I'll put it out there - I get uncomfortable when I read articles that are just one long rant, but today...
I need to get something off my chest, before someone else suffers me chuntering on at them (sorry Pippa). I might regret writing this article; I might be proved wrong on several points; I may lose people who have hitherto supported me, but so be it! I need to let it out.
I need to get something off my chest, before someone else suffers me chuntering on at them (sorry Pippa). I might regret writing this article; I might be proved wrong on several points; I may lose people who have hitherto supported me, but so be it! I need to let it out.
The thing is this:
Quite frankly I'm fed up with reading articles along the lines of this one that I read in the Telegraph, the other day. They rattle my cage!!
Quite frankly I'm fed up with reading articles along the lines of this one that I read in the Telegraph, the other day. They rattle my cage!!
I've read similar articles in other papers, magazines etc. Mostly regurgitated clap trap, as far as I'm concerned - spewed out by journalists who seem (from my point of view) desperate for attention and who know little or nothing about the world of allergy and intolerance sufferers. A lot of the people who comment on these articles, seem to lap it up and come out with pat little phrases, like, 'Most 'allergy sufferers' are attention seekers and hypochondriacs!' What I want to say to them, is this, "Please stop saying these things. I've had enough! Just wait... until you've 'walk(ed) a mile in my shoes.'"
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| Walk a mile in my shoes... or Baby's! |
To begin with, it's not helpful to those who 'truly' suffer an allergy/intolerance (yes, I know there is a difference between the two, but I'm not splitting hairs on this one) who get 'tarred with the same brush' and treated with prejudice and suspicion. Secondly, this kind of comment creates an atmosphere of distrust and suspicion among fellow 'sufferers' along the lines of wink murder - 'I know I'm OK... so, in that case, who among us, is the culprit?'
Personally, I think that allergy sufferers should be standing together on this - not slinging rocks at each other! Here's my take on it:
I hate the assumption that unless you are anaphylactic, or have been proven by some kind of medical test, (I don't believe in 'quack' testing, by the way) that you are somehow 'faking it.'
For one thing allergies and intolerance (like conditions such as autism) are on a scale. Anaphylaxis is just one form of allergic reaction. It is an extremely dramatic, traumatic and potentially life threatening one, but not the 'be all and end all' of allergic reaction. There are other forms of allergic reaction and they can vary in severity. One person's reaction to a substance might appear more severe than another's. This can change without warning by the way - a previously mild reaction can be followed by a much more severe and frightening reaction, right out of the blue.
Some people only need a little bit of a substance to provoke an extreme reaction, others may need almost an overdose. So, my Uncle, who has a problem with egg, is fine with one here and there. But, should he overstep the mark, then digestive problems follow not long after.
Furthermore, it is acknowledged by allergy experts that sensitivities do not always show themselves under testing. I am an example of this. In my twenties, following unusual flushing on my cheeks, I was tested with skin pricks for some common allergens. The only allergy that was 'proven' was nickel - something I had never even considered a problem. Hay fever, oral allergy syndrome, skin sensitivity to various chemicals, problems with baked beans - none of these was identified, yet I had suffered with them for years!!
For one thing allergies and intolerance (like conditions such as autism) are on a scale. Anaphylaxis is just one form of allergic reaction. It is an extremely dramatic, traumatic and potentially life threatening one, but not the 'be all and end all' of allergic reaction. There are other forms of allergic reaction and they can vary in severity. One person's reaction to a substance might appear more severe than another's. This can change without warning by the way - a previously mild reaction can be followed by a much more severe and frightening reaction, right out of the blue.
Some people only need a little bit of a substance to provoke an extreme reaction, others may need almost an overdose. So, my Uncle, who has a problem with egg, is fine with one here and there. But, should he overstep the mark, then digestive problems follow not long after.
Furthermore, it is acknowledged by allergy experts that sensitivities do not always show themselves under testing. I am an example of this. In my twenties, following unusual flushing on my cheeks, I was tested with skin pricks for some common allergens. The only allergy that was 'proven' was nickel - something I had never even considered a problem. Hay fever, oral allergy syndrome, skin sensitivity to various chemicals, problems with baked beans - none of these was identified, yet I had suffered with them for years!!
