Hello, Marcia. I had to google  paleo / wahls diet, I had never heard of it! It makes sense that returning to what our bodies are 'designed to eat' would make us [any one not just people will Mastocytosis] healthier.

I am fortunate in that living in a rural area I can access locally grown food.  I can eat all root vegetables - which are also great fillers when you are restricted. Locally caught seafood is also good for me. In terms of meat I don't eat pork or lamb but can tolerate beef [local Aberdeen Angus] and free range, local, chicken.  Have you tried game meat? Pheasant, venison, wild duck and so on, I have no reaction at all to these. I don't tolerate beans or pulses but can still enjoy soups by using root vegetables such as leek and potato or carrot and corriander. I can't eat the flesh of fruit but can drink fruit juice so berries [which grow everywhere here] can be taken that way. I think preservatives and 'bulkers' such as corn syrup and palm oil are to blame for a lot of ill health in the West - difficult to avoid though as they are in everything that doesn't grow in the ground, fly in the air or roam the hills.

I was on a short course of steriods last year for a swelling on the left side of my face which came up as a side affect of a bite which became infected. They worked a treat and also gave me a lot of energy - I think long term they can have a negative impact but that might depend on the dose.  We are all different, as you know, what works for you might not work for me - so this condition goes

I am interested in trying Interferon because it has been proven to reduce the mast cell burden. I accept that the treatment itself can be debilitating to say the least but I feel the gains, in terms of being able to do the things I want to do in my life, far outweigh the pains.

For cleaning stuffs I use a brand called Ecover - not sure if it's sold outside the UK - all natural ingredients and does as good a job as the chemical based ones.

Anyway, here's to a happy and healthy new year. I won't be starting the Interferon for a couple of months but I'll keep you updated.

yes yes Ms. Deb...my understanding is this med is for a treatment such as chemo
and I also have read thru my many many years that it has not helped..it is something that should be very thought out before starting..should be interesting to see replies on this one
redbird

Thanks Joan and Redbird.

Yes I know there is no 'cure' for SM. Interesting comment re marrow transplants - has this been attempted, are there any papers on it?

Essentially, I am looking for 'respite' i.e. a reduction in the mast cell burden as my current levels are unmanagable at this point in time. Interferon is used widely in the UK for Hep C and so on and has good results with 'minimal' side effects for many. I have thought this through, Redbird and realise that it may or may not deliver the results I am looking for.  I have complete trust in my consultant, he is well respected in his field and teaches across the country.

Cutty:
First I have heard of almost none if any good results from cancer drugs such as Gleevec. There is a new drug on the horizon in phase 3 test called Mastinib. It being tested all over the world. My doc who is an asthma specialist has used it with good results in phase 2 testing for asthma. I brought it to his attention going 2 years ago when Dr V @ MD Anderson in Houston was involved in it's testing & had emailed DR V about the test group. But distance was too much of an issue. I tried unsuccesfully to get in my doc's testing group, but was refused because my asthma is not chronic & I would taint the results, never mind that I was a willing participant & it may have helped me. I have SM with constant skin pain & sensitivity. He now promises me that if my insurance goes along with it & he'll try his best to help, that as soon as the FDA here is the US approves it, he''ll prescribe it for me.
It's supposed to be approved by agencies around the world at about the same time. Here is the link.
http://www.ab-science.com/
Look under human medicines tab
MikeV

had my doc appt yesterday. bad news on the mastinib front. my doc who was testing it for asthma rejected it as medicine was tainted, how he found that out i don't know, so they stopped his test & AB Sciences had to remove from market. I assume they are going to rework how they are making it but this could be years. also anybody heard of a blood test that would show whether you had ckit mutation. he ordered one up for me. said bone marrow test was no longer required to find out with this new blood test
mikev

The BMB may not be needed to test for mutations, but it is usually requested when tryptase levels are high and SM is suspected in order to look for clusters of mast cells and abnormally shaped mast cells.