‘Do You Want My Family’s Business?’

Unknown-2SO, YESTERDAY WAS my debut into the (sorta) professional world of allergy. I was a guest speaker at a seminar for the catering industry on the upcoming changes to food labelling.

Despite my strong views on the subject, I wasn’t there to pontificate on the rights and wrongs of the new labelling legislation – I reckon that would only confuse the catering delegates even more, and I can tell you after yesterday that many of them are already confused enough about existing, never mind impending, allergy regulations.

I was invited as an ‘Allergy Mum’ by the organisers FATC to speak about the daily struggle to find safe places to eat, and food to buy, for my child.

So below is my presentation. It wasn’t slick, and my PowerPoint skills are rudimentary, but I hope it got some people thinking about the struggle we face to find allergy safe food. It is, as fellow speaker Michelle Berriedale-Johnson of Foods Matter succinctly put it, a “pain in the balls”.

Do You Want My Family’s Business? (Life is nuts with an allergic child)

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Hello, my name is Alexa and I’m an allergy Mum. This is my son Sidney.

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He is nearly three. He has potentially life threatening allergies to peanuts, tree nuts, egg and sesame and, on the weirder side, lentils, green peas and chickpeas.

The first we knew of it was when he was rushed to hospital at barely five months old after having an allergic reaction to a trace of egg on his skin. To our horror, skin prick tests then threw up a catalogue of foods that could prove lethal for him.

Happily, he has since grown out of allergies to both wheat and banana (it’s only when banana becomes the enemy that you realise there’s a baby wielding one around every corner).

The other allergies, though, look set to stay. There’s only a 10 to 20 per cent chance he’ll outgrow nuts and a 50 per cent chance he will be able to eat egg one day.

We are not cranks, or faddy eaters. As a family, we love to eat out. I’m half Italian, half Jewish. What better in life than food?

Over time, we’ve learned how to handle his allergies. He is at home with me full-time and we are hyper-vigilant so that (touch wood) he hasn’t had a bad reaction since diagnosis. But I won’t lie: it’s not an easy run.

I worry about the day he goes to school and his classmates are eating egg sandwiches, about play dates at friends’ houses and parties and school trips and getting drunk as a teenager and kissing a girl – or boy – who had peanut butter on toast for breakfast.

I worry when we’re in the park and another toddler comes careering towards us with an ice cream. I worry that the smear of something on that table is hummus. I worry that he just fell and put his hand in the remnants of a nutty cake.

I’ve been known to break down in tears in the supermarket aisle, unable to find a single thing not emblazoned with the dreaded phrase ‘may contain nuts’.

This is the meat counter in Waitrose.

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This is the fish counter in Sainsburys.

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This is the shelf full of healthy snacks for toddlers.

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Every single one of these packets contains a nut or sesame trace warning.

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This is kids’ yoghurt.

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This is Sainsbury’s fresh cream.

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These are the advent calendars in Sainsburys.

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And Marks & Spencer.

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Every single one of these contains a nut warning.

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I think you get the picture…

Grocery shopping takes an eternity. I can’t just shop in one store. Last week, I had to visit Waitrose for his cereal, Morrisons for his dried fruit snacks, Sainsbury’s for mini yoghurts, Marks & Spencer for ice-cream and bread and Whole Foods for his nut free porridge.

Then, even if I’ve bought a product a hundred times before I still have to scour the label to make sure they haven’t suddenly started introducing a contraband ingredient.

If I am lucky enough to find something new that looks promising – a packet of breadsticks, say, or a loaf of cut bread – I can’t just rely on the label to tell me it’s safe to eat.

As you know, it’s not obligatory to declare the presence of traces, or whether the product has been manufactured on the same line, for instance, as nuts or sesame. I wish it was.

Because I then have to go home and contact the manufacturer. More often than not I find myself having to chase my query several times before I get even the semblance of an answer weeks down the line.