More recently, following a bout of headaches, stomach cramps, chronic diarrhoea, and a fair amount of weight loss (astonishing considering the amount I was eating - I was constantly hungry as my food was passing through me so quickly) I was tested for coeliac disease. No trace was found. Yet, cutting wheat/gluten out of my diet (at my Doctor's suggestion, I was reluctant) has undoubtedly made a difference to my digestive system.
Other foods have followed, in an attempt to further 'normalise' my system. I was told that I might be intolerant temporarily (my most recent problems occurred following a tummy bug) or maybe permanently. I know of others with similar stories - people who have developed problems with food, following a bout of gastroenteritis.
In case you think, 'Aha! But it's all in the mind!' No, it's not! I wasn't looking for this diagnosis, and actually there have been occasions since when I have unwittingly eaten foods made with wheat, and suffered the consequences. Most notable of which was when my mother-in-law made a cake for my daughter's first birthday. As she had previously made the same cake with rice flour, I had no reason to doubt that it had been made any differently - until I had eaten it and I felt the resulting discomfort in my gut.
When my MIL showed me the bag of flour, that she had used, I could see for myself what the cause of the problem had been - she had mistaken self-raising flour from her Chinese supermarket as gluten free (The Hub doesn't think she 'gets it'). I don't blame her. My own mother, who attended the very appointment at which Baby was diagnosed, still doesn't 'get it'. I've lost count of the times she's asked, 'Can she not have some yoghurt, then?'
Also, I dispute the veracity of the statement that only '1 or 2 percent of people in Britain have a genuine food allergy' e.g. most 'so-called' allergy sufferers are wrongly self-diagnosing - how have they come by the figure for this? Well apparently the study that came to this conclusion is sponsored by none other than the... wait for it... Flour Advisory Board!! Now there's a surprise!! Of course, they have everything to lose by people becoming intolerant to wheat. My thanks goes to Michelle Kazukaitus for that piece of information!*
I would suggest that actually their figures, regarding food allergies, are out. I believe that there are far more people quietly living with fairly 'mild' allergies who haven't ever seen a doctor with their problem because they don't see it as a serious enough issue. Hay fever, for example (OK not a food allergy, but still an allergy) is very common. It is not severe in most cases, so people simply manage it for themselves, by obtaining over-the-counter remedies.
My doctor hasn't a clue about some of my allergies, because I have never mentioned them - I've just managed them. I didn't think that they might be of interest! As an example of this, I have only just discovered that the itchiness and tingling that I've had in my mouth (since I was a teenager) following the consumption of some raw fruit, vegetables and nuts was something called 'Oral Allergy Syndrome.' When I had reactions to these foods, I didn't rush off to my doctor and demand testing to prove it, I simply avoided them - even when I had what I now know must have been a fairly severe reaction to a piece of raw green pepper! It's still not included on my medical notes. After all, what can he do about it, except tell me to avoid these foods?
Another reason I feel that the true figures of allergy sufferers may well be inaccurate is that some people might not consult their GPs enough, due to past bad experiences. Maybe this is because, like me, they have lost trust in doctors, perhaps because they feel they have not listened to; or have not been taken seriously enough; or because they have been incorrectly diagnosed in the past.
We saw two local GPs, who both misdiagnosed our daughter when she was suffering quite severely from an allergy to cow's milk protein. What they actually came up with beggars belief, in the light of what we now know. She was only diagnosed because we decided to 'go private' about a completely separate issue (the treatment of her tongue tie). The paediatric consultant that we saw (who works part time for the NHS, by the way) recognised and correctly diagnosed her symptoms almost straight away!!
To back this point up, I have heard an eminent professor (who has worked in the field of allergies for many years) say fairly recently (a few months ago) on The One Show, that many GPs are not as au fait with allergies, as perhaps one might like. So again, I would suggest that this is another reason why many cases may be going 'under the radar'.
I am not against doctors and medical professionals, by the way. There are many who are quite simply brilliant. We need them, but we also need those who are not yet so understanding of allergies/intolerances to be brought up to speed - and quickly! We could have waited months for a correct diagnosis if we hadn't gone private, and every day that we waited for it was pure agony for me - as I watched my baby suffer. And suffer she did!
