At the risk of alienating half my audience and many close friends… this is a rant that has been boiling for a while.
I’d like to say firstly that I love you all very much… I’m just venting some frustration. All of my vegan and coeliac friends are amazingly accommodating of me and my allergies, probably because they understand what it’s like having limited choice and also because all my friends are just all round lovely empathetic people.
But when I hear Coeliacs complaining that they can only get gluten free chocolate brownies in coffee shops… it makes me a little bit jealous. The old ‘fruit is not a pudding’ line, expecting something better, has me feeling green with envy. Because I think the only pudding I really trust when I eat out is plain fruit salad. But you know those awful tinned fruit puddings you get sometimes… guys you can do better! #fruitisnotapudding
When I hear vegans protesting that there isn’t much choice on menus… I roll my eyes. I’m saying this tongue in cheek because I know how hard it can be to get taken seriously. However things have got so much better in the last few years. Most menus now do have at least one vegan option, which is great.
But since having my last two life threatening allergic reactions, I find I now have very low expectations.
My only hope when I eat out is that I will not die.
That fear is very real and I’ve learnt to keep it under control over the years. But it’s there to keep my safe, because I have faced death more times than I’d like to mention. Having an anaphylactic reaction feels like you are dying. The feeling of impending doom is a strong symptom for me, because the body is fighting. Fighting against itself and it does not want to die either, but the reactions are all messed up.
So just don’t kill me. Seriously, my expectations are that low.
If you give me a packet of crisps and an apple and tell me you don’t think your kitchen is safe, that’s fine with me. I mean it’s disappointing, but I’ve grown up with disappointment. I’m used to having a plain meal, no pudding, only one thing that’s safe on the menu.
If I get the blandest meal imaginable and leave alive and without an allergic reaction – that’s a successful meal out. For me, eating out is more about the company, the living, the laughs and the experience. The food aspect gives me so much anxiety.
If you can only offer me one option, and that’s plain, no sauce, no potato, missing items from what should be included as they’re not safe… yup… I’ll pay the full price, (which is often what happens anyway), to guarantee a safe meal.
If a cafe is OK with me bringing in my own cake, that’s a win.
If I’m allowed to bring in my own gravy, I’m happy.
If you have nothing safe but will let me join friends and bring in my own food, thank you.
Because all I need from you is honestly. Don’t guess. Don’t assume. Check and tell me if you think anything is not safe. It could be my life, of someone else’s life on the line if you’re wrong.
It could be a coeliac in pain, recovering from being glutened for weeks. And who knows what the long term effect is for a Coeliac of many exposures like this? Restaurants may not see this as so serious but it affects the intestines so badly that vitamins cannot be absorbed. If undiagnosed Coeliac disease can kill and many do not have the symptoms we all assume are present so damage is being done and they don’t feel ill.
Look what happens with just a little thought and kindness
If staff will enter into any conversation with me to discuss what’s safe, what’s not, what I like, what can be adapted… I’m already buzzing and chuffed that someone cares.
Because quite often, they don’t. I am getting turned away more often lately. Just today I phoned Nando’s in London to check about booking and discuss my allergies. It was an automated message declaring that they can’t cater for allergen requests for click and collect. We may not go there now, despite them being so great for me in the past.
And I hear so many times, ‘We cannot guarantee, our kitchen contains x,y,z allergy… eat here at your own risk…’
When I get a starter, main and pudding that is not just a plain salad, steak and fruit salad… you’ll get Trip Advisor reviews, Facebook checkins and Instagram posts from me over the moon. This applies to other people living with allergies too. If your kitchen has gone the extra mile, I’ll be so thrilled.
You might even get a good review anyway for mediocre service, especially if I have a nice safe meal. Because every meal out is an achievement in staying alive. In living life as normally as I can.
But if you go above and beyond.
If you create a tasty, well seasoned and nutritionally balanced dish… I’ll be sending my compliments to the kitchen and tipping your staff.
You’ll also get a raving fan, a return visitor and a customer for as long as you continue to value me as a human and cater for my allergies. And I come with lots of friends, so that’s more money for you!