It took me four whole months before Unilever answered my question about which ice creams were egg and nut free, and whether they always declare the risk of traces on their packaging. By the time I got the answer – last Tuesday – it was too bloody cold for ice cream anyway.

It took four weeks for Pizza Express to tell me the ingredients in their gluten free pizza bases.

In both instances I was given the wrong information first.

Then, alongside the worry that your child might accidentally eat something that could kill him, there’s the upset of knowing he will always be left out, try as you might to include him in everything possible.

At birthday parties it’s heartbreaking to see all the other kids tucking into fat slices of Peppa Pig cake and bowls of ice cream and your own child perched on a chair beside them – after you’ve wiped down his table with Milton’s sterilising wipes – quietly munching on the ‘safe’ treats you packed into his lunch bag before you left the house.

When we go out for the day I bring breakfast, lunch, tea and a whole bagful of snacks. Plus extras in case we get delayed, waylaid or lost on the way home. And, of course, we can’t even nip to the shop without making sure we’ve got his two EpiPens, antihistamines and syringes. Our daily mantra is: “Have you got the drugs?”

Even our trip here, for just one night, involved military planning. I fed Sidney a homemade lamb stew for lunch before we left home yesterday because I knew there would be no chance of a hot meal for him during our stay.

I’ve packed his safe bread, his breakfast cereal – because a buffet is no-go with allergies. I’ve got avocados, bananas, two cans of butter beans, a pack of Babybel and some oatcakes because there’s nowhere to store proper meals or to heat them up. Hotels are generally a no-no.

Don’t even get me started on airports, trains, leisure centres… hospitals. One of Sidney’s little allergy friends was admitted for several days with severe asthma and his parents were told the hospital could not guarantee any of the food would be nut free. His Mum was forced to go home – an hour’s round trip – to prepare safe meals for him, when the last thing she wanted was to leave his side.

It’s not because we don’t want our children to eat out. I can’t think of anything more wonderful than to be able to stroll into a café and order Sidney a sandwich. He would be over the moon.

But the fact is that wherever we go it’s virtually impossible to find anywhere for him to safely eat, or buy a snack.

I certainly haven’t found a single place that can cater for my child without my first having to send emails, make phone calls and issue a catalogue of demands to organise things in advance. That’s OK for the odd special occasion. But day-to-day? It’s exhausting, impractical and impossible.

When we go into cafes and restaurants – and I’m talking big chains too – more often than not the staff have no idea about their processes for avoiding cross contamination, so we have to wait until they can find someone who does. Meanwhile, my three-year-old is snapping at my heels because he’s hungry and the baby wants her milk.

Baby crying, mother in background

Often we are seen as an inconvenience or just told ‘we can’t guarantee no traces’. Game over.

In my local park café, run by Company of Cooks, I was refused an ingredients list because the chef said his recipes were secret.

Elsewhere I’ve seen so-called ‘gluten free’ and ‘dairy free’ cakes nestled up alongside cream-filled and wheaty buns, queried this with the manager and been told it’s not possible to guarantee they are safe for those with allergies.

So why bother? You’re just catering for the Gwyneth Paltrows of this world, then, and how often does she come into Costa?

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I’ve seen places claim to be allergy friendly, with the disclaimer ‘everything may contain traces of nuts, milk, eggs, soya and sesame’ written alongside.

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I’ve seen places claiming to be allergy friendly where the same knives were used to spread different sandwich fillings and the same chopping boards used for vegetarian and meat options. If they can’t get that right, no way am I trusting them with my son’s food.

But even among those who do understand cross contamination, there is another Big Bugbear.

IT’S NOT ONLY ABOUT GLUTEN!

Most of you here, I’m sure, are well-versed in the art of catering gluten free. This is brilliant.

But somehow ‘gluten free’ has also become shorthand for ‘free from’, allowing supermarkets and restaurants to tick the allergy box and assume they are doing a good job.

Did you know it’s pretty much impossible to find anywhere that will freely offer to cater for a child with a nut allergy, or an egg allergy, or – like us – a catalogue of the things?

