#EasytoAsk? or is it??? Eating out with Food allergies...

I've seen a fair few tweets recently with #easytoask. They're aimed particularly 16-24 year olds, with food allergies. It's encouraging them that it is OK to ask about their allergens when they're out somewhere and ordering food. Those tweeting, are recognised bodies, with whom I don't like to quibble, BUT...

Personally, I don't like to put a damper on it, but I'm not so sure that it is so easy to ask!!

I was at a birthday party on Saturday. It was held at a local pub. Everyone else but I was eating. I was not eating by choice. I quite frankly couldn't face the bother. It was a large party and the order had being placed in advance 'en masse' by the friend's husband, and I simply didn't want to risk anything going awry. I'm not normally so cautious, as to not eat altogether, but recent events shaped my reactions...

Not so long ago I went out to eat for another friend's birthday, where I was expecting to eat, quite safely, as the restaurant is quite expensive and I thought they would be cooking to order. 

'No problem,' thought I, 'I've eaten here several times before. Whenever I've checked beforehand, it's all been fine.' 

So, a little complacent, perhaps, I turned up on the day, without my usual checks. I simply scanned the menu for something that looked pretty safe and when the waiter came, I asked for advice about the dish I had spotted. It looked to be a fairly simple sea bass dish - they are often my best bet.

He was a foreign waiter, but seemed to understand me. When I asked whether it would be free from gluten, dairy, soya etc. he wasn't all that sure; he thought it would be fine, but would check. 

All seemed to be fine, so the order was placed. Another friend ordered the same dish. As both were brought out at the same time (and not by the chap who had taken my order), I asked if the one I had been given was gluten free (always my starting point, as that's the one to which I'm most sensitive). 

Confusion flitted across their faces - this was obviously news to them.

'I'll just check!' one said, and off she went. When she returned, it turned out, no, mine wasn't gluten free, but they'd take it away and do it again. 'OK fine,' I thought, 'better safe than sorry - better that they have noticed and put it right, than I eat it and suffer later.'

I waited quite a while longer, before the dish returned, I started to peel away the wrapper (it was 'en papillote' - baked in a sealed package)... when suddenly a waitress rushed out to stop me!!

Oh!! 

Apparently this dish wasn't right either! They were going to do it again!! I was slightly peeved, and by now hungry! My friends were already pretty much finished with their main course, by then, and I was lagging behind. Other diners had come and gone in the meantime, but I thought, 'better safe than sorry'. 

Finally!

Finally the dish arrived and as no-one returned to say it wasn't suitable, I cautiously tucked in. Only by this time, my side order of fries was cold and so was the side dish of greens (which had also had to be returned as it hadn't been done correctly first time either - I'd asked for it to be cooked in oil rather than butter). Oh, and my friends, who I had instructed not to wait for me, were just finishing their dessert!!

One friend's comment really resonated with me. It was to the effect that she could now see why I don't eat out as often as she. (Only she used more colourful language, that I've edited out.) 

See my point is, it MAY be 'easy to ask,' but it's not always easy to get the right answer!



What are the potential problems?

1. Langauge barrier 

If the waiter/waitress/server does not speak English as a first language, it's difficult  to know if they completely understand the message that you are trying to convey. It's the reason why I tend to go self-catering when I'm abroad - if I read labels myself and prepare food myself, I feel much more confident of a safe outcome.

However, in this country it is also quite common to come across staff who don't have English as a first language, and some of those are in positions of management too. It's all very well and good if they are proficient in English, but slightly concerning when you need to get an important message across and are not sure that it IS getting through.


2. Lack of knowledge 

Unless you live with food allergies yourself, or have been trained thoroughly there may be gaps in the person's knowledge. The number of times I've been told, 'Oh, but there IS egg in it!!' when I've tried to confirm whether something contains dairy!! Of course, you and I know, that when I say 'dairy', I mean milk and the products made from milk. Milk (usually, although not always) comes from cows. Eggs come from chicken - completely different animals!!

By the way, I usually use the term 'dairy' as it is a much broader term than 'milk'. If I use the term 'milk' people do not always make the connection between  milk itself, and other products made with milk, such as butter or cream, or yogurt, or cheese etc.


3. Chinese whispers 

You may communicate perfectly well with the waitress/waiter, but what is the communication like in the kitchen? The more times the information has to pass through other people, particularly in a busy pressurized environment, the more chances there are that something can go wrong. 