I live daily with a very real, very raw and still very insistent fear of dying. A lack of trust. A gnawing fear.
That maybe, today, this risk, this meal out, this time will be my last.
And I have SO MUCH LEFT TO DO ON THIS EARTH!
I am so alive it hurts.
So next time you complain that your choices are limited.
Remember this.
Vegans – I completely respect and try to emanate your life choices, but they are just that. Choices. If you are served a meal cross contaminated or containing animal products, maybe you won’t even know. You won’t get ill and you don’t live daily in fear for your life.
Coeliacs – I get it. This is not a choice. The only solutions for CD is to avoid gluten forever. But there is so much choice now with gluten free menus, GF products in supermarkets. Please be grateful. Be vigilant and I know many of you do get glutened regularly because cross contamination is a real problem… But with careful planning and avoiding gluten, your life is not at such imminent risk. You won’t die from being glutened. However having spoken to many of you after the first draft of this blog post I realise that there is real fear amongst the Coeliac community too and also many other potential problems, from infertility to diabetes and cancer. No one wants to be made ill by cross contamination. But for me, the ultimate outcome of being ‘allergied’ is potentially death and let me tell you, anaphylaxis is fast and furious when it happens.
So that’s why, when I hear people complain about a lack of options, I get cross.
I would give anything to just have to avoid gluten. I guess I’m saying I’m a bit jealous and see life as being much easier only having to avoid gluten. But many coeliacs don’t have to avoid gluten, they also struggle with dairy… and other allergies too.
I’m not trying to play allergy top trumps, or compare who has it worse. I’m just taking a lens to how I live my life. In daily fear of death. Sometimes my anxiety goes onto such an alert I get panic attacks.
I would love to be able to try being vegan, but plant based diets would be so limiting for me with my already limited diet, including an allergy to nuts, soya and tomatoes – the basis of a lot of vegan meals.
And so much shame…
Finally, it’s taken me years to develop confidence in my allergies. I now feel that I have control of my life and my allergies do not define me or shape me, but they do affect how I live my life. In the past I’ve always felt embarrassed and ashamed to speak up, because you can see on people’s faces what they think.
It’s in the eye roll. It’s in the sighs. It’s in the fake smile that doesn’t reach their eyes.
It’s in the things they say. “Just a bit’s OK though?, Can you take an antihistamine? It should be OK for you. We can’t guarantee…”
“Shall I check?” erm yes please.
A lifetime of feeling smaller. Of hiding and limiting my life.
Of feeling like I need to beg people to take me seriously. It’s exhausting.
I don’t think Vegans feel like this. I have many friends who are vegan and they, quite rightly, feel proud of their status and their values and beliefs, the reasons they follow a vegan diet do define them. They certainly don’t ever feel any shame, embarrassment or limiting beliefs. On the contrary. They want the world to know. They are fuelled by their passion.
Sadly I suspect coeliacs also get the eye rolls and confusion as this is also a greatly misunderstood condition. And having now heard from so many of you since writing this, it would appear that GF cross contamination and not being taken seriously applies to us all.
When I ask for an allergy menu I often just get the Gluten free menu. This has 3 impacts for me.
- If a restaurant is thinking about things being gluten free, the chances are they will take other allergies seriously too or at least have thought about catering for special diets.
- With a wheat allergy myself this is at least part way helpful as I now only need to discuss nuts, dairy and soya.
- Gluten itself isn’t what we mean when we ask for an allergen menu. so often it feels like staff are not listening. They hear nut allergy and think gluten. That’s worrying. I hear from coeliacs that they often get a vegan menu… so it appears to work both ways. Waiting staff either only have one menu to give you and it’s Gluten free or Vegan or they’re not really listening or understanding. Either way it’s a tricky situation to navigate, trying to understand where you stand and potentially how safe you will be.
But I don’t think being Coeliac is looked upon with quite so much distrust as allergies. I don’t think the coeliacs I know ever feel ashamed. They definitely feel misunderstood and frustrated as not everyone knows what it is – an autoimmune disease. But I feel like Coeliacs really own it. They’re protective, they’re passionate and they’re bold about asking for what they need.