Finally, (well almost) at the end of the day, suffering is (by its very nature) an inexact and subjective experience. Who knows the extent of an individual's suffering, but the sufferer themselves? A friend of mine had absolutely no pain when she gave birth to her son, but I was practically leaping off the bed in agony.
One thing is verifiable, however, and that is that experts who work in the field of allergies have noted a considerable increase in the number of cases that they have been treating in just the last ten years. And scarily so! There must be a reason for that, which is, as yet, awaiting discovery.
The implication of that rising trend, however, is that should it continue upward, then eventually, at some stage, we might all be living with allergies of one kind or another - including those ill-informed and prejudiced people who accuse others of not really being allergic. Then such people might, 'Walk a mile in my shoes.' Now there's a thought!!
Other foods have followed, in an attempt to further 'normalise' my system. I was told that I might be intolerant temporarily (my most recent problems occurred following a tummy bug) or maybe permanently. I know of others with similar stories - people who have developed problems with food, following a bout of gastroenteritis.
In case you think, 'Aha! But it's all in the mind!' No, it's not! I wasn't looking for this diagnosis, and actually there have been occasions since when I have unwittingly eaten foods made with wheat, and suffered the consequences. Most notable of which was when my mother-in-law made a cake for my daughter's first birthday. As she had previously made the same cake with rice flour, I had no reason to doubt that it had been made any differently - until I had eaten it and I felt the resulting discomfort in my gut.
When my MIL showed me the bag of flour, that she had used, I could see for myself what the cause of the problem had been - she had mistaken self-raising flour from her Chinese supermarket as gluten free (The Hub doesn't think she 'gets it'). I don't blame her. My own mother, who attended the very appointment at which Baby was diagnosed, still doesn't 'get it'. I've lost count of the times she's asked, 'Can she not have some yoghurt, then?'
Also, I dispute the veracity of the statement that only '1 or 2 percent of people in Britain have a genuine food allergy' e.g. most 'so-called' allergy sufferers are wrongly self-diagnosing - how have they come by the figure for this? Well apparently the study that came to this conclusion is sponsored by none other than the... wait for it... Flour Advisory Board!! Now there's a surprise!! Of course, they have everything to lose by people becoming intolerant to wheat. My thanks goes to Michelle Kazukaitus for that piece of information!*
I would suggest that actually their figures, regarding food allergies, are out. I believe that there are far more people quietly living with fairly 'mild' allergies who haven't ever seen a doctor with their problem because they don't see it as a serious enough issue. Hay fever, for example (OK not a food allergy, but still an allergy) is very common. It is not severe in most cases, so people simply manage it for themselves, by obtaining over-the-counter remedies.
My doctor hasn't a clue about some of my allergies, because I have never mentioned them - I've just managed them. I didn't think that they might be of interest! As an example of this, I have only just discovered that the itchiness and tingling that I've had in my mouth (since I was a teenager) following the consumption of some raw fruit, vegetables and nuts was something called 'Oral Allergy Syndrome.' When I had reactions to these foods, I didn't rush off to my doctor and demand testing to prove it, I simply avoided them - even when I had what I now know must have been a fairly severe reaction to a piece of raw green pepper! It's still not included on my medical notes. After all, what can he do about it, except tell me to avoid these foods?
Another reason I feel that the true figures of allergy sufferers may well be inaccurate is that some people might not consult their GPs enough, due to past bad experiences. Maybe this is because, like me, they have lost trust in doctors, perhaps because they feel they have not listened to; or have not been taken seriously enough; or because they have been incorrectly diagnosed in the past.
We saw two local GPs, who both misdiagnosed our daughter when she was suffering quite severely from an allergy to cow's milk protein. What they actually came up with beggars belief, in the light of what we now know. She was only diagnosed because we decided to 'go private' about a completely separate issue (the treatment of her tongue tie). The paediatric consultant that we saw (who works part time for the NHS, by the way) recognised and correctly diagnosed her symptoms almost straight away!!
To back this point up, I have heard an eminent professor (who has worked in the field of allergies for many years) say fairly recently (a few months ago) on The One Show, that many GPs are not as au fait with allergies, as perhaps one might like. So again, I would suggest that this is another reason why many cases may be going 'under the radar'.
