Mast Cell Activation, Allergies and The Elimination Diet

About 2 weeks ago, I started doing some in-depth reading into Mast Cell Activation. It seems that MCA could be a component for some people in M.E. and other diseases. I am always looking for a new piece of hope or a new treatment to try, and if something (usually symptoms described) resonates with me enough, I usually end up doing a marathon of research (and try not to make myself worse by overstretching myself).

One presentation of MCA is in Mastocytosis. I found if I looked up information on mast cells, I kept coming up against this disease. The thing is, one can have MCA without having Mastocytosis - see: http://www.mastcellaware.com/about.html. Anyway, Phoenix Rising's forum has a lot of M.E. specific information and discussion about this... so if you want to know more, check it out on there.

What interested me highly is that, even with Mastocytosis, out of the list of symptoms here:

http://www.mastocytosis.ca/signs.htm

I have at least 42 out of the 58 - so I feel that is is possible there is a mast cell activation component to my illness. I am currently exploring treatment which involves: histamine 1 and 2 blockers, and mast cell stabilisers.

In addition, I seem to have increasing allergies/intolerances - reacting to things/food can be part of MCA. On a Mast Cell Disorder forum, the reactions people were describing were SO similar to how I react that I was really surprised. On that note, I have recently been getting sicker after eating, to the point where I stopped wanting to eat. Yes, Miss Foodie, actually preferred being hungry/starving than eating and suffering the poisoned after effects. It reached a point where I felt that I need to sort this out... imagine if a big component of me feeling ill is related to allergies!

I started on an elimination diet 3 days ago. You can read about it on my other blog: http://theonionfreekitchen.blogspot.co.uk/2013/09/an-update-elminitation-diet-and-more.html

I already am having no reactive episodes after eating this restrictive diet. It will be interesting to see what happens when I start the food challenges. I am a bit scared to be honest, as when I react, I react so badly, I literally feel like I am being poisoned and my body goes into a terrible state. I don't want to induce that, but at the same time, I need to know what to avoid.

As I was doing more allergy research I came across a lady named Joyce Weaver wrote a book called The Gourmet Rotation Diet for Allergy Sufferers - while talking about writing the book she said:

Writing this book was one of the hardest things I've ever done. I was a chronic fatigue sufferer and some days I could hardly get my head off the pillow. It felt like I had a permanent dose of flu. I got no help whatsoever from the NHS, but luckily I found a private allergy specialist.

Having discovered that I had multiple food and chemical allergies and received pioneering treatment, as well as radically changing my diet, I'm now much better, thank goodness. I wrote the book because I just wanted to help other people in similar situations to help themselves.

I almost feel like getting in touch with her to find out who this allergy specialist was/is. Anyway, I think I will get her book and see if it might help me. You can read the whole article here: http://www.freefromrecipesmatter.com/recipes/cookery_writers/articles/joyce-weaver-09-13.html

LDN increased to 4 mg

Looking towards the West Shore, Llandudno

When I finally got back from my travels - after my birthday trip on the boat, I went to see my college friend and her son - I did something that was probably not that wise. In my defence, I had been waiting for months for the right opportunity to do it: a time when my calendar was totally free. I upped my dose of LDN from 3.5 to 4mg. I am now only 0.5 mg away from the optimal low dose.

On the one hand I had assumed that nothing bad would happen as a result of this increase, and on the other hand I had left the free time to make sure if something did go wrong, I would be able to work through it. Of course, despite my optimism I did get a bad reaction. I think this was partially because I had also done so much in the latter half of August, and I was already suffering and trying to recover from that, so the increase just tipped the balance. I was really sick... It took me about 8 days to feel the side effects of the increase lessening. One has to really hold onto the thought that 'this is just temporary and will ease', because the feeling is so bad. I have been suffering really bad brainfog/cognitive impairment, and that doesn't seem to have lifted... blah. I am hoping over time it will improve again.

I have one more increase of LDN to do, and will probably do that in the second half of October. I will be staying on LDN indefinitely. I can't see myself willingly coming off it now, as that July 2 day accidental break was a total disaster.

Now I feel I have experiemented with and realised the value of LDN in my treatment plan, I am moving onto looking into Mast Cell Activation and trialling treatment. I will probably post about that separately next time I write on here.