#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...

Happy New Dairy Free Year!!

Happy New Year!!

This pic is a bit of a metaphor for my life, at the mo - muddled and mismatched, with bits missing!

Okay, okay, I'm a bit late I know, but Christmas was sooo busy and I needed to get the Kiddo back to school, myself back into routine, and my house back into some kind of order, before getting back to blogging again! First two achieved, ho hum on the second!

You may have noticed an absence of blog post recently, well the last three months really, and it's not because I didn't WANT to, it was simply a case of not-enough-time-in-the-day. Face Book and Twitter might have got a cheeky little look in from time to time, but certainly not to keep up with longer messages and blog posting - hence lots of posts from the archives on FB, which although perhaps helpful for newbies, not so great for those who have read them before! I've heard it said that young people only get done 1/3 of what they actually plan to do. Well I'm not so young as I was, but it's certainly true of me!


So where have I been? 

Well apart from going on holiday (post to follow), it's been loads of mundane stuff shopping, washing etc. etc. (especially following the holiday), plus birthdays, plus Christmas, plus visiting family, plus seeing friends, plus running a toddler group, plus caring for our pets, plus, plus, plus...

Our house has really suffered - not helped by a lively Kiddo, who is apparently brilliant at tidying and being helpful at school, as well as being incredibly well-organised, but at home?? Not so much!! 

I think a clear out is definitely in order!

This, despite countless boxes, drawers, cupboards etc. being provided for her storage: 

Eeek!

So how did I get into this muddle?

Last year was not a great year for many people - certainly, personally, there were some spots where I was quite poorly, which didn't help the smooth operation of our home, or anything else for that matter. It has felt like fighting an uphill battle to get my health and life back on track. So my plans/resolutions for the New Year are these:

• to clean up/reorganise my house

• to eat more fruit and veg. in the hope that my body will co-operate (I've noted that eating fresh salad every day and drinking orange juice helps)

• to get more exercise 

• to get enough sleep (bad sleeping patterns haven't helped, I think)

All these are so that I can stay healthy enough to get everything else done and be the wife/mother that I want to be.

Hmm! Not setting myself too high an expectation I hope! I don't like setting myself up to fail (note - no diets mentioned here)! 

So, apologies to those who have expected replies and had to wait for them - hopefully I'll catch up with you soon.

Moving onwards...

Meanwhile, on the plus side, 2016 brought new breakthroughs in understanding of how allergies develop and how they might, in some cases be prevented (particularly regarding the prevention of nut allergies*), as well as bringing lots of great new products our way. Some of my personal favourites, this year, were: Koko's new dairy free yogurts (see here), this great new dairy free ice cream by Alpro and these new dairy free choccies by Kinnerton - yum! 

Now, I'm really looking forward to all that this new year will bring, how about you?? What are you looking forward to this year??

Whatever your hopes/dreams/aspirations, I sincerely hope you will have a happy and healthy New Year!

* NB: For more information about the prevention of nut allergies, please see Dr Carina Venter RD's  excellent blog

What happens when your dairy free kiddo starts taking risks...???

Well I never thought I'd compare my daughter to a recovering alcoholic - well definitely not at the age of five anyway, but there you go...

It's not that she has developed a chemical dependency exactly, but she's suddenly developed a bit of a devious streak - that is rather out of character with her usually honest little self. Normally, she can't keep a secret from Mummy, but now she is also showing signs of denial and of course, it's all related to her milk allergy!

I find myself a bit bewildered, really, as I've tried to be open with her about her milk allergy and explain things as much as I can, so I thought, that for her age, she was kinda clued-up - as much as she could be - but recent events have proved me wrong!

'Mummy,' she said to me the other day, 'I had a dairy free custard cream at school today. It was nice!'

My ears pricked up a bit. 'Oh,' I said, 'really, are you sure? I've not come across any dairy free custard creams,' I said. Actually, I'd forgotten that the Lovemore Custard Creams are dairy free -also gluten free, egg free and nut free - but I always forget about them because they're made of soya flour (which I can't have) and also because they aren't that easy to get hold of (except via Holland and Barrett online, see here).

'Oh yes!' she replied airily, 'it was! And I really, really liked it!'

'Hmm!' Thought I. 'I don't think so!' Suspicious? Moi??

'How has your tummy been?' I asked. This, I thought, might help me understand a bit more about what's going on here. 

'Well,' she replied, 'I had a bit of a tummy ache, but...' she recovered herself most adroitly, 'it was because I was too hot, and I always get a tummy ache when I get too hot.'

