The allergy world is waking up to articles all over the news, focusing on a report titled 'Making Sense of Allergies' released by Sense About Science today.
The report focuses on how allergies need to be accurately diagnosed, with proven scientific based testing. The risk of not doing this, can result in malnourishment in supposed allergy sufferers. Allergists, consultants and allergy charities have worked with Sense About Science to bring the report together.
Bogus home testing kits are being blamed as the root cause of the issue, as they have no scientific basis.
The supposed outcomes from these kits are resulting in major food groups being cut out of diets, causing the serious issue of malnutrition.
ITV's 'Good Morning Britain', The Guardian, and The Telegraph are the key articles doing the rounds this morning, with the article from The Telegraph seeming to ruffle the most feathers within the allergy world.
The tone of the article suggests that allergies are nowhere near as prevalent as believed, due to:
'40% of people claim to have a food allergy, only 5% actually do'
and follows swiftly with:
'Cutting out entire food groups because of needless concerns about allergies'
This has understandably caused a fairly substantial wave of anger for true allergy sufferers.
In just a few short hours I have received numerous emails and texts asking what my views are, and whether it is a 'fair' representation.
Any allergy parent will tell you that concerns about allergies are most certainly not 'needless'. Watching your little ones suffer a reaction is the hardest thing to witness. Hives, wheezing, vomiting, extreme diarrhoea, eczema are all symptoms of a reaction, and not to be taken lightly. Add the struggle to breathe if entering anaphylaxis territory and it becomes terrifying.
The Guardian on the other hand has got a much more balanced and fairer handle of the situation:
'It's probably the biggest mess for science communication, where myths, misinterpreted studies and quackery collide with under-and over - diagnosis. The costs are huge - unnecessary actions for some and not enough action for those whose lives depend on it' (Tracey Brown, Director of Sense About Science)
although their comment of:
'A child who can't eat wheat or drink milk can't go to parties'
is totally inaccurate! Why on earth would true allergies to wheat and dairy result in being unable to attend parties? If sensible, and you plan ahead, of course a child can still attend parties, as I describe how to achieve successfully here!
The article also mentions how eating out has become much more difficult. Chefs find it much harder to cater easily for allergy sufferers due to the fact that many people claim to have an allergy, when actually it is a life style choice.
This was a very hot topic a couple of months ago with the 'Top 100 chefs'. Living first hand with allergies, I can see both sides. It's not easy for restaurants to cater for allergies, but training and understanding helps enormously. Equally, it's not easy to eat out without worrying where the next reaction will come from.
Fuel has been added to the already raging allergy fire following the comments made by Dr Hilary Jones during Good Morning Britain:
'Don't assume that your symptoms are due to allergy or intolerance. You can go and talk to your doctor, and if there is a clinical reason, have a blood test on the NHS. Don't restrict or withdraw all kinds of food groups'
Oh dear, if only it was that easy!
The NHS will not give blood tests just by asking, believe me, I tried for 16 months before I was able to get them done for Callum.
As to restricting/ withdrawing food groups - when you first see your doctor and query allergies/ intolerance, the first thing you are asked to do is keep a food diary. If a pattern starts to show, you are then asked to remove from your diet. At no point is a blood test agreed to - nor any allergy testing!
Unfortunately, this whole sorry situation is most likely due to the lack of understanding, and also sadly budget, within the NHS.
It is the result of desperate parents, who are battling to get listened to! They describe their children's symptoms, to no avail, attending doctor appointment after doctor appointment, presenting in secondary care (often as an emergency) and still don't get anywhere.
Groupon regularly advertise 'food intolerance testing' at a supposed massive reduction. If a desperate parent, sleep deprived, and worried beyond belief for their little one, the chances are they will resort to anything to find some sort of solution!
The key to turning all of this around, as I have said many many times before, is to provide the NHS with the tools to fix this situation.
They need to have a bigger budget so that correct, accurate and scientifically proven testing can take place. The doctors, consultants, dieticians, nutritionists, health visitors all need to have extra training provided to them so that they recognise the symptoms associated with allergies.
I applaud the release of this report from Sense About Science. It is much needed, and gives a true depiction of what is happening within the allergy world.
I really hope that the situation can now be improved, and that the NHS gets the support it needs to support the allergy world where it needs it most!
