From a salicylate-intolerant site visitor who has been batted backwards and forwards between allergy and dermatology departments, neither of whom will give her the time of day because they have tested her for the full gamut of IgE mediated ‘proper’ allergies – and she does not have any:
‘Went back to dermotology today who told me I suffer from panic attacks. That’s why I pass out, apparently. I told him that’s ridiculous. I’m a full time working mum of 3, I take all in my stride, you could make me do a bungee jump and I wouldn’t panic. He couldn’t explain how panic attacks link to crippling arthritis, urticaria, angiodema, lychin syndrome or the atopic dermatitis he has diagnosed me with. He totally dismissed salicylate intolerance and couldn’t even pronounce it properly.
Anyway, after I asked him whether he felt I could safely leave his clinic, have a lovely meal and a few glasses of wine – and whether he thought I was, in fact, imagining all this – he said no, he wouldn’t suggest that. So he has now referred me to Southampton allergy clinic, saying that he may well be wrong on this occasion. But he continued to insist that I am not allergic to anything.’
Sound familiar?
It can be hard enough, goodness knows, to get yourself referred to helpful clinics and consultants if you have a relatively common allergy or intolerance, such as dairy or peanut, but if you have a more obscure one, especially if it is not IgE mediated, God help you! Salicylates, histamine, sulphites, and nightshades seem to be the worst – at least if the hits on those sections of the FoodsMatter site are anything to go by.
We average around 70,000 unique visits to the Foods Matter site each month and as anyone who has ever browsed it will know, the site includes large sections not only on food allergy and intolerance but on autistic spectrum disorders, asthma and respiratory conditions, digestive conditions other than coeliac disease, mental health, electrosensitivity, chemical sensitivity and environmental medicine, ME and CFS, headache and migraine, alternative and complementary medicines as they are used in the management of allergy and intolerance, infant and child health and a large section of conference reports. Yet of those 70,000 visits over 40,000 are to the relatively small sections on salicylates, histamine, sulphites, and nightshades, with histamine intolerance clocking up nearly 20,000 visits on its own!
While these figures do suggest that those four intolerances are much more common that is generally appreciated – especially by the medical profession!! – they also indicate is how little information there actually is out there on any of them. As a result an awful lot of the enquiries end up with us. If you Google ‘histamine intolerance’ the Foods Matter site comes in at number two on Google page one, after Allergy UK who only offer one relatively short page on the subject. If you Google ‘salicylate intolerance’, the FoodsMatter site comes up at number five after an excellent Australian site (fedup.com.au), Allergy UK (again one relatively short page), Wikipedia and WebMD. For sulphites we are a little further down Google page one at number seven, but for nightshades we are right back up there at number one on page one!! Indeed, the late Dr Harry Morrow Brown’s article on potato allergy gets over 6,000 unique visitors a month all of its own!! (Mind you, Dr Janice Joneja’s article on histamine intolerance gets over 14,000 visitors a month… Eat your heart out, Dr Harry!)
So, because these poor intolerance sufferers are so poorly served, we are working on making the FM site a lot more interactive for them.
Dr Joneja, a highly respected allergy practitioner who has been writing on the subject for many years, is now offering a Q & A option on histamine , salicylates and sulphites – not to diagnose or provide consultations for individual cases but to answer questions in a more general fashion which will, hopefully, help to inform intolerance sufferers. Alex, who compiles the figures that I quote above, fears that we are going get totally overwhelmed with queries but we will have to see how we go.
Meanwhile, we will also set up ‘at arms’ length’ forums in these four areas. This has already kicked off in the salicylate section where a site visitor very kindly emailed us with her own experiences and some advice for other salicylate intolerance sufferers. We put her advice up on the site and in no time we had an email from another sufferer (the lady quoted above) since when they have been in constant communication.
I am not entirely sure where all of this is going to go, but there is surely a need for something more out there than is currently on offer. I am just sorry that Dr Harry (Morrow Brown) is no longer around to offer his own original take on allergy/intolerance of all shades and descriptions. But if you do wish to read his thoughts on some of the more obscure allergic conditions that he treated in his 70 odd years of practice, check into AllergiesExplained.
Have been twice, as you know in the last few years to Southampton, an absolute waste of time, even my GP said so. Saw 2 professors who had absolutely no time for intolerance and anything that was not IG mediated. A much wider horizon is needed. I seemingly do not have a true allergy to Salmon, but am violently ill if I eat it, probably because I cannot digest it. In the last few years I have had to give up sardines, same reaction. If only they weren’t so narrow and listened to the patient.
Everyone should read ‘Not all in the mind’ recommended to me by my first allergy specialist. It is still available on Amazon.
I am a Natural Allergy Therapist based in Ipswich, Suffolk. I use a pain free, safe and non-invasive method to test over 330 potential allergens – including Salicylates and other obscure allergens! I use natural homeopathic remedies to desensitise patients to their allergens with fantastic results. For people that are prepared to try something different there are complementary therapies such as mine that do work for allergy testing and desensitisation……. despite what the general medical profession may tell you.