But for us allergy folk, people think we’re faking it. Making up our allergies. They think we just don’t like certain foods. They think it’s a fad, a lifestyle choice, a dietary phase we are going through. I think we are far more timid, ashamed and embarrassed. I don’t know why but it always feel like a weakness, like it’s my fault. Tha’ts entirely my fault and my take on this.
Despite deaths from allergies now getting widely reported on the news, people still don’t understand how serious anaphylaxis is.
So what I’m trying to say is. Please be grateful for what you have. Because I am so grateful for even the smallest things.
I actually do quite like fruit salad as a pudding… She lies… she lies… #fruitisnotapudding
And please, if you don’t have an allergy, stop saying you do! Just be honest. Say you have IBS, or an intolerance, or follow a fodmap diet, or find too much gluten bloats your belly. All chefs want you to enjoy their cooking, so they’ll know how to advise you and what to give you to keep you well. Just own your choices and your situation. Be honest and open and talk clearly. If you don’t have an allergy you don’t get to use that word!
By saying you have an allergy you just cloud the already muddy waters, especially when you’re spotted eating some cheese or ordering a pudding as a treat. Don’t make the kitchen clean down an area, take extreme precautions or prepare a special dish when it’s not necessary.
I’ve heard from coeliacs that people often do this too, say they are coeliac, order a gluten free meal and then have a beer or a bit of bread. They either aren’t coeliac, or are a coeliac taking risks. Either way they put the rest of their community in danger because see this behaviour and assume that it’s ok for all coeliacs to have a bit of gluten, and it’s not!
Because you make life so much harder for those of us living daily with the fear that this might be our last.
If you loved reading this blog, you’ll also love Should people with Coeliac disease really shut up? By Sarah, The Gluten Free Blogger. It’s brilliant, funny, thoughtful and actually did make me realise I shouldn’t compare Coeliacs with Vegans, because we all face many of the similar challenges.
I’ve left the heading as it is so that all the comment still make sense. It has started of a very interesting, heated and important debate. Let’s keep talking. And in future I’ll find kinder and more constructive ways of making my point.
Together we are stronger. And THIS is exactly why I wrote this blog. To spark debate, to make people stop and think, to raise my head above the rest, to shout. Oi! You! And it did make people read it. The headline was sensational, it was spunky and shouty but it got people reading.
I’d love to know your thoughts.
Just brilliant. So well written. I have been feeling just the same about this issue. There’s so much choice out there for vegans and coeliacs. What about those living with proper, serious allergies? It’s rubbish!
Ha! I’m so pleased someone agrees. I was slightly nervous of sharing this… I still might unleash a wave of hatred but I hope people can take this in the way its meant.
Well said Ruth, it has annoyed me for years. Being a vegan is a choice, they will not be ill if they eat non vegan food. Being a coeliac is a little more difficult, but there are plenty of alternatives now and suggest like those of us with so many allergies, cook your own. I would love to eat out but I am grateful to be alive with a wonderful supportive family who cook amazing things for me. xx Jacquie
Hi Jacquie, yes I think living with multiple allergies is far more limiting and terrifying. I’ve actually come a cropper for assuming vegan food is actually vegan when if often isn’t. Ate something that definitely had traces of dairy a while ago… only to realise vegan isn’t always completely animal free. something I’m sure many vegans are not aware of and would not be happy to know. I guess I’m jealous and would love to have the choice a vegan has… and the extensive choice of options a coeliac has. Thanks for your comment. Hope you’re well and glad to hear your family are as supportive as mine.
Thank you
Thank you for reading…
That is so true and so humbling. Take care of your self as you always have done . Otherwise quite simply you would not be with us. X
I will do! Always trying to be careful. And no, you’re right! It’s just a lesson to be aware of what we have and be grateful. And consider our behaviour in life and how that affects others. thanks for the comment and for reading.
I guess it’s down to the individual we are all quite rightly entitled to our opinions. I’ve fallen into the trap of angry mummy recently (this category is worse that the ‘Karen stereotype’ on steroids.
Because it’s my 16yr old daughter who’s the Coeliac I’ve grown defensive on her behalf. T0 think that places she can start to go to are slowly receeding back in time to before they offered gluten free options is upsetting. I guess you don’t know what you’ve got till it’s gone right?
