And we think we’ve got problems….

May 9, 2012 By 3 Comments

I thought, when we put Caleigh (the Gluten Freek)’s story up on the sites, that as short dietary straws go, she had drawn one of the shortest. (Caleigh has suffered from Crohn’s disease since she was a teenager and five years ago, joined a mercifully select band of only 600 people who suffer from both Crohn’s and coeliac disease.)

But I have just been sent a link to KatieBoo’s blog and Katie not only has pretty virulent Crohns’ (she has spent most of the last few months in and out of hospital with a violent Crohn’s flare up), and coeliac disease, but has now become epileptic knocking up no less than 30  seizures in the last month!

Not that either of them (Gluten Freek or KatieBoo) are remotely sorry for themselves although like Ruth of What Allergy? and Micki Rose of Truly Gluten Free, they are honest enough admit that, on occasion, it can be pretty crap suffering from such a horrendous range of health problems. But thanks to all of them and their regular (and often very funny) blogging, tweeting and pig headed determination not to be beaten by their bodies, we are all learning a lot more about these conditions which, hopefully, in the long run, may also help them to deal with them.

I think this is probably the moment for a plug for helminthic therapy, championed so vigorously, and with reason, by the wonderful John Scott who does all of our research for us. John has sorted an equally long and scary list of health problems, including total – and I mean total – food intolerance, Crohn’s disease, rhinitis and sinusitis, migraine, ME, MCS and restless leg syndrome, by inoculating himself with a low dose of parisitic worms. These friendly little hookworms appear to have re-regulated his immune system which had been at total and disastrous odds with itself. So if any of you ladies want to know more – Caleigh, KatieBoo, Ruth or even Micki, although she is exploring another and equally exciting way of bringing her problems under control – please go to the helminthic therapy section of the FoodsMatter site where you will find a truckload of information including John’s latest compilation of personal accounts of success with helminthic therapy.

One condition for which helminths do not as yet have a track record is electromagnetic hypersensitivity – although John is always encouraging me to try them out… Maybe… But meanwhile, there are many just as horrendous stories from ES sufferers as there are from Crohn’s/coeliac sufferers. There are a number of them on the FoodsMatter site, including one very sad story about South African, Alwyn Lewies, who has now been reduced abandoning his wife and two small children to live in the bush, having spent many months sleeping in his car, because he had become so sensitive to EM radiation. (One of Alwyn’s ES symptoms was epileptic fits – nota bene KatieBoo.)

However, another blog, EHS Fight Back,  not only alerted me to another ES sufferer forced to sleep in her car but, reminded me once again of the murkier politics which impact on so many health conditions. Dafna Tachover, the mid 30s ES sufferer who runs this blog, has been writing to the president of the Karolinska Institute, home not only of the Nobel Prize, but of Professor Olle Johansson, one of the most outspoken scientists leading the charge against mobile phone technology in its present form and the increasing electro-magnetisation of our world – because, it appears, the Institute is doing its best to gag the professor by evicting him from his laboratory and thereby preventing him pursuing his researches. Now why should this be?…..

Well, this is not a new story, nor has it yet reached a satisfactory ending… But if you want to know all the ins and out check my earlier blogs here and here.

Filed Under: Allergies, Blogging, Electrosensitivity, FreeFrom Food Tagged With: , , , , , , , , , , , , , , , , ,

FreeFrom Food Awards shortlist is out!!

February 21, 2012 By Leave a Comment

Hectic – but hey – that’s what it’s all about!! The 2012 FreeFrom FoodAwards shortlist was published this morning – and almost instantly our internet connection went down! So all those keen shortlisted manufacturers, dying to get their hands on their logo and a press release to send out to their local papers, were left frustrated while we railed at Virgin Media!!!

Never mind – R. Branson came to the rescue and the outage only last for an hour, to be followed by another half hour this afternoon. (And how scary is it when your internet connection goes down and you realise that your whole life now depends on that slender little bit of cable sticking out of the pathway in front of your house….) So, between outages, press releases and logos whizzed through cyberspace while Twitter went into a frenzy of ‘freefrom’ Tweeting and Facebook buzzed with congratulations.

I shall now say no more about it as what you need to do is to go look on the awards site where you will find all the shortlisted products (with links to their websites) – and then have a read of some of the blog posts by our wonderful blogger judges – and you will find links to them on the press page on the awards site. They will give you much better ‘low down’ on the whole operation than, in all modesty, I could!

Addendum….   Sue Cane, our wonderful coeliac beer-and-everything-else judge has written a lovely  report about this year’s gluten-free beer judging – click here to read.

 

Filed Under: Allergies, Blogging, Dairy-free, FreeFrom Food, Gluten-free Tagged With: , , , , , , , , ,

Living with eczema

February 17, 2012 By 1 Comment

Those of us lucky enough to have relatively normal skin all pay lip service to ‘how awful it must be to have bad eczema’ and ‘those poor little children’ with weeping, open sores. (Pictures courtesy of Dr Harry Morrow Brown.) And indeed we do feel genuinely sympathetic – but how little we really understand.

So bravo for Ruth Holroyd who, as many of you will know, runs the excellent What Allergy? blog, for bearing her soul about how totally miserable it is to have a bad eczema flare up. (Read her post here.) As she says, she often talks about her
allergies (anaphylactic to nuts and milk and possibly celery, intolerant to tomatoes and a whole raft of other foods) as allergies make for interesting conversation – but eczema… Who wants to know that you are itchy, hot, scratchy, slimy from too much moisturiser, cannot bear to look at your red, rough skin in the mirror or let anyone else see you either, are grumpy from too little sleep….

Because it is Ruth, and, despite her allergies and her eczema, she is a totally upbeat person, the post contains not only her vent on the horribleness of an eczema flare up, but eleven really useful tips for minimising the misery and helping the eczema to clear.

Ruth’s rant reminded me of reading, some year’s ago, Jennifer worth’s ‘Eczema and food Allergy: the hidden cause?’ Jennifer, who sadly died last year, was not only a generous donor and supporter of the allergy charity Action Against Allergy, of which I am a trustee, but the author of Call the Midwife, her hugely successfully reminiscences of her life as a midwife in the East End of London in the 1950s which has now been made into an even more successful prime time telly series.

Jennifer was brought down, in her early 60s, by appalling eczema that covered her from head to foot, her skin cracking, weeping and itching all over her body. It turned out that her eczema was caused by food allergy and was finally successfully treated by a combination of a rigid elimination diet and Enzyme Potentiated Desensitisation (EPD) – an immunotherapy type treatment which worked on a range of allergens at the same time.

You can still get Jennifer’s book about eczema from Merton Books (also the first publishers of Call the Midwife). You can read the article that she wrote for Foods Matter about EPD here. But, before you get too excited about  EPD  as a possible treatment for allergy or for allergy-related eczema, I have to tell you that it is not currently available in this country – or, indeed, anywhere.

Pioneered by Dr Len McEwen (now retired), EPD was never adopted by the NHS although it was used quite widely in the US. However, an American regulation banning the use of multiple allergens in the formulation virtually halved the market and meant that it was not longer viable to produce in the UK.

However, all is not yet lost. I have just spoken to the  the Friends of EPD, who are part of the National Society for Research into Allergy , who told me that they are hoping to raise sufficient funds to reopen an EPD laboratory and to restart both production and treatment. They suggest that, if you are interested, you stay in touch with them.

 

 

Filed Under: Allergies, Alternative/Complementary Health, Blogging, Eczema, FreeFrom Skincare Tagged With: , , , , , , , , , , , , , , , , , , , , , , , ,
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