I was particularly impressed with the Disney restaurants in Florida (you won't get the same service in Disneyland, Paris - just so you know), because the moment the server heard the phrase 'milk allergy,'( in regards to my daughter, who was still allergic at the time), they summoned the chef to the table and the chef actually CAME to your table and talked everything through with you. There's not many other places where we've been treated with anything like that care and attention! 

Reliable Rockfish!

It's also one of the reasons I love restaurants that will repeat back your allergy information as they serve the dish, or stick a label in that says 'dairy free' or 'gluten free' - a la Cote or Rockfish. It's not something that they are required to do by law, but that 'best practice' reiteration of the essential knowledge, gives you more confidence that hopefully the message has really got through!


4. Societal pressure 

Eating out with friends and family, or standing in a queue with other people who are are hungry, you can be horribly aware that by asking all the questions you may feel you need to ask, in order to be 100% confident about the food, you are keeping others waiting. Sometimes you get that little shuffle behind you, a sigh, a glance at a watch... Even as an adult, I hate it and feel the need to get it over and done with as quickly as possible. How much more so must many a younger person, especially when peer pressure comes into play??

Only a few months ago, The Hub's nephew (who has been known to be allergic to peanuts and sesame, since he was tiny, and fits into the 16-24 age bracket) had his first serious anaphylactic  shock. It was the archetypal teenage error. He was at a party with friends, didn't think to check what was in the dip - it was humus, which he had no idea was made with sesame. He wasn't carrying his Epipens - because never having experienced a serious attack, he'd become complacent. Fortunately, his poor mother was only minutes way, was able to get there, with his medication, in minutes, and the ambulance didn't take long to get there, either. Otherwise, he could have become another statistic.



5. Human Error 

Going back to my recent experience, I have no idea what caused the mix-up in the restaurant, it may have been multiple factors, but sometimes these things happen. You just have to hope that they notice in time to stop you taking your first bite. And this is not the first time this sort of thing has happened - although this was the first time it took the best of three, to make it right!



In Conclusion...

I think we need to be honest here. It is NOT always 'easy to ask,' but for your own safety and well being, the message we need to get across to our young people is... you simply have to be prepared to ... 

#AlwaysAsk!!

Oh and if you need an Epipen...

#AlwaysCarryTwo!!

Please note: 

This post is not an advert. I have not been paid to write this post. I am not sponsored in any way, even by advertising. I do not receive products free to review, although I have often been offered them. This is to try and maintain an unbiased approach. Any products listed in this post are here purely because they genuinely are the products we have used and enjoy consuming. They are included here merely to point people who are new to suitable products that they too may enjoy. All views expressed are my own (unless I've asked for The Hub's or Kiddo's). I try to tell is 'as-it-is'.

Related posts:

Eating Out - Mission Possible

Rockfish Totally Rocks!

Dinner with Leon

Why you won't be left feeling blue at Indigo...

Let's have some peace, love and understanding - 50 Shades of... food allergy!!

Once upon a time, I honestly had no idea you could be dairy free. I was quite blissfully unaware. That all changed when 'Baby' came along and we discovered her (Non-Ige mediated) milk allergy!

Then, to keep my little one well and thriving, I had no choice but to learn about being dairy free and to be honest, time on, I'm still learning... as it turns out there's many variations or 'shades' of being allergic to food! This post is inspired by various conversations I've had on Twitter, but which for the most part will concentrate on being dairy free.

When I say 'dairy free', I tend to mean, not just avoiding milk along with all products made with milk, but also all products that may contain milk (with the exception of one or two that seem to have proved themselves 'safe' for us) along with any that are declared not suitable for those with a milk allergy! (This is based on our experience - what 'Baby' has reacted to in the past - she was so sensitive, that as a three month old baby, she reacted to a tiny amount of dried milk powder used in the flavouring of a packet of salt and vinegar crisps that I had eaten by mistake!! In fact, 'Baby's' sensitivity caught even our pediatrician by surprise!!)

I'd like to think the whole dairy free thing could be that black and white, HOWEVER, I have discovered that other peoples' experiences of being dairy free can be rather different! It has gradually occurred to me, over time, that many who follow us via the blog/Face Book page/Twitter account may well class themselves as dairy free, but have requirements that differ somewhat from ours*! Which is why now I sometimes list products on Face Book or Twitter that are not as dairy free as I might wish - but I always try to be as clear as I can, when I do so, in order to avoid any confusion.