Of course this is all by-the-by because dreams of my daughter going to places to eat is a pipe dream for me for now as my two hate going to places to eat as a whole due to their autism so when we do go all my hard research to make sure things run smoothly without surprises and meltdowns is often in vain anyway….throw Oh sorry we can’t now cater for your daughter into the mix and you may as well drop an atomic bomb on our table!
Plus the fact that my daughter is Type 1 Diabetic so if this does happen we then have the issue of finding a place to eat fast or going home so her blood sugars don’t plunge her into a hypo.
But as I say to so many people, we only know what WE know. Walk a mile in my shoes before your judge.
As always I love you Ruth and your opinion is 100% valid and true.
And so is mine.
So true. I think I fell into a Daily Mail headline after feeling so despondent lately and I guess jealous and confined by my own restrictions. But one thing you said does ring true. I think it’s due to covid and hopefully will reverse and return to previous levels, but any kind of allergen free or gluten free offering over the pandemic seems to have disappeared. I’ve definitely noticed less choice in supermarkets. Let’s hope this is a temporary thing and will return to what it was. And you’re right, walk in my shoes, walk in your shoes, walk in Bethany’s shoes and everyone would see a different perspective. We need a girls meal/night out soon! Get the gang together. More kindness needed. More empathy required. And I promise no more Daily Mail headline rants! I do know what a struggle things are for you and your family. You do an amazing job looking after them all and advocating on their behalf.
You will LOVE Sarah, The Gluten Free Blogger’s brilliant reply to my ranty blog… check out https://www.theglutenfreeblogger.com/coeliacs-shut-up-response/
I understand your frustration! It sucks to not be believed.
I get this all the time. I have to avoid foods because it’s medically necessary too. Mine won’t kill me immediately like anaphylaxis would will but instead causes me to be severely vitamin deficient and anemic to the point of needing infusions. I get itchy patchy scaly rashes that even the most potent steroids can’t get rid of. It’s not just a tummy ache for me. Sure there’s more choice for me now. It’s better than just bananas like the olden days but that gf brownie at the Cafe is probably not actually gf if it’s baked in house.
We’re not that different. The shame, the eye rolls, the annoying comments… they happen to people with celiac every day. The people that say they’re gf but have a beer with dinner make the world less safe for me too.
I could have written this article but subbed fad dieters for celiac, which is maybe why I felt the need to comment today. Lumping vegans (people with a choice about how they eat) with legit Celiac Disease is a choice I guess. Maybe you meant people that are gluten free as a diet?I hope that’s the case here.
I’m sorry you feel like we are part of the problem instead of an ally.
I think I agree with you actually and I did feel a little uncomfortable about the title when I posted, I wanted to start a conversation and have a debate and I do realise It was wrong and unkind to lump coeliac in with vegans as that is literally just a choice. I completely understand that celiac disease is a very life limiting condition with no cure. I know too from my firiends who are coeliac that they often are very ill after being glutened – what is the long term damage done by that? So in hindsight I agree, we are stronger standing together and I meant no insult or harm. But there is a distinction here. I have had to learn to live with crippling panic attacks to even leave my house. After facing death on the last two anaphylactic reactions I have lost trust and live in a very great fear that I will die one day from this. I spent a year refusing invitations to eat out so covid has been a dream for me. But that’s not living and I was lonely, since I also live alone. So I guess what I wanted to discuss was that it is unique for those of us with anaphylaxis. We fear death. Sometimes I wonder if I should just stay at home. But it’s a disability that should not confine us to our homes. Coeliacs deserve a safe meal. So do vegans. So do people with allergies. And through the therapy I have had to help me live with this fear, I’ve learnt such deep gratitude for what I have. And I’d just been hearing people complaining about lack of choice and it sparked this idea for a blog about being more grateful. And it makes me jealous and angry sometimes wishing I didn’t have these allergies. But acceptance is key to moving on. So please accept my apologies for any offence caused. It was said tongue in cheek. And I had sparked debate. We are talking about the challenges we each face and THAT is exactly what i wanted to do. We have a long way to go and covid has taken it all a step back I feel but we need to demand better. The food service industry needs to give is the allergen information and we will find the places we trust. Yours with a gluten free brownie xxx Finally thanks so much for commenting. If you haven’t read it yet, please read Sarah;s response to this. Link above. She’s a coeliac also and I think this whole thing is something we all need to talk about. Because in so many ways we do face many of the same challenges.
