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.
Michelle, once again, you are too kind. There are far worse things in the world than multiple allergies. Am thinking of you Caliegh and KatieBoo. Hoping things get easier. Just remember you’re special!
I have celiac disease. Sorry you have both. Your a veteran and I understand that. But please go to this website: breakingtheviciouscycle.info The above “Subject” the folks I listed are the ones who both discovered (Dr. Haas) and further promoted this particular diet for chron’s, ulcerated colitis, celiac and autism. You’ll not be disappointed. Also, do “searches” to find out even more about those two individuals. You did not need to lose your intestine–no one does if they knew about this website and followed the SCDiet outlined. In much concern for you, Sue
Thanks, Sue, for your suggestion for Caleigh and KatieBoo. I do know that a number of people have found the Specific Carbohydrate Diet very helpful – although it is quite hard to follow… (I did actually blog about it some months ago.) But I certainly think that anyone with serious digestive problems should at least take a look at the site.