I am so happy that there is a place like this on the web!  I live in south east Oklahoma and there isn't much information to be had out here.

A little about my journey...

I had my first reaction as a baby to my Mothers dog, rash all over and  when it comes to me and my allergies my Mom has never played around so the dog was out.  My first anaphylaxis was at the age of four.  My Mother must have been scared but she she always handled things like this well.  We where at my great grandparents house on an island with no emergency services unless you wanted to wait for a boat.  I remember this reaction and there was no waiting.  My great grandfather as it turns out also had severe allergic reactions and so my Mother used his medicine and thankfully it worked. I remember my face swelling so bad I couldn't see out my eyes.

So I have never had a reaction that bad since, I think because after that I was always on some kind of anti hystamine, inhaler, ect.  I tried allergy shots at 14 but reacted to those so bad that I had to stop (my second  anaphylaxis happened right after one of those shots in combo with taking aspirin, and drinking something with yellow dye.) So after that I avoided aspirin and also yellow dye since I always react with them now.  

I have always had other problems like not being able to stand for long periods, stress making me sick, hives, bad BAD stretch marks, and it got worse after I got married and moved to louisiana where the food is SPICY!  (I now know I can't eat foods in the night shade family.)  

Come down to last month, I'd had a particularly bad year, this time last year I was on three months of steroid packs and shots and inhalers for what I now think was a flare.  So I have been trying to get help and I have very painful periods so I thought I would see a BHRT hormone specialist and after only a few minutes of talking he found out that after some severe pain in my knee and hip for the past month an Ortho had said I might have fibromyalgia.  Well I guess that was a lightbulb moment for him because he immediatly said that many with fibro actually have ehlers danlos and I should go online and find a support group to help since there is no treatment that he can help me with for that.  BTW my labs always come back perfect except for CRP which is always high.  

I got onto and Ehlers Danlos group and learned about MCAD which was a lightbulb moment for me!  A very helpful woman on there, who is on here as well sent me info and the email of a research doctor I could talk to and after describing my episodes (which I've had as long as I can remember with the nausea, cramping, flushing, constapation(when I was young) and now severe diarreah) he said my history indicates MCAS and I should get checked out. He also said in his opinion I don't have EDS and it is the MCAS causeing all my symptoms even the seemingly unrelated ones.  So after looking up some stuff on my own I finally cut out all night shade plant foods, and started taking my antihystamines more often and those changes along with taking benadryle when I am having an attack has made such a world of difference.  Last week I was almost totally house bound.  Now I have energy again and am almost out of pain!

I noticed when I take the Zyrtec that it seemed to wear off after 8 hrs and I would get sick so starting today I am going to be taking it three times a day instead of twice and see if that keeps me going better.  

I have an appointment in 3 months to see Dr. Miner in OK City so untill then I'm doing my best to have some sort of normal life not just for me but my son too who is having a hard time since he is sooo reactive.
Our allergist said both of us (he is 5) are highly unusual for the amount of allergies we have and how severe they are and my son even more so since in her opinion he is too young to have all these allergies, as a true allergy is a learned immune responce.  I have always said that I don't feel I have true allergies but that I have a VERY reactive system and that my Asthma (wich she said is not active if I have it) is not true asthma but just a reactive airway problem of some sort.  That might explain why my sat is never low.

So that is the gist of it.  I always thought that if I could just figure out what was wrong I could treat it but after thirty years was starting to think my life was going to be short and painful.  But after such a turnaround in just one week there is a light ahead!

Hi Jennifer,

  About 20% of people with mast cell disease also have true allergies.  That's the same percent as the general population, so you might have both.  Luckily, the medicines are pretty much the same for both.  I've found antihistamines to be great for pain.  I rarely have masto pain anymore since I've been on better antihistamines.

  Let us know how your experience is with Dr. Miner.  Hope it's a really good one!

  Do you know about the mastokids website?  www.mastokids.org

  There are familial connections in some mast cell disorders, so you might be able to get some information there on safe treatment for your son.

Good luck!

Lucas is one of our members from your region of the country.  Perhaps he´ll pop in here and say hi.   He´s one of Dr. Miner´s patients too.  We´ve got another member as well but I can´t recall who at the moment.  

Lisa