I’m really sorry to hear about the difficulties you face and can only begin to imagine how difficult eating out is for you. However, lashing out at coeliacs and lumping us in with Vegans (who although I fully respect their food choices, are still choosing rather than living with a lifelong medical condition) is really unfair. Those of us who have food related health problems should be building one another up and advocating for places to become better at management of all food related health conditions, be that autoimmune diseases or allergies.
As a coeliac, my autoimmune disease means that I have brittle bones, chronic fatigue and infertility, plus another autoimmune disease secondary to coeliac. So no, eating out won’t put me in to anaphylaxis, thank God, but everytime I have inadvertently consumed gluten through someone not understanding, or being careless, my overall health and my chances of conception get a little worse. A familly friend passed away of complications related to coeliac disease, it is not a simple condition.
Today, I called in to a lovely local coffee shop who advertised gluten free, dairy free and vegan options. When I asked if their gluten free products were prepared separately to their other products I was told ‘we can’t guarantee anything, if you’re coeliac I wouldn’t risk it’. This happens time and time again… Our choices look good, you’ve seen ‘GF’ marked on menus, but when you delve a little deeper actually options are often limited if we don’t want to risk causing more internal damage with months of recovery.
I have not come to cause an argument, but I did find your post hurtful and its made me a little emotional. I want to advocate for better education of food establishments and more choice for all, not one upmanship.
Hi Claire, thanks so much for taking the time to reply. I am so so sorry if my headline and this blog was hurtful. It wasn’t meant in that way. it came off the back of me dealing with a little bit of jealousy and rage at the work (OK a lot) and I took out out in the headline. I completely agree. having coeliac disease is nothing like being vegan and I do feel that you’re right, it is unfair to compare the two. I’m sorry about that and apologise for the offence caused. However it did make you read this. It did make you comment. As a blogger it can often feel like your throwing your writing out into the large great abyss and noone reads your stuff. I don’t want to be offensive at all and most of my blogs aren’t like this one at all. But I wanted to spark a debate. I wanted to get people talking. And in that I’ve succeeded. I hadn’t considered that Coeliacs also got told that not all things marked GF are actually gluten free. I had wrongly assumed that if it said Gluten free it has to be less than 20 parts gluten or whatever the law is. This is wrong! People shouldn’t label things GF if there’s a chance of contamination. It just be very frustrating as I guess many people won’t ask the question. and since some coeliacs don’t get obvious symptoms that could be very damaging. So I’m sorry. I didn’t mean offence.
But there is one small distinction – that anaphylaxis could cause my death. Having woken up in intensive care on the last occasion and had some many blue light journeys to A&E over my life, it’s something that causes me a lot of anxiety and fear. I live with that every day. And that’s where we differ.
Thanks so much for joining in this debate. I agree, we are stronger together and I regret lumping coeliacs in with the vegans. BUT it got you reading! Not sure how we move forward to make things better and improved choice, safety and healthy lifestyle choices for us all but this is a start.
Truthfully, this blog left me feeling angry, and I chose anger when I tweeted about it.
Reading the replies to the blog, and your replies to the people commenting has helped to put that fire out. I can’t say more than what everyone else has said. Eating out as a Celiac is a minefield…nothing is as GF as it says on the menu, because there is no standard in restaurants. We just have to ask our questions, and hope that we get the answers we need in order to eat there comfortably. Most times, unless it is a 100% GF restaurant, we don’t.
However, I also see things from the anaphylactic side, as I have a mystery allergy that has put me into anaphylactic shock on two occasions. That fear is always there, and I carry an epi-pen with me all the time because of it.
