isn't coeliac or an incredible chef. So I take my own stuff with me. I'm also lactose free & often that's harder to find. At a good restaurant I'll eat steak or seafood, plain jacket potato. OH's very accommodating so we tend to eat here - it's gf & I don't have to drive!

  • i think the grieving process of having to give up certain foods is a long one & it's a huge adjustment when eating out. However, I find it is getting easier as places are more aware. I can't eat gluten, dairy, nightshades, any grains or pseudo grains, soy or nuts so it can be a pain, but I have to say, whilst I always avoid chains, restaurants are always happy to tweak with what they offer & tend to always have fish, steak, ham, chicken & veg on offer, so I have safe choices. I stick to a couple of local restaurants & cafes as I know I can eat there with confidence & if out & about, I always make sure I have a good cooked breakfast, so if I have to skip a meal due to lack of good food, my body can cope well with it. whenever going out to a new place where friends choose the restaurant, I ring ahead to ask for a specific meal to be prepared & I have to say, not one place have refused. This xmas I did the same as others, invited people over to mine & when we did have a big family gathering at my Mums, I prepared all the food, so I knew I could eat lots.

    ironically, I have found the worst place for food is in the hospital. Last winter I had to go in for a few days & all they could offer me, when I eventually was able to eat, was jelly in a pot! i was flabergasted at their lack of options & knowledge. I know that if I am unlucky enough to go in again, my hubby will have to being in all my food!

    Being unable to eat so many foods is a huge loss but I am soooo grateful for feeling soooo much better & most days I can now cope with that loss.

  • Hi,

    I have great sympathy with you, although my family have been support it at work that I often feel isolated, cakes at section meeting, holiday treats that members of my out lab bring back. I am waiting for a good moment (e.g. not just after someone has brought in food I can't eat, so that I am not to point fingers) to post this link on my Facebook page. Whilst the subject of this story is the problems facing children I think it is excellent at explaining why unintended "food bullying" is so difficult for people like us with food allergies to deal with.

    For eating out if you join the coeliac society they have lists of accredited places to eat (Franky and Bennies have just passed), also although I'm not sure how it would fit with the egg free I find many Thai restaurants are good as they use fish sauce not soya sauce and coconut milk instead of many other dairy products (I also have an issues with masses of dairy). I have emailed first but the two I have visited here in Lancaster where both brilliant.


  • My apologies; too long since I've visited.

    I blame the anger and frustration of adjusting to the completely new way of life now forced upon me. I used to be a chef of sorts; what kind of chef do you know who cant taste their own creations? That went out the window. It hurt.

    I am vegetarian; that limits my food options even more. I cant tolerate much soya, lactose (dairy) or flour of any description (I haven't worked out which are wiping me out yet) and spices give me some kind of colitic nightmare reaction so my personal choices are desperately limited.

    Even with my cooking background, I find it hard to be bothered to come up with much flavour or variety. As for eating out; I know of only one reasonably local restaurant (I live in backward Devon) which surprisingly only uses GF ingredients for its entire menu...but at about £40 a head for a light simple meal....out of my budget completely. And most of the menu is meat orientated anyway. I haven't eaten out for several years now; I got totally sick of undressed baked potatoes and the last straw was a Beefeater (I was with my daughter and her friend) who could offer me NOTHING bar a cup of black coffee although (give her her dues) the waitress was incredibly helpful and terribly apologetic.

    I no longer accept invitations to eat out with other people. The entire process was too embarrassing and I still ended up sick for a week. I dont even get invited any more and initially I was gutted. (I chose not to drink alcohol either so I'm a total social pariah.)

    But I'm no quitter. I figure I feel so much better with this restrictive diet- how can I honestly complain??!

    Instead, I make vast quantities of homemade gf chocolates, and have perfected the art of the gf cake (eventually!!). I can knock out a wedding cake which is indistinguishable from a wheaten offering in taste or aesthetics and for me- this is kudos enough. Now when I do get invited to visit, I take cake or a wodge of chocolates with me and I seem to be an instant celeb rather than the awkward dietary problem. I am gradually replacing my deep humiliation with some kind of personal respect and its a step in the right direction.

    My point is; embrace your difference. Dont be embarrassed by it- make it work for you. There are a lot worse things.