Imagine you have a child who is allergic, say, to wheat and egg, or wheat and nuts.

Here is the ‘free from’ bread shelf in Sainsburys.

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Here is the gluten free and egg free bread they stock.

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Here is the ‘free from’ cereals shelf.

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Here are the cereals free from nut traces on that shelf.

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The fact is that there are 8 major foods responsible for more than 90 per cent of allergies – milk, eggs, peanuts, tree nuts, fish, shellfish, soy and wheat.

The EU recognises 14 major allergens, adding sesame, celery, lupin, mustard, sulphites and molluscs to that list.

Why not make at least an attempt to cater for some of those, some of the time?

Consider the stats: 7 in 100 children and 3 in 100 adults have at least one food allergy. 50 per cent of those is allergic to more than one food.

One in 100 adults and 2 in 100 children are allergic to nuts.

These numbers are increasing, with a 20 per cent rise in childhood food allergy in the past ten years.

Meanwhile, 1 in 100 people is Coeliac. 2 in 100 is vegetarian.

Now we do pretty well for the vegetarian and gluten free among us. Isn’t it high time those of us battling nut, or sesame, or egg allergies were given a thought as well?

The fact is, families like mine are a huge consumer group. We love to eat out. We are noisy and we talk to one another – via blogs, support groups, Twitter – all the time. If we find somewhere safe, we will shout about you from the rooftops.

There is a huge buzz, for instance, at the moment around a company called Ilumi, that makes ‘posh’ pre-packed meals free from 12 of the major allergens. My husband isn’t allergic to anything but he loves their curries.

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Venice Bakery, who I believe are here today, make pizzas and breads free from wheat, gluten, dairy, soy, egg, corn, nuts and sesame.

ZeroZebra is a fab children’s chocolate and biscuit brand free from all 14 ‘big’ allergens.

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All of these are either produced in allergen free factories or tested for cross contamination by an independent lab – the gold standard as far as allergic consumers are concerned.

They also look wonderful. They show that it is possible to create properly ‘free from’ products that are of a high quality, and appealing to everybody. I just wish more companies were at it.

I know the idea of catering for allergies sounds arduous, and scary.

Yet the industry has to adhere to hygiene regulations. Catering for food allergies is just a stretch of those hygiene practices, carried out more scrupulously. I’m sure speakers later on today will go into the technicalities of how to cater safely for allergy. But it is possible to take it seriously and not run scared.

We found a wonderful place this summer, a toddler friendly farm in Cornwall called Higher Lank Farm where the lady who runs it, Lucy, caters for children with food allergies alongside those without.

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She operates from one kitchen and at any time can be cooking for children with a whole raft of dietary needs. Yet she has never once had a guest have a reaction.

For the first time ever we trusted someone outside of our family to cook for Sidney – an amazing high tea full of safe sandwiches and egg, wheat and nut free scones and cakes, and a roast chicken dinner with egg free ice cream for afters.

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What Lucy told me is what every allergy family wants to hear:

* I understand cross contamination

* Everyone who works here understands cross contamination

* I scrub everything down

* I keep foods strictly labelled and stored separately

* I use clean utensils for everything

* I check every label on every product

* I will not use any ingredient that may contain traces of your allergen

I’m not asking for the world.

Personally, I would be over the moon to find just one allergy friendly dish on a menu.

My advice? Keep it simple, keep ingredients to a minimum, so there is less cause for confusion.

What would I love to see?

Food not only cooked separately but stored and displayed separately to avoid cross contamination.

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* A gluten free pasta with a plain tomato, olive oil and basil sauce

* A straightforward meat and two veg dinner – roast chicken, sweet potato, broccoli

* An avocado, tomato and – for those that can eat dairy – mozzarella salad, no pesto

* A sandwich made with bread from a nut and sesame free factory

* A baked potato with beans

All I want to hear is that they’ve been cooked and kept away from other foods and that the butter or cheese or beans or sauce have come from an uncontaminated pot, and doled out with a clean knife or spoon.