I’m sorry you deal with a deadly allergy. Food allergies in general cause all kinds of social anxiety that many people just don’t understand. Eating is a social event for many people, celiacs included. We have a lot of the same issues as you do, admittedly on a smaller scale when in respect to anaphylaxis.
I think your title pitted us against each other right at the beginning, rather than bringing us together to fight as one. Hopefully we can work together to move forward, without placing one ailment above the other. I think combining the resources of the allergy and celiac communities could lead to great things.
Respectfully,
Michelle
MGFKitchen
Hi Michelle, It’s OK, no apologies required. I admit I used a silly headline grabbing title because I wanted to talk about this. I should have expected the response, and how would I feel reading a blog that said “People with allergies should shut up?” Probably similar to your angry response. Sorry to hear you have an unknow anaphylactic allergy! I cant’ imagine how terrifying that must be… when will it strike again. That’s awful. It’s a wonder we ever leave our houses but noone should be confined to home to stay safe.
However I think some of what I set out to discuss was misunderstood. I wasn’t comparing CD with veganism. I was stating that the options for both coeliacs and vegans are far greater than they are for me. That should not be controversial. That is not comparing CD with veganism. That is comparing food options. However having now gone into deep debate over this I’ve learnt quite a lot about how hard it is for coeliacs too. We are all in this together, so thanks for joining the debate. I think the twitter thing got me running to hide. I really didn’t expect quite so much anger. We should all be able to discuss this, even being angry without getting too irate. Thank you so much for reaching out and commenting. And wow! What a debate we’ve had!
Coeliacs ‘have it easy’ and ‘should shut up’? What a horrible thing to read so soon after coeliac awareness week. I believe that those with coeliac disease and those with allergies should work together to promote a better understanding of dietary requirements, not attack each other while complaining about who has it harder. This is so disappointing, I am sorry to see click bait headlines being used to ultimately hurt other people, instead of helping out. Coeliac disease is a serious condition and it’s articles like this that cause further confusion and upset. This is offensive, hurtful, and ultimately is spreading misinformation and trivialising a serious lifelong health condition.
Hi Rebecca, I’m sorry you feel this way. And in hindsight the heading was misleading. However I did not mean to cause offence. I do understand what CD is. It was never meant as an attack. If you read above I have never said CD is not serious. I understand how hard it must be.
I wasn’t comparing CD with veganism. I was stating that the options for both coeliacs and vegans are far greater than they are for me. That should not be controversial. That is not comparing CD with veganism. That is comparing food options.
Living with the fear of death is hard and I was merely starting off a little rant, discussion.
But I am sorry for the offense I have caused.
I was also trying to say that we all need to be grateful for what we do have. We do have a lot more choice now. Gluten free, vegan and freefrom options have never been better. So I think I was just trying to say, don’t complain if you don’t have enough choice.
Anyway I hope we can all move from this and work together to continue to raise awareness of the challenges we all face, because many of them are similar.
I admit that when I saw your first version of the post I was one of those who felt quite hurt and angry. Now I have found this updated version I applaud your edits and think it’s great that you took the time to listen to feedback, rewrite, and make it more inclusive. I really believe that those with dietary requirements should work together to raise awareness and get them taken seriously, for the safety of all. Coeliac disease is serious, and so are allergies, and I hope in the future we are all looked after and catered for!
I actually learnt a lot from this whole debate so I guess in that way it was very interesting for me. I do see us as a community who need to work together as we do face many of the same challenges. I guess it was coming of the back of my own PTSD and the struggles I have with panic attacks and anxiety about eating out anywhere. So when I heard someone complaining recently that there was only one safe cake (this was a properly packaged and labelled cake) I just felt a bit of jealousy. We all have our challenges to live with. And yes I did reread my blog and address some of the issues raised by people over on twitter. I never intended any offense. Thanks again for the comment and for joining in this very interesting conversation!
I agree with a lot of you what are saying and am sorry that eating out is such a challenge. On the issue of veganism as a personal choice–I read this a lot. I would like to quote from the beginning of an article “Is Veganism a Personal Choice” and recommend people read it if they fall in the second category.