  • I don't trust many people to cook for me and prefer to cook for them in my house. Some people just don't understand or can't be bothered. However, some of my friends are absolutely brill and go to a lot of effort. If I go out to an event with food such as a party, there is often something I can eat but I try to get to the nosh very quickly before people start contaminating it. Looks like I am such a greedy girl! Also usually have something in my handbag in case there is nothing much available, or down a load of wine which I can tolerate!

    BTW the other day I was tempted by some GF brownies in a deli so asked for one. The assistant went to use the tongs used for non-GF cakes to give to me!! I suggested she didn't do that for GF products. She used plastic gloves instead. Clearly not trained properly. I didn't want to eat the brownie after purchase because I wondered what else might have happened to the brownie. Besides it was probably made with GF flour which I can't eat anyway.

    I never cease to be amazed at what people say. One friend who should know better, likened her dislike of a certain food to me not being able to eat gluten. As people on this site have said before, there is a view that not eating gluten is a lifestyle choice. I do miss some stuff and sometimes I have the most overwhelming cravings. In fact today I thought about having something dodgy. Fortunately I was unable to purchase anything. Its been three years since I stopped eating gluten and I feel so much better. On the occasions when I have been glutened that reminds me why I don't eat it!

  • If you eat out, ask for a salad with NO CRUTONS AND/OR DRESSING MADE WITH MILK PRODUCTS. I get salads at certain places here in the United States and they are very reasonable. Where do you go out with your friends now and then that these places don't do what you ask? You can tell them that it's a health issue and would like to see a GF menu (if they have one). Have you also talked to a Manager of the places you go out to? That may help, as well.

  • I know exactly where your coming from. My husband is very sensitive to gluten. He gets so Ill he can't even bring himself to eat gluten to get the official test to confirm. But that's a whole different story...

    He stopped gluten a year ago & in the last year we havnt been invited to a single meal round friends. Family is thankfully much better, but then I nag & triple check everything which I bet annoys them! we visit family & have to stay with them due to distance & they have been pretty good at asking advice & shopping gluten free, but it took for me to be quite clear about how severe the issue was. Xmas 2014 we were at my parents & Matt had a beer or 3 & was the worst he has ever been. My parents saw the carnage, he spent all day in bed with a fever, & crippling stomach & rushing to the toilet every 10 mins with violent sickness. It was like the worst ever hangover! On the plus side my parents have no desire to see Matt go through that again & so have been very good.

    I do have to interfere a lot tho. My hubby hates it & gets so embarrassed! He would rather sit & watch everyone else eat than make everyone eat gluten free! I can't watch him suffer tho! He has a go at me for making such a big deal, as he hates being an inconvenience. it's really made him quite depressed. It's a huge shock, we were foodies before he started getting sick & ate out every week. Now it's always a real gamble. I always secretly ring ahead & check places for gluten free options as I can't bear to watch him eat another steak & salad & jacket potato! I'm so thankful that places are finally starting to realise coeliac is a major problem. I thank god this problem has come about now, rather than 10 years ago. Our local tesco has a large section of GF food, whilst it is expensive, at least it's there! It wasn't even an option a few years back!

    We have just been invited over to a friends next Saturday for a meal! Like I say, it's the 1st time since matts been GF. I have had to quiz her about what she's cooking (after offering to bring a gf chilli), she assumed her recipe would be GF, but on further questioning it has stock pots & chorizo which I have asked her to check, and lots of spices (which shoukd be fine providing they are Raw spices & not mixes!). I feel awful interrogating everyone, but they don't understand how hard it is. We only recently discovered Worcester sauce & soy sauce & mint sauce were no good! I even got some jelly sweets I assumed would be fine but turns out the fructose syrup has gluten! There are some very strange products you least expect!

    We talked this year about going on a family holiday. But my husband wasn't keen. On further questioning he said there's no point, one of the things we love most about holidays is sampling all the food, the fantastic all inclusives & cute little family restaurants. I hadn't even thought about that! I'm going to make it my mission to find a family friendly, gluten free holiday in the sun! Am desperate to cheer him up a bit. I think he really just needs to accept this is life now, we will survive & at least he feels well again for the 1st time in a long time.

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