here's my question I have not been on for a while I love you guys but needed a break I just wanted time to regroup and try to figure this disease out apparently there is no figuring it out as even the biggest Dr's can't figure it out, I was told with MCAS you should not have any increase in your number of mast cells anywhere but I just got back my endoscopy and colonscopy bx's and it showed over 80 mast cells in my colon they told me they stopped counting b/c they could have continued b/c I had so many and it was producing tryptase so why if I have so called MCAS do I have so many mast cells in my colon and is that considered a definate diagnosis and why cont doing blood work and such if I have this result ok thanks all

Goldie,

I wonder if you were just reacting at the time, and thus tryptase levels would rise. What doctor is overseeing your care, and testing for mast cells in particular body parts? I am under the impression that the main mast cell researchers don't do that and really don't care because they base number of mast cells upon what they find in a BMB (bone marrow biopsy). I always thought that it was kind of like being pregnant -- you either are or you aren't. In the same way, you either have too many mast cells or you don't.

Many with MCAS don't have too many mast cells, however, some may have too many. Either way, the best thing you can do is to be aware of what triggers your symptoms, try to avoid those triggers, find the right meds that help you stay well, and adapt your lifestyle to reduce triggers. If you can do these things, you have a much better chance of getting your MCAS to calm down and, for the most part, leave you alone to enjoy daily normal life.

I had throat swelling while drinking the prep...couldn't get it down so couldn't do the test.

I really worry about colonoscopies as well. I had one years ago when they were trying to figure out what was wrong with me. I remember having a very hard time drinking that nasty liquid, especially because a large quantity like that will trigger my anaphylaxis. At the time I was not on meds, nor did anyone have any clue my attacks were anaphylaxis.

After I had the procedure, I remember being in recovery and then being sent home...only to have my mother (driver) turn the car around and head back to the hospital because I started feeling really ill and was vomitting. I still don't know, but I suspect that I was triggering from a variety of things - the anesthesia, the procedure, the stress. So, I think that it would be really helpful if I started a new post which discussed exactly what a mast cell disease patient should do in advance of a colonoscopy. Keep your eyes open for the post, and I will put one up soon!

Deb;
Another Great idea ! Thank you  
Gumby, do you mean that you should start taking Gastrocrom, to help with the mast cells in the colon ?
lori

It could also help to start a food and symptom diary and try an elimination diet, such as the low histamine diet, if you suspect food triggers.  A rotation diet might help, too, in which you don't eat a food two days in a row.

My GI doc prescribes H1 and H2 antihistamines, probiotics, and gastrocrom or ketotifen for excess mast cells in the colon.

I have already tried the chronic uticaria diet and was down to only 5 foods that did not seem to trigger me. When I asked Dr Afrin about this he said he believed I was not well controlled enough with meds yet to  be able to sort out all my triggers yet. I do know that dairy an walnuts, coffee are problems for me but other than those, it just varies so much day to day that it is hard to tell. I have stopped eating left over meats and some of the other high histamine foods but, I made some pumpkins soup one day not realizing it was high histamine and did not have a problem with it. I also have no problem with soy or peanuts. ( I think) but ate something at the Atlanta airport that woke me up @3:300 am trying to scratch my skin off and red bumps, and wired out of my mind. They were all supposedly " safe" foods but I think it may have been some herbs. I have know idea what Dr. Afrin will do with my meds but I just got back my 1st test result a spot urine methyhistamine and I think it was normal @ 30.
Gumby
Ps I am checking the box to be notified of response but never get any emails. What am I doing wrong?