“We often hear people say that being vegan, or not being vegan, is a “personal choice.” But, is it really? First, we have to break down the two ways in which this response is mainly used. Typically, the assertion that veganism is a mere “personal choice” is used by those of us who are simply unaware of the issues surrounding the use of animals by humans, but this same argument is often used by those who are more than vaguely aware of the moral dilemmas involved with using animals and are unwilling to make a personal change to align our core beliefs and actions.”
https://www.huffpost.com/entry/is-veganism-a-personal-choice_b_3292144
Hi Judith. that’s an interesting point and I agree. I respect totally all vegans. If you strip it back to the treatment of animals and the fact that they have as much right on this planet as we do, it isn’t a choice. It’s impossible for a vegan to see life any other way. I get that totally. I aspire to being vegan and eat a very vegan diet at home, but eating out would be pretty impossible for me. I am researching protein sources myself at the moment to see if I can reduce my meat and fish intake even more. I really feel strongly about improving how we treat animals. But one that a vegan would never know, was whether their vegan meal was cross contaminated. The vegan society is happy for may contains to be on vegan products (if this is wrong, I’m quoting someone from a talk i’ve just been on) so that vegan products are not free from dairy, egg or fish. The allergens they need to have labelled. They can contain traces. So that makes it dangerous for the allergy person. But the vegan would possibly not even know. I think that’s the distinction i was trying to make.
There isn’t any fear of death involved.
I hope I’ve got that straight. But thanks for the link. I’ll have a read. I have many vegan friends and love to bake them vegan treats which we can all eat. I’m getting quite good at it! And it’s reducing my use of eggs for instance.
Thanks for your comment. This debate is actually really interesting.
@whatallergy hmm – well I have both gluten intolerance (suspected coeliac) and so many food allergies that I can be on both sides of your argument lol. I completely related to this: “… If staff will enter into any conversation with me to discuss what’s safe, what’s not, what I like, what can be adapted… I’m already buzzing and chuffed that someone cares….” and wanted to point out, from the Coeliac POV, ENGLAND gives a lot of choices. The rest of the world, especially non-first world countries, do not.
Hi Serena, lovely to hear from you and thanks for the comment. You’re right, we are so fortunate with the amount of choice we have here in the UK. Let’s hope restaurants continue to see us as worthy of being customers and give us the support and respect we deserve. There are great and safe places to eat out there. And now more than ever they need our support! I’m just about to book a table at my favourite restaurant for my first proper meal out! Eeekkk. Bring it on.
I feel for you My granddaughter had a reaction recently. We had asked for the sandwiches to have either ham or marmite as she is dairy intolerant and we provided the margarine. However people with no problems don’t release that ham should be ham We were given a ham look alike with all sorts of added things. Yuk
Hi Liz, yes it’s hard isn’t it. Processed meat like that is not food in my opinion! Yuk indeed. Also the bread can contain milk so watch out for that. Did the ham have milk in it then? Urgh. horrible. Stay safe and keep looking after your granddaughter!
I think this is a great post. I’m a coeliac, and I’m with you all the way, but I think it’s taken me years to understand exactly why you’re right.
We’re all selfish buggers at heart and we care most about ourselves. It’s only because I’m lucky enough to spend time in the allergy community that I know there are far worse things than CD, and although having this auto-immune disease is really shit and can have a serious physical and mental effect on your life, it’s really not the same as having a life-threatening allergy.
I’ve learned a lot from people with allergies. I see parents with highly-allergic kids who are anaphylactic to multiple foods, trying to protect them and at the same time enable them to live a normal life – knowing that at any moment the worst could happen. These parents live with the most unbearable fear.
If you live outside the allergy community, and unless you have friends with friends with serious allergies – it’s almost impossible to understand the impact this on your life, and the potentially catastrophic consequences of the slightest accident or mistake.
I’m not saying this is, or should be a competition of awfulness. What I’m saying is that we spend our lives locked in our small worlds and when we look out we can only see things from our own perspective.
Our strength as a community is when we come together. If we just left our individual boxes more often we’d come to realise that there are actually far worse things than CD.