Don’t ladle my son’s beans from a vat sitting next to another vat of scrambled egg.

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If you stock snacks, think about us, too. Dove’s Farm gluten free biscuits, Kinnerton nut free chocolate, yoghurts that don’t contain nut traces, individually wrapped cheeses, raisins. Nut free cocoa.

My son has never once been able to have a hot chocolate with his friends, because the cocoa is always a ‘may contain nuts’ product. Sell mini tubs of allergy safe ice cream. Purbeck is gluten, nut and egg free. Co-Yo is dairy, nut, soya, egg and gluten free. These brands exist.

At Disney in the US they are miles ahead of the game. They make a point of noting that they can cater for allergies to wheat, dairy, nuts, shellfish, soy, fish, eggs and corn. If you have any weird or wonderful allergies, they can cater for you with a few days’ notice.

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In restaurants, food service managers have yellow notepads to record the names of allergic guests, with a check-off sheet listing the big eight allergens and space for special orders. If you say you have a food allergy, a chef will come out to talk you through your order.

There is a dedicated allergy fryer for chips. Allergy safe food is brought out on a different coloured tray. They have griddles and panini makers for allergy guests only.

They note that they can’t 100 per cent guarantee no cross contamination but the fact that they make every effort to explain exactly what they do to minimise contact inspires trust.

Then there are the glowing recommendations from people with allergies who have had happy and safe experiences eating there. As soon as our little one is old enough to appreciate it, we will be going.

So, to sum up, what would I ask?

* If you’re a restaurant or a café, have a manager present to answer allergen questions when someone with an allergy pays a visit.

* Have a simple way of explaining your processes to customers – a sign on the counter or a note on your menu saying ‘we have this dish for multiple allergies’ and a printout detailing how you control cross-contamination. It’s not enough to have the lad behind the counter tell me ‘yeah, I don’t think it’s got nuts in it…’

* If you have a website, have a page with all this info right there. Don’t just tell me to ‘get in touch’ with any queries. Make it easy for me. I’ve just been to five supermarkets in one morning and spent a fortnight trying to get Marks & Spencer to confirm their sliced white has sesame traces. I’m knackered enough as it is.

* Have a full ingredients list ready and available.

* If you have lists of which foods contain certain allergens, list ALL of the major allergens. Very often I see mushrooms and tomatoes on those lists but no references to sesame, for instance, or mustard.

* Tell me which dishes can be provided free from traces of those allergens. I know you can’t promise me that a peanut didn’t blow into the field where the wheat that made your pizza flour was grown, but I can live with that risk. I can’t live with the risk that you rub down your pizza oven with nut oil, or drizzle pesto or spoon mayonnaise on dishes prepared in the same square footage of worktop

* If you can provide a nut or egg or sesame free dish – tell me! Shout about it! Don’t make me search for days, wading through all your allergen tables like a statistician to find out what’s safe and what’s not when all I want to do is stop off for a pizza during a shopping trip with my son.

* If your product is made in a nut free factory, put that on the label or on your website. It’s a huge selling point.

* If you are a manufacturer, have a ‘may contain’ labelling policy and a straightforward explanation of risk.

But probably most importantly, these two points:

TRY TO SOURCE PRODUCTS THAT DON’T CONTAIN NUT TRACES

&

PLEASE, PLEASE, PLEASE THINK BEYOND GLUTEN FREE

In short: make life a little easier for us. We will love you forever.

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28 Responses to ‘Do You Want My Family’s Business?’

  1. Katherine Farrow says:

    What a brilliant presentation. You totally capture how hard it us to be an allergy mum. My son was born with allergies to Wheat, gluten, soya, milk and eggs. He’s now nearly 5 and only the egg allergy remains. Good luck to you and Sidney and I hope things get better for you as they thankfully have for us.

  2. lizallan says:

    What an excellent talk – wish I could have been there to hear/see it myself!