So...

What are these 'shades of dairy free'?

Personally, I became dairy free not because I myself am milk allergic, but in order to breastfeed my dairy free milk allergic baby. I had to eliminate all traces of dairy from my diet, in order to make her well again. There are other mums out there who do the same.

However, it turns out that not all babies with a milk allergy are the same - they have varying thresholds of tolerance - some are less sensitive to dairy than 'Baby' and some are more! Some babies with milk allergies are not found to be milk allergic whilst breastfeeding or even whilst formula fed (this is because milk proteins in formula are processed to some extent, which can make them more easily tolerated) - allergic reactions in these cases only becoming apparent once weaning begins. 

Most babies with milk allergy are fine with a hydrolysed baby formula, which contains cow's milk, with the proteins have been broken down. Other milk allergic babies require a hypoallergenic formula that contains no cow's milk whatsoever, but is made with amino acids instead.

Then, there is more than one kind of milk allergy - you might be Ige (experiencing instant reactions or reactions that take place within an hour or so) or Non-Ige (formerly labelled as cow's milk protein intolerance, it involves delayed reactions which may not even present themselves for a few days). 

Some people may take several exposures to a trace amount,of milk, before a reaction becomes evident, others may react almost instantly to the slightest trace. 

There are also those who are outgrowing their milk allergy and are gradually becoming more and more able to accept milk-based products (there are various stages to this, that I won't go into here, but it's like a gradual phasing-in, until milk can be fully tolerated) they are still milk allergic, until it is completely outgrown. 

Some may well outgrow their milk allergy, to all intents and purposes, but then (like a friend's son) still occasionally find that they might have a reaction if they 'overdo' the consumption of milk or milk containing products. 

And then there's the fact that not all allergic people respond to allergens in the same way - the symptoms can vary enormously. Some may experience a potentially fatal anaphylactic shock and require epi-pens and hospital admissions, whilst others may have incredibly bad attacks of eczema or asthma, or (like 'Baby) might experience crippling gastro-type symptoms, reflux, or rashes or... well I could go on - there are many other symptoms. 

There are also those, who, surprisingly, only react to certain dairy products - like my little sis who can't eat cheese, or my niece who can no longer drink milk or eat most cheeses without getting a stomach-ache, but can eat yogurt, ice cream and chocolate (which I must admit confuses 'Baby' somewhat to see her cousin differentiating between foods in this way)!

Then there are those who can't drink cows' milk, but seem to be fine with goat's milk (please note, I do not advocate trying goat's milk with a cow's milk allergy sufferer, as the statistics are stacked against this one, and I've heard of too many people trying this, only to come a cropper)!

There are some who may or may not be milk allergic, but believe they are as a result of unreliable or unavailable allergy testing. Whilst the gold-standard is, of course, a professional diagnosis, by an properly up-to-date allergy doctor or dietitian, coming from our own experiences,** I understand completely why some people do self-diagnose. 

There may well be some for whom apparent reactions are psychosomatic, but again proper medical advice/attention is what is required in these instances - not allergy shaming! I particularly appreciate Alex Gazzola's thoughts on this one.

Then there are also those, who, are not allergic, but, believing dairy to be less healthy have made a lifestyle choice or who are Vegan and who will not react to milk traces, so are happy to accept products that do contain traces of milk. 

There are also those who are lactose intolerant - that is they cannot digest the lactose (sugar) in milk. Many lactose intolerant people can cope with small amounts of processed dairy - some even can have small amounts of cheese - or some use enzymes to help them digest their food.

Or, some may find their IBS symptoms improve, when they follow a diet that is free from various foods, including dairy.

And there are those who feel their autistic child responds better once they've cut out dairy.

And then there are those who develop a temporary intolerance to milk - perhaps due to intestinal damage, from something such as coeliac disease or following a stomach bug.

And then there are those who, for whatever reason, just don't like dairy. I must admit, I find this last one the hardest to understand that, as I love all dairy, but I do accept that it can happen!

In fact, if I stop to think about it, although I may not have actually listed 50 shades of dairy free here, there are probably far more than 50 shades of being dairy free as there are so many variations!! By the way, I don't advocate all of the above - I am just more aware of the breadth of the dairy free community than I used to be and am trying to illustrate just how broad it can be.

