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.
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.