Re: Help please...Faith & others with food/chemical sensitivity

Twinkl,

Yes I definitely find that there is a connection between sensitivities and fluctuations in hormones. I know that many of the body's natural processes actually produce histamine (such as digestion) so I think this may be the case with the menstrual cycle as well. Histamine is actually a necessary chemical for many crucial functions in the body...or problem is that we just have too much of it floating around.

Many of the people I know with MCAD or mastocytosis are on the zantac/zyrtec protocol. For some it helps, for others it doesn't. I'm personally not a fan of pharma drugs and they are always my last resort. I'm also not a fan of supplements but I will try them before pharmas. When you mention caffeine like affects, or you talking about Quercetin or zyrtec??

Magnesium has helped me quite a bit in my healing. I used to do the foot baths all the time, now I do them once a week usually. I do use magnesium oil every night before bed and it does help me sleep. When my chemical load was very high I had alot of trouble falling and staying asleep. I found that as the load went down, my sleep improved.

Definitely weather affects us as well. Both extreme cold and extreme heat so make sure you bundle up and try not to be out in the cold too too much! I used to not even be able to walk outside in the Florida heat without feeling sick, but now I'm able to sweat and even do the sauna. So it does get better with time :)

Good luck with the allergist, I hope he's a good one. Its really hard to find a good allergist, let alone one who even knows an inkling about mast cell disorders. I went to supposedly the top allergist in Florida who claimed to also treat mast cell issues but I had to fight with him to even consider that I might have a mast cell problem. Because I have MCAD and not mastocytosis, and even more that I do not have the cutaneous symptoms that most masto patients have, he would not even entertain the idea. He gave me $900 worth of skin prick tests, told me I was anorexic and had psychological problems, and sent me on my way.

Eventually I had to beg my GP to give me a referral to a mast cell doc in North Carolina who was kind enough to treat me virtually. I am good friends with one of his other MCAD patients so he pulled some strings and ordered me the tests.

One thing to keep in mind- the main test that they use to diagnose mast cell issues is the tryptase test. 90% of people with Mast cell activation disorder have normal tryptase, but this doesn't mean that you don't have a problem. With mastocytosis, the tryptase levels are constantly high because to body is producing too many mast cells. With MCAD, we have a normal amount of mast cells, they are just on a hair trigger response. So our tryptase levels only go up when we're having a reaction. If they happen to test you right after a reaction or anaphylactic episode, your tryptase will likely be high.

When I was tested, my tryptase was normal and my urinary histamine was within range but a bit on the higher end. I also had not had any major reactions that day. My doc did confirm that I had MCAD though based on the symptoms I was experiencing daily.

Unfortunately there are few treatments for this condition other than management and avoidance. The standard protocol is the zantac/zyrtec combo (H1 and H2 blocker). The other two prescriptions are ketotifen and gastrocrom. Ketotifen is a stronger antihistamine and gastrocrom is a mast cell stabilizer. I've never had the ketotifen or the gastrocrom, I've heard both positive and negative responses from people on both. In worst case scenarios, they will put you on prednisone which is a steroid, but like I said that's worse case. The only people I know who were on the pred were mostly "shockers"- people who spontaneously go into anaphylaxis- as opposed to "Leakers" like you and I who's levels build up slowly.

My doc basically told me that these were the only options as far as meds go, but I chose to try and ride it out on my own which I am still doing. He was actually very cool about this and told me that he really doesn't like to put people on pills unless absolutely necessary.

Sorry if I'm bursting your bubble (I always chuckle when I say that because essentially we masties are bubble people) but there isn't much research and knowledge about this condition..even though so many have it! I would still go to this allergist and see what he has to say, but don't be surprised if he tells you its all in your head, or if you have to fight for the mast cell tests. Also don't be surprised if everything comes back "normal". You're still having symptoms. You're not ok, and you're not crazy. But you WILL be ok and you just might end up crazy trying to get these jerks to listen :)