GRRR!!! Too hot!! No!! Being too hot has never caused her a problem like this before!! 

I realise that she's on to me and lying to cover herself!! She knows I'm likely to start say the biscuit can't have been dairy free and that I'm likely to take some form of action to prevent her having one again. Having clearly enjoyed the biscuit, she's trying to head me off at the pass - 'cos although it may have caused her discomfort, as far as she's concerned, it was worth it!

This isn't the first time this kind of thing has happened - the most notable occurrence to date was the result of her having tried 'real'  pizza with 'real' cheese at school last year. Watching her friend's enjoy 'real' pizza had prompted her to ask for some. Somehow, someone in their wisdom thought that, even at the age of five, she must know what she's allowed to have (or not have) and therefore gave it to her!!

Well, theoretically, she probably did know, but chose not to - if you get my drift!

Cheese being much further up the milk ladder than a well-cooked biscuit, the resulting tummy cramps were far more severe than we've experienced in quite some while. Confusingly for me, instead of the usual diarrhea, she was constipated for several days. I suspected milk, but could prove nothing. 

The true cause only came to light because eventually kiddo complained to me, most indignantly, that someone had prevented her from having pizza for lunch... 

AGHHHH!!!!! 

Good job, she's got a Non-Ige mediated allergy and is not anaphylactic, then!!!! Even though she'd experienced crippling stomach pains (that were strong enough to cause her to cry out involuntarily and double up with pain in Waitrose) she was in denial and was desperate to have more pizza - simply because she liked the taste of it! 

This pizza's dairy free!

'Well,' you might say, 'so all that happens is she gets a tummy ache, it's not going to kill her, what's the problem?'

Thing is, the first noticeable reaction (to a small amount, processed and cooked - we're not talking a full-on uncooked milk exposure here) is the tummy ache, followed now, it seems by constipation, rather than diarrhea, BUT unchecked I've noticed (as I watched helplessly through most of last year, when school said she wasn't having dairy at school, even though I knew she must be having some somewhere) that let alone the fact that it causes extreme discomfort, her immunity drops, she looks kind of greyish, tired, washed out and starts catching every little bug that comes her way - meaning she's not on form. Basically it detracts from her well-being and constrains our movements (you can't go anywhere/do anything when she's crippled up with pain). 

Now obviously, this has all been discussed with school, and I think I've communicated with them as carefully as I can, about it all, but what I find tricky is that I'm still relying on staff who don't live with this on a daily basis - staff whose knowledge, understanding and experience of this is therefore somewhat more limited than mine. If their knowledge fails, I really can't rely on her (at the age of five) either to know the difference or even now to keep asking the right question - 'Is it dairy free?' Because now, she has begun to realise that by being dairy free she may be missing out.

DOH!!! That wasn't part of the plan! 

I've heard of allergic teenagers taking risks - due to peer pressure and the like, but a five year old?!? Not for the first time, am I hugely grateful that her Non-Ige milk allergy is non life-threatening!! If they were, I suspect I'd be withdrawing her from school!!


However, at the end of the day, the good news is that her reactions are not as strong as they used to be, so onwards and upwards! Cue a new milk challenge - she was due one anyway - well once her stomach has been given the time to recover a bit!!


Related Posts:


Is this an allergic reaction?



Living with Cow's Milk Allergy - how I try to keep the 'Dairy Free Baby' milk free!



Challenging Baby

When food challenges seem to fail...

OH!...... BOTHER!!

'Baby's' at it again... sniffling and snivelling like a good 'un!

I mean, I wouldn't mind, but this has been going on and on for months - off and on - in fact, ever since she started school! I know, I know, they catch all sorts at school, so it was bound to happen, really, but I really need to get on and do another milk challenge* with her! And they're really not advised, if your little one is not in tip top condition - they tend to have a stronger reaction, if it all goes pear-shaped! Good health being required for a milk challenge, finding a time when 'Baby' has been well enough to challenge, has become a challenge in itself!

BAH!!

Our last milk challenge was months and months ago (read about it here). It started well... but then, well events overtook -the final bit of emptying-flat-for-sale coincided with being unable to nail down the dietitian. By the time she got back in touch, we'd lapsed from our daily biscuit and suddenly, it seemed 'Baby' wasn't tolerating them any more.

Strange! 

