Sympathy
My dear bitsy,
I joined this forum specfically to reply to your post. having stumbled upon it, i felt compelled to respond to this. I am not a doctor, but it is precisely these kind of problems that encouraged me to study clinical nutrition. What i want to say is that while my problem is not nearly as serious as yours (autoimmune), i know what a restricted diet can do to your entire life. It affects your mental state (psychological stress), your relationships and interactions and even the way you identify yourself.
What advice i can give you is that you must never and i mean NEVER stop searching for a treatment or a cure. Your illness is genetic, which makes it difficult to treat, but you most definitely are not being propely nourished and this leads to other problems. That is why i will suggest a very special man, whom i have the utmost respect and faith in. Try to look up Patrick Holford and if possible get hold of someone who is trained by him. Furthermore, become completely educated about your illness - why it happened, what causes it and what treatment is available.
Currently there is research surrounding stem cell treatment for this condition, and it may be worth contacting professionals involved in this research. Join medical journals such as Pubmed and get proactive in finding your own treatment. Doctors are wonderful and they have diagnosed you, but now you need to find someone who can help you derive a more substantial nutritional therapy. This is also precisely why people find themselves searching for alternative treatments and looking towards herbalism and homeopathy - beacuse traditional medicine has effectivley failed them.
Look for help in all possible avenues, and don't stop.
Look towards the following avenues:
Clinical nutrition
Clinical ecology
By all means attempt to contact Patrick Holford.
If you need anything at all...let me know.
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