Some of the larger supermarket outlets or health food shops will sometimes stock the specialist chocolates such as Kinnerton, Plamil or Moo Free. However, I have found it increasingly difficult to source, particularly over the past few weeks.
I’ve been trying to find an alternative that doesn’t cost the earth so that Callum doesn’t miss out, and came across a wonderful company a couple of weeks ago, on twitter!
Things at Intolerant Gourmand HQ have been pretty hectic over the past few weeks! Illness, reactions, work deadlines - are all part of the norm!
BUT, Callum has also been busy in his own right!
No, I'm not sending my 3 year old out to work, honest gov!
A few weeks ago, Callum and I arranged to meet with Mel (from Le Coin de Mel), a fellow blogger and 3 of her 4 children. One of the many things we have in common is allergic children, and through the allergy and blogging worlds we’ve got to know each other well.
We also both support Allergy UK in their quest to improve the allergy situation in the UK.
Mel and I are going to be hosting competitions on our blogs to raise as much awareness as possible for Allergy UK, with you lovely lot benefiting with a lovely prize!
Yesterday, we had a lovely family day! We watched Wycombe Wonderers fight tooth and nail to win their match at Wembley - they really deserved to win!!
We then went out for dinner to Pizza Express, a firm favourite of ours as they are so clued up when it comes to allergies!
Sadly, our night out was cut short as Callum started to have a big reaction to a virus.
Yep, a virus!
It totally wiped him out in under 2hrs!
He was in extreme pain, his stomach was giving him crippling cramps, his temperature shot up to 39.2, and he became sluggish and difficult to wake up.
The picture shows him slumped in my arms just 40 minutes after symptoms started.
I ended up leaving the family behind, while I got him checked over by the Out of Hours team at the local community hospital.
As always, they were truly fab with him!
Normally, in a bright, loud waiting room, a 3 yr old would be causing havoc!
Not this time!
Nope, Callum was alternating between falling into an exhausted uncomfortable sleep, waking up screaming 'ow' and then falling asleep again/passing out!
Bloody horrible to witness!
The consultant who checked him over diagnosed a nasty virus, which he was reacting to.
It was also causing his lymph glands to swell, which was the reason for his pain!
The two in his tummy had swelled to the size of lemons, the 2 in his groin had become the size of golf balls. And a similar thing was happening in his arm pits, under his chin, and behind his ears!
All of this because of a bloody virus!
The poor kid!
I can't protect him from a virus like I can ingredients/ products!
This weekend saw the Allergy UK annual conference take place. It was a chance for parents, carers and sufferers of allergies to come together, meet professionals in the allergy arena, and seek invaluable support and advice.
It didn’t disappoint!!
The day started with an introduction from Professor Peter Howarth, who explained the background of Allergy UK, and their dedication to supporting the 20 million people in the UK alone who suffer with at least one allergy.
He explained that allergies/ allergic reactions are now being reported to affect almost all areas of the body, and traditionally, more than one site of the body often reacting. Allergy UK are working hard to try to promote ongoing improved understanding.
The message given to the audience was that all feedback is welcomed so that Allergy UK can continue to improve the allergy situation in the UK, and tailor it according to need.
Lindsey McManus then took over, and provided details on the current and future projects that Allergy UK are working on.
It was wonderful to hear of the important work, often behind the scenes, that Allergy UK are doing with their partners, and the anticipation felt by the attendees was palpable.
A fantastic presentation on ‘The Allergic March’ then followed with Dr Helen Brough, who totally captured the audience with her insight into the increase of allergic conditions, and the growing understanding of the relationship between eczema, food allergy and asthma.
It is understood that allergies affect more than 5% of children in the UK, and the rate of eczema is rising in line with this.
In addition, asthma is now one of the most common long term conditions.
Through increased understanding, it is known that food allergy exacerbates eczema, and eczema can cause food allergy. On top of this, food allergy, especially multiple food allergies is associated with an increased risk of asthma. And the more food allergies, the more likely the child will have asthma.
Dr Helen Brough then went on to explain about peanut allergy – which all attendees found extremely interesting following the recent fascinating LEAP study results that were released earlier on this year.
If children are exposed to high peanut dust content in the air at home, it is now known to have a high chance of a peanut allergy being present beyond 6-12 months of age. If a child has eczema as well, there is a much higher risk of a confirmed peanut allergy.
