All of these symptoms could definitely be mast cell disease, because they match perfectly. Have you ever tried Zyrtec? One of the major specialists switched me from just one type histamine blocker to 2. I used to take only zyrtec (and zantac). Now I take allegra, zyrtec, and zantac. He foudn that having the 2 different types of allegra and zyrtec, worked better in patients. It works great for me, and I used to have the type pain you have (IBS, but it really wasn't - it was mast cell), but I am great now.

I take zantac and allegra in the morning and zantac and zyrtec in teh evening. If I get ill, I take an extra zyrtec in the morning and if I get ill later in the day, I take an extre allegra then.

Sorry this is short, I am just so tired and kind of brain dead. I'll try to come back and elaborate tomorrow. Going to bed now!

I only have a second, but the reason your symptoms broke through the meds later was because the stress was just too high. Doing some mental relaxation things during that time will help, such as visualizing yourself getting control of the symptoms. I literally scold myself in my mind, telling myself that I know I will be fine and I Wong tolerate anything else. It works. Others have reported the same thing.

By the way, you should try 10 mg zyrtec in place of your evening allegra. Using both meds often works better.

Gotta run. Off to my daughter's cheer competition!

Thanks all. My GP is going to think I am an idiot. I know I should be waiting to have a doctor advising me on meds, but it takes months to get anywhere as we've seen with both of our kid's having ongoing medical issues, and I thought I would start testing it out.

It was such a relief to have the pain ease off.

I am very curious though to know if mast cell is an issue I have. I don't faint often anymore, or have palpitations, but when I was younger and WAY more fit I fainted quite a number of times, and also recall seeing doctors becuase I was concerned about palpitations and shortness of breath. They didn't find anything wrong with me, and those symptoms either went away or I just stopped worrying about them cuz life got too busy. I never considered these symptoms as connected, and have lived with some of them for so long that they just seem like part of regular life (like neck/shoulder pain, IBS etc). I don't even talk to the doctor about those symptoms.

Cutting back on the meds today to see how I feel, I only had 2 Tylenol/2 Advil for the pain, which didn't help much if any; but late afternoon got the gut pain twinges starting so took 150mg Zantac. My shoulder pain/hip pain stopped shortly after so for some reason they seem related although they probably aren't supposed to be right? H2 receptors aren't supposed to be related to bone pain is it?

It's bedtime now, and pain is back, so will trial the Zantac again even tho it shouldn't be helping with joint/bone/muscle pain right?

Thanks much for your feedback.

My daughter is in at Hospital for Sick Kids this week to see a clinical geneticist about her recent findings, and I know this geneticist thru an online forum for folks with the genetic condition my son has - she's also a Dev Ped, so she will hopefully be able to get the ball rolling with assessments for my daughter if mast cell is an issue for her also. If anyone will jump to help, I think it will be this doctor.

Unfortunately, with two little ones both with medical concerns and genetic issues, stress isn't going anywhere.

Thanks again.

just to update. the geneticist was no help for my daughter. but zantac continues to assist with her GI pain.

saw the GP today who pointed out that it should not help with pain below the belly button. i suggested perhaps it is a mast cell issue causing it, and that the literature suggests that H2 blockers will help in this case. he looked interested. i gave him a number of recent articles - the consensus document, and other articles by Afin, Akin and/or Castells et al - in case he wants to prepare for the upcoming conference call with Dr. Castells (i'm having it in his office).

in the meantime my symptoms have largely subsided mostly. my period started so maybe they were associated with PMS... lovely. i can feel the pain moreso today but the last couple days have been mostly pain free. but then there's the other symptoms like gagging that only seem to subside with the H1 blockers. interesting stuff this mast cell thing.