‘Less than a year ago I was a bright, happy, energetic, slightly overweight 45 year old. Now I am a shadow of my former self. My husband and children are worried sick about me, I am having to re-home my beloved dog as I can no longer walk him and and I so fear that my days are numbered that I have just made my will.’
So writes Clare who, since January of this year has lost over four stone and whose immune system has gone so far off the rails that she can only tolerate six foods (venison, rhubarb, turnips, swede, dates, and dried cherries); even they make her feel seriously ill and her reactions to them are getting stronger. The dozens of doctors, consultants, allergists, specialist gastroenterologists, immunologists – and psychiatrists – who have seen her over this period can find nothing wrong with her apart from slight inflammation in her stomach, even though she suffers with terrible malaise, pain all around the abdomen, headache and migraine, sore throat, cystitis and rashes, her hair is falling out – and she cannot eat! Hospitalised for four weeks after she collapsed in April, she even reacted both to elemental formula fed via a nasal tube and to intravenous foods.
Why is her immune system attacking every sort of food that she puts in her mouth? Nobody knows….
In desperation, and inspired by John Scott’s success in controlling his total food intolerance (read about it here), Clare is now trying helminthic therapy, but, initially at least, her system even rejected the worms. Hopefully she will fare better with her new ‘dose’.
A few weeks ago I blogged about children with eosinophilic gut disorders (see here). Their plight is, in many ways, similar to Clare’s – and one has to wonder whether it is an over-proliferation of eosinphils that may also causing Clare’s problems although, surely, one of the many specialists that she has consulted would have checked that out. But at least the children have a ‘diagnosis’, doctors who believe that their illness exists and is not some figment of their imagination, and who can offer them some treatment even though it may be nowhere near ideal.
But for adults in Clare’s position there is no specialist Great Ormond Street Unit – indeed, as she says in the story that she has written for FoodsMatter, ‘the only people who seem to understand how I am suffering are other people like me’. Thank God for the internet which has allowed those with strange and intractable conditions to find other sufferers, to exchange ideas for treatment or at least management – and to find some moral support.
If you wish to read Clare’s story in full click here. If you would like us to pass on messages of support, or any further suggestions that might help her, we will of course do so with pleasure.
Paddy has just emailed as follows:
Has Clare tried betaine hydrochloride and pancreatic supplements to help her digest her food. It has been an enormous help to me. Great sympathy for her. Real problem.
Doctors only think of high stomach acid but Dr. Gaier told me of low stomach acid and it worked. I was being treated for bronchitis by the medics.
I tried maca powder as a supplement ref. hypothyroid and have had an awful reaction – if only I had looked up the side effects before taking it not afterwards!!
Local herbalist now sorting my innards out.
I see they want to vaccinate people against coeliac disease now. Stone age diet?
We have just received this email which we have passed on to Clare:
Hi I have suffered very similarly but have found much relief in doing coffee enema daily and accupuncture treatments in last 6 mths . Also enzymes after each meal and lots of probiotics. Pl infirm Clare not to give up hope.
I have this issue myself and have had it for 3,5 years now. I live off an elemental feed and occasionally i tolerate potatoes and tomatoes which is such a blessing. My hospital dont want to prescribe me this elemental feed much longer since it’s expensive like hell and all their tests show nothing, so in their view I am faking it. Have tried so many therapies of different sorts to some help, but not enought to make foods sustain me. Don’t know what to do anymore, kind of losing hope. Starving is the worst experience I’ve ever had and I don’t want to experience it ever again.. I pray and hope for some relief for all of us who go through this. Sorry for such a depressing comment. Thanks for sharing, even though it’s been a couple of years since the post was published.
Blessings!
Dear Agnes –
So sorry to hear about your condition – I have just read your comment on the blog. I think you should have a look at some of the articles on this section of our site by other people who have been in your position. There may yet be a way forward.
Best – Michelle