Thanks for this lovely response Sue! I’ve been a little chastened and scared after upsetting quite a lot of coeliacs on Twitter this week. And they are completely within their rights to be cross, but I don’t think they quite understood the point I was getting across. I’ve learnt along the way with multiple allergies that I have to reframe things and focus on what I can do, what i CAN eat and I CAN eat everything else that’s not my allergens. That’s a lot of food, And for a coeliac, only having to avoid gluten is a lot easier. And I guess the whole, I’m worse than you, top trumps of awfulness was the only bit about this whole discussion that didn’t sit right with me. You’re right, it’s not a competition. But we all need to just as you say, step outside out box sometimes, to see what it’s like for others. Everyone has their challenges. We all deal with these in different ways.
And having choice of brownie and just a fruit salad is a first world problem. I wanted to, in a very ranty way, get people to see how bloody fortunate they are. I know how fortunate I am. I love food and try to eat as varied a diet as I possibly can, within my limitations. And I am always, always just pleased to be living, loving life and still here to wind up the coeliacs and vegans. So thank you for understanding.
This is not a competition. We are in the same community and we just need to understand each other, accept our situation and work at how we can make things better.
And I appreciate that telling people to shut isn’t possibly the most constructive way to go about that but god damn have we had a heated debate!
So true! My 5 year old daughter has multiple food allergies and I am a vegan (the transition from 30 years of vegetarianism was partly inspired in solidarity with her as she has a milk allergy)…totally agree that cross contamination and limited choices can be a bit disappointing but they are the least of my worries! Just I beg don’t play Russian roulette with my daughter’s life! It’s difficult enough having to be that person who has to speak up, especially if you are shy so the least you can hope for is to be listened to and taken seriously.
Thanks for a great site – was signposted by NARF X
Hi Catherine. Oh how lovely. I know Tanya at Natasha’s foundation. They are such an inspirational bunch. And gosh you are right, it can be like Russian Roulette. I wonder sometimes why we don’t all stay at home and never go out. But that’s not living is it? I am eating less and less meat and fish and animal products. I can eat egg but so many people following me can’t, so I end up cooking and especially baking without animal products for my egg allergic and vegan friends. It’s possible and results can be pretty good. Milk allergy is actually very common, people think nut allergies are the most common but I think it’s actually milk, and it’s so hard to avoid. keep on advocating for your daughter and teach her not be ashamed. Be out and proud! Be vocal. Be her voice. Thanks for your lovely comment.
Hi, a really interesting article with so many good points. I actually found this through the gluten free bloggers article and wanted to read the reason for the response. I have coeliac and found it interesting that you fid that people don’t take allergies seriously. I’ve normally found the opposite when eating out, because Coeliac disease isn’t necessarily a life threatening allergy, the majority of wait staff don’t take it seriously. ‘It’s not going to kill you though right so a bit won’t matter?’ And then the majority of wait staff in response to does it contain gluten, will response with no it has milk in it. Really interesting article though, made me appreciate the existence of GF menus. I don’t think that allergies are considered enough and that there are a lot worse things than coeliac.
Hi Florance, at first I really wished I hadn’t written that article as I the twitter backlash was terrifying! LOL. However it is a conversation we all need to have. Clearly the waiting staff aren’t listening properly to any of us! If we all get those random answers to our questions.. like a mention of milk when you ask for the gluten free menu. And for me, if I mention my allergies I get brought the vegan or gluten free menus. These obviously help in a way as they’re already highlighting slightly safer dishes, but it’s not quite getting to the point. Communication between waiting staff and customers and then waiting staff and the kitchen and chef is key here. I think that’s where things go wrong.
And I can feel more blogs percolating now.
We should all be safe.
The person with coeliac disease should be able to get a gluten free meal.
I should be able to find out what dishes contain allergens and the kitchens should have some measures in place to help them keep dishes allergen free and uncontaminated.
People with intolerances and IBS should also be able to get a safe meal that doesn’t send them to the loo or struggling to balance a tricky gut and bowel for days afterwards.
Vegans too should have some choice.
And we are all lumped into the same box, yet our needs are very difference.
And just because CD isn’t life threatening doesn’t mean it should be taken any less seriously!
Thanks so much for your response. I’m loving this whole debate. It seems we’re maybe not so different after all.