Peace, love and understanding?

Small wonder, then, that there exists a certain amount of confusion about all this. It is perhaps typified by the response of some restaurateurs who grumble that people claim to have food allergies and then eat food from other peoples' plates - plates that have not been prepared with the same careful precautions that have been followed for the allergic individual. As a result, when some people hear the word 'allergy,' their ears prick up and they begin to look for a rat to smell! 

To those of you who are looking for a rat to smell, yes, I understand your skepticism, I too have heard of people saying someone is allergic, simply because they are being fussy, and just don't like cheese, but, in my experience these people are in the tiniest of minorities. 

Please understand that those of us who are genuinely dealing with milk allergy are all dealing with slightly differing circumstances. It's all about those '50 shades' - some of us may therefore NEED to take more precautions than others and for those who seemingly take less precautions it still doesn't negate the fact that they do suffer from an allergy. 

Please don't take Pure Leith's attitude, who, when discussing allergens and restaurants last week said that some people's reactions are not too serious - according to her understanding it's only a problem if it kills you. No, it's true, my little one may not die if she has milk, but that does NOT mean she won't suffer. Because her reactions are delayed, YOU are unlikely to witness them, but I will still be picking up the pieces, hours later, maybe even the next day or longer - depending on how much milk she has been exposed to and how much the milk content has been broken down by being baked or processed and also her general state of health at the time. For some people, delayed reactions can literally last days. Left unrecognized or dealt with, in the longer term, delayed reactions can cause children to become malnourished, because their guts become damaged and unable to digest food properly.   

You may not be aware of this, but a gut that has been damaged by a food allergen, is traumatized. Imagine bad eczema on someone's arm, but actually it's not on an arm, but in the gut. The difference is that damage to the gut is unseen and there is no soothing balm that you can apply to help it heal. You just have to wait. This is why when we have failed a carefully carried out food challenge (to see if our little one is beginning to outgrow her allergy) we have to wait at least three or four months before trying again - to allow the gut to completely recover.

Please ALWAYS take food allergy seriously, even if you think some of those who claim to be allergic don't - I'm sure you wouldn't want to find yourselves in the position of an American restaurant (featured in the press, just this week), who didn't take it seriously enough... tragically resulting in a teenager's death. And I hope that equally you wouldn't want those of us with less visible effects to suffer also. After all, why should we pay for a meal that would make us ill or discomforted in some way??

And to those of us with varying degrees of being dairy free, let's be honest, let's educate ourselves as best we can, let's support one another, let's keep communicating (as rationally as possible - I know it can be hard at times, when feelings are running high) with the outside world, to help them understand our needs, and...

Vive la Difference! 

* Please note: whilst I accept that this may be the case, in regards to followers, I expect food manufacturers to be as transparent as possible in describing/labelling their food to avoid unnecessary misunderstanding and allergic reactions (i.e. please do not market food as 'dairy free' if it's made in the same environment or on the same equipment as milk products - it's completely misleading for those who are extremely sensitive and who could experience a reaction, if exposed to the tiniest of traces).

** Milk/food allergies can sometimes, but not always, be picked up in specific Ige blood tests or in skin prick tests. Such tests are hugely frustrating, as they can provide false positives or negatives, so, unfortunately, a test is not necessarily conclusive. This is why milk allergy should be properly diagnosed by a trained Health Care Professional, who can investigate your history, but, sadly, appointments with the experts are not always as available as they should be - there are more people wanting appointments than can get them, hence there are those who rely on self-diagnosis or on tests which have no scientific basis. Many parents still struggle to get GP's or Health Visitors to take their concerns about food allergy seriously. We only got our diagnosis for our little one by going private. Two local GPs completely misdiagnosed our little one with other completely unrelated conditions. Also, I personally have sat in my GP's surgery and mentioned about my OAS syndrome, and my reactions to soya, only to have the GP say 'Oh!' and nothing more! I believe more training is needed for first line medical professionals, in order to help them understand, spot and know how to proceed when presented with patients with potential allergies. I am very thankful, therfore, for HCP's who get this and are working to improve their colleagues knowledge and understanding!

Further reading:

Web MD Gluten-free/Casein-free diets for Autism

What you need to know about diagnostic allergy testing

Related posts: 

100 chefs - why I'm not bovvered...

Are we really allergic?

Finding the perfect formula for the dairy free baby