‘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.