I am not against doctors and medical professionals, by the way. There are many who are quite simply brilliant. We need them, but we also need those who are not yet so understanding of allergies/intolerances to be brought up to speed - and quickly! We could have waited months for a correct diagnosis if we hadn't gone private, and every day that we waited for it was pure agony for me - as I watched my baby suffer. And suffer she did!
Finally, (well almost) at the end of the day, suffering is (by its very nature) an inexact and subjective experience. Who knows the extent of an individual's suffering, but the sufferer themselves? A friend of mine had absolutely no pain when she gave birth to her son, but I was practically leaping off the bed in agony.
One thing is verifiable, however, and that is that experts who work in the field of allergies have noted a considerable increase in the number of cases that they have been treating in just the last ten years. And scarily so! There must be a reason for that, which is, as yet, awaiting discovery.
The implication of that rising trend, however, is that should it continue upward, then eventually, at some stage, we might all be living with allergies of one kind or another - including those ill-informed and prejudiced people who accuse others of not really being allergic. Then such people might, 'Walk a mile in my shoes.' Now there's a thought!!
In addendum: suffering from allergies/intolerance isn't fun - I'm missing out on some of my favourite foods, such as cashews and kiwi fruit. It's not an attention seeking ploy. It's not faddy. It's expensive. Not only does it drain one financially, it also drains one of time, energy, spontaneity and emotionally etc. etc. Quite frankly I can think of better ways of spending my time and money - if only I could! But, I believe that, 'Where there's life, there's hope.' So, roll on the day we find a cure!
Sorry! Rant over!
Oh, by the way, someone with sense has now commented at the end of the Telegraph's article. If you read through some of the readers comments, at the bottom of the page, Michelle Kazukaitus seems to agree with me on this one. If you like what she says, please 'recommend' her excellent comments on this issue!
*Further thoughts on these figures and related matters, can be found on the blog Food Allergy and Intolerance which is written by Alex Gazzola - a journalist who specializes writing about such issues.
Sorry! Rant over!
Oh, by the way, someone with sense has now commented at the end of the Telegraph's article. If you read through some of the readers comments, at the bottom of the page, Michelle Kazukaitus seems to agree with me on this one. If you like what she says, please 'recommend' her excellent comments on this issue!
*Further thoughts on these figures and related matters, can be found on the blog Food Allergy and Intolerance which is written by Alex Gazzola - a journalist who specializes writing about such issues.
I get angry at these stories, that we are all fakers and I know there will always be a small proportion of people who are on fad diets. As a small child my allergies were unheard of then they time went on allergies there was more awareness and now I am regarded as a fraud???? Makes me mad. I had a skin prick test at a young age but my current GP is rather clueless I have mention growing concerns but she says as long as my throat doesn't swell up don't be too concerned, so I now self manage the situation, I have enough years of experience to understand my body. Great article post & thanks for ranting about this one, we do all need to stick together
ReplyDeleteThanks Sugarpuffish. You've been very supportive. Have you considered asking your Doctor for a referral? I believe it is possible and might prove useful, if your Doctor is unhelpful.
DeleteWe had a similar problem with getting our baby's dairy intolerance diagnosed. The GP didn't want to know as he wasn't displaying classic allergy symptoms. I wanted to ask the doctor if she would be prepared to witness every feed and deal with with the resulting effects, i.e. a very unhappy baby with stomach cramps.
ReplyDeleteIn the end my health visitor referred us to a dietician, who recommended a two week dairy free trial. We've never looked back. Turns out soy is a problem too, as is egg and banana.
It's so hard, to see your baby suffer, isn't it? I worry that some Doctors see a new mum and write her off as anxious, without listening properly and 'joining up the dots'. I'm glad you got there eventually though. Tough for you that there is more than one allergy. Did you see my previous post? Do you have to completely avoid soy?
DeleteReally readable and entertaining rant. I agree with a lot of it. Definitely think food allergy rates are higher than 1-2% (OAS accounts for more than that on its own). The Flour Advisory Bureau report, from which a lot of quoted figures still emerge, is one which I loathed too - and in fact was what got me blogging on the subject.
ReplyDeleteI could write on this all day, but will reign myself in. I think the distinction between allergy and intolerance is not well understood and has been lost. Both terms are widely abused. Worse, in some respects - medical bodies don't even always agree on distinctions between them. I think this does have an impact on the issues.