33-81% of children with moderate to severe eczema have immediate food allergies. It is understood that children with eczema may become allergic to food through the skin, and confirms the importance of maintaining good skin care and controlling the eczema successfully for these children.
An important point to note, especially for the NHS, is that of the cohort of susceptible children used in a recent study, allergic rhinitis increases asthma severity risk, to the point where there is a potential 3-fold risk of frequent wheezing attacks, and a 10 fold risk of frequent GP visits.
Crucially, if correct treatment of rhinitis is provided, there is a lower risk of asthma related A&E attendances, and therefore less hospitalisation. In the details provided by Dr Helen Brough, 47% of patients did not have an asthma related event, which reduced hospitalisation by 61%!!
This completely reinforces my ongoing beliefs that HCP’s require more training and better understanding of the true implications that eczema, asthma and most importantly allergies bring. As well as looking at the full picture and gaining a true medical history to build an accurate picture of the patient in front of them.
It was a truly fascinating start to what turned out to be a highly informative day!
Allergy support groups are beginning to pop up all over the place now, which is truly wonderful to see. Just a few years ago, things were very different, and it was even more of a struggle than it is now to gain important support through the long and difficult allergy journey we all experience when first exposed, often quite brutally, to the allergy world.
A key leader in this is Allergy UK!
Not only do they provide a wealth of information on their website, and provide support and guidance to allergy business such as ourselves, they also continually strive to achieve more and more support for allergy sufferers and their families, the ones who truly need support the most.
Last year, they hosted their very first annual conference, which was an outstanding success!
They are due to host their 2nd annual conference this weekend at St Thomas’ Hospital, in London. It is a ticketed event, which not surprisingly, has been fully booked for some time!
For anyone living with the challenges that allergies bring, be it a parent of a sufferer, or indeed a sufferer themselves, it provides a fantastic opportunity to talk to the experts, gain valuable information and seek comfort from others in the same situation.
Key speakers such as Professor Peter Howarth, Dr Carsten Flohr, Dr Isabel Skypala will be providing an insight into their work with allergies, and how allergy sufferers can work to improve their situation. They will be on hand for delegates to learn about the signs, symptoms and often complex nature of allergies, as well as impart the techniques they use with patients to manage allergies better.
There will also be interactive, practical workshops to gain further knowledge, and network with other sufferers.
It sounds fantastic doesn’t it!
Speakers who are leaders in the field of allergies, providing top tips and tricks of how to successfully manage and live with allergies, and then the chance to meet other people in the same situation as you, so you don’t feel as if you are alone in this difficult allergy journey.
A very productive and positive day for sure!
I am very fortunate to be attending, and will be writing a review after the event on my findings, which I will share here as soon as possible.
I’m really looking forward to this conference, as for me, it provides hope for the families struggling on a daily basis, and it offers them the opportunity to speak directly to the people who could really help them, where perhaps previously they have struggled to reach the support and guidance they so desperately seek!
It also shines some much needed light into what can be a dark desperate time, and to know that you are not alone on the journey, can sometimes be half the battle won!
Well done Allergy UK, and thank you for all that you do to support the people who need it most!
Last week was all about working hard to raise awareness of allergies! And boy did we do our best! ITV’s This Morning came for lunch, we wrote an article based on the facts released by Allergy UK on the shocking new statistics surrounding allergies, and then we also were interviewed on BBC 3 Counties Radio breakfast show at the weekend to describe what life is like with severe allergies and how we have learned to live with them fairly successfully. There were also other projects going on which we will give more details on soon!
This week, the realities of allergies have hit with a bang. It’s probably a combination of bringing up the whole journey of what we’ve been through, which is bloody tough at the best of times, and fighting the daily battle we go through!
Actually, scrap that, this week has broken my heart all over again in a number of ways!
The pollen level has been pretty high, which has meant that Callum has been really suffering. Not just with sneezing, coughing and runny nose, but also with his eczema.
My god, the eczema, it’s been awful!
Itchy, sore, hot, weeping….. you name it, the poor kid has had it over the past few days. And it’s had him up in the night in some severe discomfort.
Apart from his multitude of meds, there’s not much more I can do to help him, except ride out the storm.
