Wednesday, 18 March 2015

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.


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!

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1 comment:

  1. A fantastic explanation of the huge variation in symptoms and diagnosis of food allergy sufferers. This is a subject close to my heart, as like you, I have a child with dietary needs and I also have to avoid certain foods. I am really grateful you have mentioned the variation in help received from health professionals. Some people may be suffering, unclear or confused themselves while seeking diagnosis. Lets hope that as a community of people with dietary requirements for all reasons we can all stick together to help improve the food on offer for everyone. Peace out!