I do think self-diagnosis (or diagnosis from some alternative therapists) can be a problem. Yes, a lot of people can get it right. But a lot can get it wrong. I've interviewed enough dietitians to know too that psychological / somatised reactions to food are very real: unpicking this is very hard, and I suspect a lot of people are restricting diets when they don't really need to. I don't think this should be swept under the carpet.
I'll add this: I think those with psychological responses / problems to food are just as deserving of understanding, treatment and respect etc as those with enzymatic or immunological problems with food. I hope to blog on this very subject soon.
Alex Gazzola
Thanks Alex! Your comments are thoughtful and much appreciated. A lot more research is definitely needed to get to the bottom of all these issues! I'll have to look out for your blog, I'd be really interested to read it!
DeleteI feel you. My dear brother, who is a family doctor, and a close friend, who is a dermatologist, both suggested that my husband was not really gluten sensitive and that it might be psychological prior to asking questions about symptoms. I thought that was the wrong order for the conversation to follow. And then even after I volunteered the symptoms (since they did not ask) and family history of several medically diagnosed celiac close relatives, they were still skeptical without him having a test to confirm it. Thankfully, his own doctors were somewhat better, and tentatively diagnosed him as gluten intolerant.
ReplyDeleteAnd our pediatrician, who we picked after discovering that he has family members with celiac, has taken our word as golden when we relate that our baby has solid poop when he doesn't eat dairy and does not when he gets dairy. End of story. Baby is dairy intolerant. No fuss, no muss. And we are so grateful!
The rest of the world is not so easily convinced, as evidenced by the numerous repeated conversations with his daycare teacher who proclaims to have celiac in her family (she seems to remain a skeptic). She wonders how we are certain that baby cannot have dairy in any form, "not even butter?", and seems to forget our prior conversations every few weeks.
When I was ten, I was skeptical that people could be allergic to the sun. I now know that it is true. I have to remind myself that ignorance precedes knowledge in all cases.
Indeed! Your last comment is very mature and insightful! I was the other side of the fence too at one time, so I can understand why people say those things, but I still wish that there was much more understanding out there, especially from those in the medical profession! Your whole story echoes things I hear from others with food allergies/intolerances all the time. So frustrating!
DeleteAs a follow up a few years later... my brother doctor helped us so much last year because he was the one who, in his wisdom, suggested keeping a food diary, which lead to our discovery of several other food intolerances which we were able to see repeatable reactions to. Thanks be to knowledge, to caring and loving brothers, and to all our accommodating family!
DeleteThis reminds me of the time when a family member gave our son a tiny bit of ice cream (before we could intervene) and he was instantly sick all over her! She knew all about his allergies but still didn't really believe, thought she'd test herself I suppose, eek! All the family are onside now though : ) But I often get people asking me if my son has ever tried cooked egg - I bite my tongue every time - what I want to say is "NO, try russian roulette with your own child!" but I'm unfailing polite, up to now!
ReplyDeleteYeah! The times I've had to bite my lip! Dealing with family members and well-meaning friends who either don't believe you, don't think about what they're doing, or try to suggest 'cures', is always an interesting one!! Unfortunately it's the ones who depend on others to care for them (like your son) who end up suffering :(
DeleteThe allergist my little girl sees has told us that he feels intolerance is an outdated term and describes what she has as a non-IgE (delayed) allergy, and that any reaction to a protein in food -delayed or otherwise - should be called an allergy, leaving intolerance as a description for things like lactose intolerance. I have to say I feel much more confident telling people that she has an allergy rather than intolerance as I feel they are more likely to take it seriously.
ReplyDeleteBut I agree, I think allergies are massively under-diagnosed especially CMPA where many children grow out of if before they are old enough to explain why they are feeling miserable and unwell. And knowledge of allergies in primary care is often seriously lacking, especially with regards to allergens passing though breast milk. If HCPs had to pay a £1 every time one told a breastfeeding mother allergens didn't pass into milk we could fund loads more research! ;)
Sadly my little girl is nearly 4 and still very sensitive to milk and my 1 year old is allergic to milk, soya and possibly tomato and some legumes (we are still working out exactly what).