It really hit home again this afternoon!
Chloe goes to swimming lessons, and Callum was there with me today.
He’s been complaining all afternoon about how itchy and sore his wrists have been.
Now, when you suffer with eczema, a stuffy, humid swimming pool is the last place you want to be. It aggravates the skin beyond belief and causes the eczema to feel worse than it is.
We were sat talking with a friend, when Callum decided to play hide and seek under the chairs. After a minute or two, I noticed he’d gone very quiet.
He was under the chair, itching his sore, eczema encrusted wrist against the carpet in a desperate plight to find some relief.
It of course made the situation much worse.
Cue blood, and lots of it.
I tried to stem the flow with tissue, but of course, with the damage done to the skin, there’s not a lot you can do!
Eventually the bleeding subsided, but then came the extreme itchy sensation as the skin tries to dry the blood.
It was at this point that Callum became very aware of the other people around him, particularly other small children like himself.
He desperately started to try and pull down his t-shirt sleeves, and then said:
‘Mummy I don’t want anyone to see, I don’t like it’
It was all I could do not to sob my heart out, and I’m not ashamed to admit that I did struggle a fair bit to get some control!
My poor precious boy.
He’s only 3 years old, he shouldn’t be having to worry about peer pressure, and the concern of how other people will react around him.
Sadly, because he’s witnessed so many people react badly around him, inquisitive and ill-informed people whilst out shopping or at baby groups mainly, he’s become acutely aware of how people react to someone who doesn’t always look ‘normal’.
I can only protect him for so long. Soon he will be going to school, and will have to face this on a daily basis, and I can’t begin to tell you how much this breaks my heart!
I just hope and pray that people will be kind and not judge, and maybe ask him what he suffers with, and provide him with the empathy and awareness that he and so many others deserve!
It seems quite fitting that Callum has had an allergy review with his consultant during Allergy Awareness Week! Due to the severity of Callum’s allergies, he is seen at least once every 4 months to ensure he remains stable, or at least as stable as he can be given his situation.
Callum’s consultant always does a very thorough review, especially as Callum has to follow such a restricted diet – we need to ensure his bloods are always at the right levels, and that he is sustaining calcium and vitamin levels sufficiently.
This review went quite well. It was a follow on from September, when Callum had repeat SPT and RAST testing done. The exclusion diet has meant that Callum appears healthier, and his skin, whilst still trying to remove stubborn eczema patches, is on the whole the best it has ever been, and is relatively clear currently.
There are some lymph glands that have been raised continuously for the past 6 months, which are being closely watched, and may require a blood test in the not too distant future to check all is as it should be. But, for now, the consultant is happy to watch and wait.
The best result of the review, Callum has finally started to put more weight on, and has even grown 1cm! It may not seem like much, but to us, it’s a sign that we’re doing something right, that his body is happier, and that we are beginning to win the battle against his allergies.
The journey is by no means over though, and we still have a very long way to go to continue to keep him safe and well.
I am fully aware of how fortunate we are to have this level of care, and know how ridiculously hard it is for others in the country to get this.
It’s not always been like this for us, and that’s why I am truly grateful things finally changed for Callum for the better. When his journey started, we battled for 16 months to get listened to before finally being referred to his consultant.
16 months of at least weekly attendances to hospital, including emergency admittances, or to eczema clinic, to be fobbed off with:
‘oh it’s just baby eczema, it will get better eventually’
When you’re a mum, desperately worried about your precious little bundle, watching their skin get worse and worse, battling infection after infection, witnessing extreme allergic reactions including struggling to breathe, and not knowing how to make it better, it’s quite literally soul destroying!
It really is!
And the fear, the fear of not seeing any light at the end of the tunnel, and wondering if this is how it will always be!
That’s why Allergy Awareness Week is so important, not just for allergy sufferers, but also for the medical profession.
It reminds them that allergies need to be taken seriously!
It makes them aware that many more people are now suffering with allergies, and need the right diagnosis to help them!
It shows the severity of the situation, and the burden that is now being placed on secondary care as more and more people resort to hospital admissions to seek help, often in an emergency!
An allergy review can be interpreted in many ways:
This week has the power to do all of the above, a chance to bring allergies right up to the top of the list of things to do, and to educate on what to be aware of.
It’s a chance to make a real change!