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.’
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.