My boy is waiting for Soton allergy appoint since last Sept appoint in March Just hope they review his intolerances and are not dismissive ! Maybe children’s dept more responsive?
Do hope so….. My feeling is that they will be as Jacquie’s experience was some years ago and I think that the allergy world has become more cognisant of intolerances and the damage that they also can cause over the last few years. Fingers crossed for you…
I am a RGN with a post graduate diploma in allergy. When I was researching for my dissertation “allergy at primary care level” it was joke.
I now run my own private clinic. I do not choose to use the IgE blood test or skin prick test, the only testing recognised by the medical profession, even though we can get up to 60% false positive and false negatives using this method. These tests are also meant to be free on the NHS – another joke especially in Devon where I practice.
When is an allergy not an allergy? When it is an hypersensitvity, intolerance or digestive disorder. As it has been mentioned the medical profession have scant interest in these symptoms even though they cause massive quality of life issues in individuals. There is also huge amounts of evidence based information which they also seem to totally disregard.
Allergy can effect all systems and it is known that if you have one allergy you are likely to have more then one. So what happens when you present with asthma, eczema and rhinitis, a common combination? Asthma will be referred to Respiratory, eczema to Dermatology and Rhinitis to ENT. And they rarely refer to each other.
I was taught taking a good history and education are vital in diagnosing allergy and I feel that is even more the case for hypersensitivity, intolerance and digestive disorders.
Marlene – I so agree!You have said it all…..
I live in France and my IgE results came up positive. When I asked the consultant what it could be, after also having been first given the common allergen skin tests which were all negative, he shrugged his shoulders.
I have consulted a nutritionist about histamine intolerance which is what I am sure I have, but the extremely strict diet I have only helps with some of the symptoms. To further all this misery, 18 months ago my sense of smell and taste vanished overnight. The medical profession, including some ” alternative” people have all told me that this is because of age!
For people with histamine intolerance there is a very good website for recipe and other help :
lowhistaminechef.com
And thank goodness for the Foods Matter website.
I was very interested to read the various comments made on the subject of salicylate allergy. In 1993 I was diagnosed as having nasal polyps in ALL my sinus cavities. I had a major operation to remove these, but 6 months later I was as bad as ever. I saw a different consultant and he immediately said he had had a previous patient with a similar problem and it was an allergic reaction to salicylate. He referred me to a dietitian who suggested to me that I contacted Allergy UK. I was sent a comprehensive diet sheet, and when I saw the consultant 3 months later, a scan showed a great reduction in the number of polyps. A scan 3 months after that showed my sinuses were clear. I kept to that diet sheet for many years and have had no further problems.
I owe a great deal to Alllergy UK, and wish them every success in their endeavours to get better treatment for allergy sufferers.
Thank you for that Doreen – if it is OK with you I shall add it to the comments page on the website as well as the blog. And I am so glad that you got it hacked!!
I heartily concur with what Marlene says above. I come from a similar background to her, working as a nurse in the NHS at a time when I was beginning to understand the impact that food intolerance could have on chronic symptoms, so found it impossible to work in a system where the main treatment was to throw medication at the problem, rather than find a cause. That was 30 years ago! And I cannot believe how little things have changed in that time. For 20 years now I have been using a Dietx machine [new version of the Vega machine] to test people to see actually which foods they are reacting to. I have amassed MASSES of data on which foods are the most common problems , and how well my system works for many chronic conditions, because follow people up rather than sending off into the middle distance, never to be seen again!
The Dietx machine gets a bad press often , but that is mainly because the training in this country is only a 2 day course, when most of the time is spent on nutrition, and only a few hours on using the machine. This means that many practitioners get completely unreliable results.
I feel so sorry for people who are being fobbed off by NHS, and made to feel that their symptoms are ‘all in the mind’ because doctors [mostly] will not consider alternative ideas.
Keep up the good work Foods Matter!
Excellent idea that Q&A. I would agree totally about the number of queries. I get asked all the time. I have set up a couple of pages that I’m building on the more ‘obscure’ (or not!) types of sensitivity where I have, of course, pointed people back to FM and to Janice’s articles as well as my own. Food Allergy Types and Allergy Conditions (like OAS/FPIES etc). Will be so nice to be able to refer people to the Q&A 🙂
Fab – Micki – between us hopefully we can really provide a resource. We have already had about five queries since I set it up last week – so fear that Alex may be right when he says we are in danger of being o overwhelmed….
If I can help let me know. I spend most of the time telling people they don’t have allergies but other mechanisms which cause serious quality of life issues.
OK – will do.
Hi Doreen, How did you get the diet sheet from Allergy UK? I visited their website to look for it, but couldn’t find it. Please let me know! My husband has had polyp problems for ages, but was only diagnosed with salicylate sensitivity today.
thanks so much
Johanita Joubert
Have you considered the comorbitity of histamine intolerance?
May I please have some information on the dietx machine and what people think of it, I am considering buying it & doing the course.
Any help would be greatly appreciated.
Thank you
Sorry – afraid we know nothing about it.