And incredibly disheartening! It had all been going so well - we'd never got this far before. And nobody had ever mentioned the merest possibility of going backwards! Going back down the 'Milk Ladder,' that is!**

Once upon a time, you'd have hardly heard it mentioned - on Twitter, FB and the like - but now it seems that almost everyone (well, almost every allergy Tweeter) is talking about 'Food Challenges' and 'The Milk Ladder.' Partly, I think, that's because it's taking a while for research and good practice to filter through to grass roots level, as it were, and partly because there's a lot more of us allergy mums out there, who are blogging and tweeting about it now.

It's a good thing, I think - the more people share about the nuts and bolts of their experiences... well, it informs others going through the same thing, doesn't it? Particularly when getting hold of good advice can sometimes prove a challenge in itself! 

I get really excited (and envious) when I hear of children passing these challenges and moving onto the next stage of their allergy journey - hopefully progressing towards the point in time where they'll completely outgrow it. I heard of two stories like that, just the other week! One from Heddi, of Dairy Free Switzerland. You can read about it here. The other, Lisa Wadell - Specialist Peadiatric Allergy Dietitian and fellow allergy parent.

I must admit, whilst it is exciting to hear of any child succeeding in outgrowing an allergy, I get a particularly thrill when I hear of a child with milk allergy growing out of it - because that's our nemesis too! It gives me hope... that one day that will be us!

The statistics look good: MOST children outgrow their milk allergy, by the second decade, according to Dr Adam Fox - speaking at The Allergy Show.

'Baby' is convinced. 'Mummy, when I grow out of my milk allergy, can I have...?' is an oft heard refrain! Now that she mixes with other children her own age all the time, at school, she's become acutely aware of the differences, that before, did not matter... that I shielded her from, in our own little free from world. 

Around the time she started school, she declared that she would like a carton of cow's milk for Christmas. Such glorious optimism! So sadly misplaced! Instead I got her this:

Yes, it's not a real carton of milk - but the nearest I could get!

I'm afraid I'm not quite so optimistic. Remember, of all the Disney characters, I think I identify most with Eeyore? Part of me secretly worries that maybe we'll not fall into that glorious MOST, but fall by the wayside into that.... SOME! 

After all, it does happen that some don't make it, or the statistic wouldn't be there! 

I was particularly pleased to hear, therefore, of the progress of Lisa Waddell's children. Ages ago, I seem to remember her wishing me luck (via Twitter), when, once again, we embarked on a milk challenge (we've had quite a few now). From what I remember, she seemed quite despondent, as, in their circumstances, there had been no change. 

The received wisdom at that time, was that most children outgrow their milk allergy by the age of two - although I think, at the time, that was being revised upwards to about four or five. Lisa's children were a bit older than that! It wasn't looking good! However, the tables have turned, Lisa's children are now working their way up the 'Milk Ladder,' and, interestingly, it seems that, like us, they have sometimes suffered setbacks too - where things have seemed to go backwards rather than forwards! 

Huzzah! 

Maybe we're not quite so strange, then! Maybe we haven't completely slipped off the ladder, after all!

I'm also cheered by Lisa's experience, because as a Dietitian (working for Nottingham Food Allergy Service) she has to advise others on how to go about a milk challenge. Having been through the experience herself, as a parent, it seems to me, that it leaves her in a far better place to offer advice - she knows exactly what we're going through! 

You can follow her via her 'Food Allergy Nottingham Service' Face Book Page, and on Twitter (@lis_wad). She is also available for private appointments.


Meanwhile...

Apparently, it's better to go through a food allergy and fail than not attempt one at all! Recent research suggests that it leads to a better quality of life - because you've faced the worst and got through it! 

So there you go! 

Don't believe me? Read about it here!


SO the message is: if at first, second, third, etc. etc. you don't succeed, don't give up... just yet!

Glossary:

*Milk/Food Challenge - when you try to find out whether an allergic individual is still allergic to some food (in our case, it's quite obviously a Milk Challenge). 

**Milk Ladder - this is a term referring to a structured approach to reintroducing milk to an allergic individual. It begins with the individual being able to tolerate a product containing a small amount of baked milk (baked milk is most easily tolerated) and progresses through milk in various processed forms, until milk itself can be tolerated. I have seen various versions of this, but my preferred version is in twelve progressive stages. I have seen it shared quite widely (online) but have not done so, for two reasons: out of respect for the author, whose permission I do not have, and because it really ought to be followed under proper medical supervision.

Related Posts:

Challenging 'Baby'

Challenging 'Baby' - the adventure continues?

Challenging 'Baby' Again!

Dolly can't have milk...

'Dolly can't have milk,' Baby told Daddy, solemnly, this morning, as she climbed into the 'Big Bed.'