  3. Carol says:

    Simply & eat said! Well done!

  4. Alison Monday says:

    Wow. Just wow! Brilliant presentation. I really hope caterers and manufacturers take note of everything you said. I am an adult with an ever growing list of allergies. I rarely eat out, even eating my dad’s or mother in law’s cooking is like playing Russian roulette, never mind trusting a complete stranger… The rare occasion we find somewhere prepared to feed me is a massive cause for celebration. I want someone to take responsibility for their kitchen and know exactly what goes on there, not bring out the ‘we can’t guarantee’ card. That’s no use to me!
    Please keep shouting – I’m sure it must eventually make a difference. You sound like an amazing parent!

  5. Charlotte Farley says:

    Brilliant post, and I just wish more people had been able to hear/see your presentation to actually understand how difficult this allergy business is. People say they get it and can try to understand but until they’ve spent a day in your shoes ie shopping/attempting to spend the day out entertaining a child safely/cooking let alone eating out they’ll never truly understand how hard it is. I haven’t had the tears in the supermarket moment but did at a birthday party when the mum (a close friend who knows of my sons allergies) put out peanuts for the grown ups, I left v quickly in floods of tears and she was mortified, and admitted she just didn’t think for that one minute when remembering to buy something for grown ups to eat.

    I think what I hate most is the fear, never feeling safe enough to let him run around without me behind him incase I see another kid with an ice cream or pretty much any item of food, as like you say with multiple allergies its pretty much guaranteed that everything will have something in he can’t eat.

    The gluten bit especially is so true. Especially at waitrose and m&s, all their free from stuff only appears to be gluten free, and they’ve forgotten/don’t care that other allergies exist, which is quite frankly insulting and one day I’ll get round to telling them that properly rather than just complaining to someone in store who doesn’t care.

    Final point! (Sorry for the essay but nice to have more than 140 characters!) I suddenly remembered the disability discrimination act 1995 which I learnt about at uni a long time ago, where part 3 says something about how businesses etc have to make reasonable adjustments to enable customers to use their premises/service whatever. Why can’t it be like that?!? Not saying everyone has to make everything allergen free but they have to try to at least do more than nothing to at least give those with allergies the option of being able to eat something safely.

  6. Claire Jermin says:

    Brilliant!! Standing ovation deserved. I hope more than lip service will be paid by the delegates. (Btw conferences and the like are a nightmare for adults with allergies, wonder how well this one was catered/labelled/cross-contaminated given the attendees)

  7. Linda Harris says:

    Very well said, I want to send a copy to every shop and restaurant in the country!

  8. Evaline Foster says:

    I only have a friend whose grandson has a nut allergy, If I was 20years younger I would start a business catering for the suffers ,never entered my head when we had a chip shop /cafe pure ignorance Good luck

  9. Nick Stafford says:

    I was lucky enough to hear Alexa at the event (attending as an ‘Allergy Dad’ – we spoke briefly at the end) and I have to say that I have rarely felt as moved as I was – truly inspiring. It did feel a little odd as the stories were so spookily familiar that I could relate to each and every point (my son has allergies to cows milk, egg and nuts). You underestimate yourself Alexa – I give and also listen to many ‘corporate’ presentations – it’s not about powerpoint, its about the message, and that came across crystal clear.

    I too picked up on the ‘confusion’ about the forthcoming regs, but I would at least hope that if they don’t yet understand HOW they need to change, they are left in no doubt as to WHY. Nice one – keep it up!