'Oh!' I said brightly, when I was informed, 'well, that's alright, she can have soya milk like you, then, can't she?'

Baby didn't respond quite as I expected - which was to agree happily. That is, she did agree but didn't look too happy about it, as she continued to discuss her dolly's options. It's given me pause for thought.

'Baby Ananbelle'

Like many little girls, Baby is the proud owner of several dollies. Usually, she just does all the normal dolly things you would expect - reenacting all the things that I have done with her - feeding, bathing, nappy changing etc. However, her favourite, Annabelle, has also been a vehicle through which she has expressed her feelings. 

Once or twice, when I have got really cross, she has picked up her dolly and cuddled her extra tenderly, as if to say, 'See Mummy, I need a cuddle too!' Or when I have refused her a treat (like chocolate) I have found her very obviously giving her doll the thing she has been refused, as if she's underlining her desire for that very thing.

Yesterday and over the weekend she has been among close relatives who have been eating things that she can't have - because they're made with milk. She's been very good about it, including when, in a pub on Sunday her Grandma ate a chocolate brownie with ice cream; sharing it with her cousin and Grandad. Grandma often shares a dessert with Grandad, when out for a meal - it makes her feel like she's not indulging too much, if it's shared.

Both Baby and her cousin had been served the same dessert, which looked rather fun - jelly topped with marshmallows, which resembled a bubbly froth. But Baby has previous experience of jelly. She doesn't like it. The marshmallows interested her for a bit... but interest waned about the same time as her cousin stopped eating hers and started helping herself to a bit of Grandma's pudding.

Baby's dessert

Chocolate, cake and ice cream (probably in that order) are three of Baby's favourite things, yet she made not a murmur as they ate it in front of her, although she did go rather quiet and stared intently at them, all the while. I felt like I was watching her die a thousand deaths. Fortunately, the manager of the restaurant saved the day, by unexpectedly offering the girls some candyfloss, which he made then and there, right in front of them!! We've never had THAT in a pub before!!

The magic of candyfloss manufacture!

The Hub and I don't usually do desserts and definitely not those that Baby can't eat - ever since a disastrous occasion when Baby was a bit younger. When others have food or treats that she can't have (like at parties or toddler groups) I've usually thought ahead and compensated in some way, with an attractive dairy free alternative. So I suppose we have shielded her, in a way, from the fact that she is different to others. 

THAT day all I had was a packet of Kelkin gluten and dairy free jaffa cakes - usually an attractive proposition, but faced with chocolate brownie and ice cream... 

As she gets older, it's becoming more and more apparent to Baby, that others are able to eat things that she can't but would rather like to eat - they look so scrummy. And usually I am the one who's apparently denying her, by saying that she can't, because it contains milk. I don't know if she feels it as badly as I think she does, but I have noticed her behaviour worsening, not actually on but rather after the occasion. 

Temper tantrums are, of course, normal in toddlers, but she has kicked off BIG time recently and normally after we have spent time with the rellies. I thought that it was because she was missing the extra attention, but now I am wondering if it's a knock-back following the food issue - especially as she saw Grandma yesterday and we had the conversation about dolly, this morning, AS WELL AS the tantrums today.

Yesterday, she ate her sandwiches quite happily, sat next to Grandma, as Grandma tucked into hers, but there was a conversation at some point about whether there was milk in Grandma's sandwich. Later on, there was the same conversation about some cake. It's almost as if the conversation with Grandma is to verify what Mummy has been saying to her about food - and things are clicking into place.

The time before it was another cousin's birthday and there was an enormous cream cake at stake - from Patisserie Valerie, no more, no less! There was an alternative for her, but... everyone else (except me, but I don't count) had the other... That evening, after we got home home she was horrendous!!!

So now I'm left wondering what to do for the best. Do I ask the rellies to politely refrain from eating this stuff in front of her? Do I continue to try to laden myself with food for every eventuality? How do I address the hurt and confusion that I think she's feeling? I've deliberately tried to be calm and matter of fact and not go into it too much (sort of never complain, never explain, although we have had a basic discussion about how the milk makes her tummy sore) up to now. And of course, I often have to go without food, for some reason or another, myself.

I would really like to hear back from people who have been through similar issues with their little ones, or who have had allergies or intolerances as a child and experienced similar situations. It would really help, to talk this one through. As although I developed some of my allergies as a child, having to forgo fresh fruit, that I'm not too bothered about, is hardly the same thing as being forced to forgo chocolate cake, now, is it??

Update: 

Found this article which help help those experiencing the same kind of difficulties, with their children.