  10. Polly says:

    This is one of the best blogs I have ever read. I’ve had a severe allergy to all nuts for 21 years. Two years ago I discovered that I’m lactose intolerant (not severely) and that I also have coeliac disease. As well as having oral allergies to a lot of fruits.
    I completely agree how hard it is to find “nut free” food. In fact I’d got as far as saying that it’s impossible. My mum struggled all of my life to not wrap me up in cotton wool; she still does now and I’m nearly 22. It became worse as the allergy list started to increase and I realised how much harder it is with multiple allergies. I felt so down for the first year and eating out with my boyfriend or going on holiday with him became a chore rather than the exciting adventure that it used to be.
    It is hard, but you sound like you’re doing an excellent job. When I was your little boy’s age, allergies were unknown and I think my mum found it harder dealing with my friend’s parents than she did with our local supermarket. My whole life has been a struggle with regards to food, I ended up with an eating disorder and OCD at the age of 14 because I was just so scared of it. But with the help of my mum and a fantastic counsellor I got through it. There’s going to be a hell of a lot of obstacles that you’ll face (and overcome!!!). But you can totally do it! Let’s just pray that soon the food industry realises how big the gap in the market is for allergy friendly food!!!

    • Thank you Polly – I can’t imagine how tough it must have been going through allergies ten, 15, 20 years ago… we’re lucky that awareness has improved so much but, yes, there is a loooong way to go… So pleased you’ve come out the other side and hope things only continue to get better x

  11. Holly Pike says:

    Absolutely amazing everything you said sums up exactly how I feel going shopping !

    I have many nut free lists that manufacturers have sent me and I used to find it difficult even having a varied diet but I find sainsburys morrisons and asda to be the best for nut free foods!

    Totally agree the free from section is useless none of the things in that range I can safely eat apart from kinnerton or baking brothers!

    I have a website with more nut free stuff on!
    Brilliant to know someone’s speaking up about nut allergies and other allergies!

    Good luck!

    Holly Pike

  12. remcojanssen says:

    Thanks for your vivid presentation and blog, will share on Facebook and with family and friends in the hope they will understand our lives a little better.

  13. Sandro says:

    Your blog moved me to tears. I am in a very similar situation. My 16-month-old son, Jacob, is found to be allergic to dairy, soya, tree nuts and seeds, egg, wheat, meat, kiwi, fish, beans, sweetcorn, etc. The list seems endless to me. Every time we see the consultant, skin prick tests would add more things into this long list.
    Cooking and meal time are just nightmare. I tried to learn to cook everthing from scratch, including bread, biscuit, snack. And we need to monitor close at meal times as my other child, 3 year old, always interacts with him. (we dont avoid all the food that Jacob is allergic as its simply not possible.) From your blog, i feel that things will get even more diffucult when jacob gets older and further develops his taste buds. I just cant imagine him going a party alone or dining out……

    • Thanks so much for your comments Sandro and I completely sympathise with everything you’ve said… cooking everything from scratch can be wonderful but is also extremely stressful when you have literally no other choice and limited time.

      But I honestly wouldn’t say things will necessarily get more difficult – our little one is three now and perfectly happy to eat his favourite treats, which we supply when he goes to parties and out with friends. Obviously as they get even older and sleepovers and school rear their heads there are new challenges but I know from other allergy parents that it’s all manageable, if (always) worrying (!). I’d definitely recommend tracking down some fellow allergy parents on Twitter or Facebook – happy to pass on some good contacts – as they offer some brilliant advice on how to handle all the stuff to come…

  14. I feel left out since I live in the US! What a brilliant post. I felt like I was reading a book. A well organized and thought out book. Bravo and thank you for writing this. Even across the pond, things are no better and the frustrations are the same

  15. Jennifer Callaghan says:

    This is BRILLIANT. It’s so nice to hear someone else making the points I make on a daily basis and in a more eloquent and less annoyed (sounding) way. My daughter is allergic to sesame, lentils and salmon family fish, so none of the “regular” allergies. The number of times I have told people that sesame is not a nut…d’oh. For what it’s worth, I’ve found Sainsbury’s to be the most helpful, and Waitrose to be astonishingly obtuse in their answers.

    If anyone here has advice on avoiding sesame cross contamination risk in the U.S. I’d be incredibly grateful. Everyone keeps telling me that they don’t track it, which is fine per the FDA’s rules but doesn’t make trips there easy! Thank you.

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