For those new to the forum here is a brief on my situation: I was diagnosed with MCAS by one of the up and coming researchers, Dr. Afrin. I LOVE this doctor! I value his opinion and respect his experience. I do have a local doctor that is 'supposed' to be working with Dr. Afrin to treat me but I have a strong suspicion he is not doing so. That was pretty much confirmed by the response I got when I email Dr. Afrin with questions as to my current medication regiment and my path forward.
At any rate, I was unaware of exactly WHY we take H2 blockers. I assumed it was for the GI problems and increased acid production. Maybe in a long about way that may be true but my acid production is SO off the charts. I wake up at night choking on vomit!!!! My pooh (sorry for being explicit) is golden rod yellow. So my local doc put me on Prilosec and took me off the Zantec. I'm still choking at night and still have this permanant lump in my throat and my pooh's are WORSE! So Dr. Afrin was kind enough to write me back. The poor man is so inundated with similar email requestes but he was caring enough to respond. So the following is one of the answers he shared with me which explains WHY we take Zantec or Pepcid, in other words an H2 blocker:
" I commonly see that MCAS patients have their H2 blocker (in your case,
Zantac) reduced in frequency once a proton pump inhibitor (in your case,
Prilosec) is added.  This is in the misguided belief that the H2 blocker
is being given solely to address the receptors on the gastric parietal
cells which cause those cells to produce acid.  While all H2 blockers do
have this effect, the principal reason an H2 blocker is given to an MCAS
patient is not to block the gastric parietal cell H2 receptors but
rather to block the mast cell H2 receptors.  Histamine released by mast
cells causes a wide array of effects throughout the body, including
"looping back" to dock with the mast cell's own H1 and H2 receptors
which, in many forms of MCAS, stimulates further mast cell activation,
and thus both H1 and H2 blockers (e.g., Claritin and Zantac) are needed
to interfere with this loop-back mechanism.  Thus, I recommend that you
boost your Zantac 150 mg back to twice daily. "
I hope in sharing this information that it will help someone else out there. I can assure you I will be starting back on my H2 Blocker, Zantec, right away.
Good luck my fellow Masto Friends!

Kim

Thanks Ana! I've not been to active on the forum for months! Mostly just LIFE stuff but I'm struggling health wise. I wanted to share this info because like myself I know many others are dealing with docs that just do not quite get this disease and how to treat it. I hope it's helpfull to many!!!!

Hi Kim!!

Nice to have you back!!  Sorry you're still struggling with doctors!!  Oh how I hate THE DOCTOR GRIND!

It's a shame your local doctor doesn't want to cooperate.   FIND ANOTHER!  I know it's not always that easy and after a while it's possible to run out of options, but until you do, keep pushing.

I would also try doing a bit of experimentation with your meds too.  You might want to consider upping your zantac to 300mg 2x/day.  This is what many of us take and I'm sure if you ask Dr. Afrin what he thinks, since the 150mg may not be enough, he may say go for it.   I honestly think that if you were to do another colonoscope, this time with your doctor being even more careful in investigating, it might be possible that there are some MC aggregates there.   I was shocked when one of my kids showed that he has a focal point of them in his intestines.  His tryptase is only 2.6ng!!!! lower than my own!

According to my doctor, the place where we have the most activity is where those mast cells are gathered.  The problem we MCAS patients face is that we can be either clonal or non-clonal which means that there is indeed a defect on the MC, however, the suspicion is that depending upon the defect, you may have the aggregates or they may only be activated.  They still don't know yet.   So, this may be why there can be an increase in normal MCs or there can be focal area of aggregated MCs.   It explains a great deal!

Regardless of which it is, it would still be a good idea to have another colonoscope to see what the picture is.  If you can find it, then, that leads to further discussion as to what treatment options are then open.

Hope this helps!  And good to have you back!  Missed you!

Lisa

Great advice Lisa!

Why off your meds? Most of the mast cell docs don't approve of doing this; If I were you I'd have a low threshold to restart them

Eeek! Good luck! You're braver than me. Glad a mast cell doc is involved!

Hopefully they give telling results

I'm just trying to sort out triggers on my own and have had serum IgE testing

who knows which route is safer! Either could have a lot of issues I guess

Good luck

Thanks for your reply Joan. I already know I have an allergy to dust. I had the blood test done 4 years ago. I'm not sure what to expect but I'm a bit nervous. I'm thinking of bringing the emergency protocall with me just in case.
As for mymeds, i was taking Allegra and Zyrtec before I saw Dr Afrin. The only side effect I experienced was being tired. Dr Afrin prefers Claritan and Pepcid because they carry less risks. We've been tweaking and readjusting my meds ever since. I've gone along with it because I felt he knows better then I do. Although my local doc took over and made a mess of some of my meds. But Afrin was kind enough to straighten things out.
You know, now that you mention Dr Castels theory of not going off meds for testing, I think I remember that conversation on here before.
Thanks again Joan.

So you think the doctor that has asked me to go off the meds should contact Dr. Castells before the testing takes place? Would it be possible to ask you or someone on here for Dr. Castells contact info that I can pass along to this allergist at Vanderbilt and request he contact her? You've got my attention and now I'm concerned. I'm NOT a shocker. As in I've never fully passed out. I do get light headed, naucious and my bp drops seriously low. You know, I was wondering how accurate an allergy test would be considering that even when my skin it scratched I get welts (on my back) or raised rash (on my arms).
Dr Afrin's thoughts on the Claritin is in general and in no way specific to my reactions. I have none (except extreme tiredness). This will be a question I plan to discuss with him in person when I go to see him in a couple weeks.
As for the dust allergy I know I have, I had at one time practiced environmental measures for it. I even went so far as to purchase a Rainbow Vacuum because of the demonstration I saw which included statistics on dust allergies. I used to suffer upper respiratory infections several times a year. But I have not had one now in 2 1/2 years. So since my allergy doesn't really bother me much anymore, I just use common every day sense and I do fine with it. I try to keep the dust down. I have air purifier's and, you betcha, I still have my Rainbo Vacuum
Joan, I truly thank you for bringing this allergy testing/no meds situation to my attention.

Hi Kim,

     Don't give it a thought.  If this does come up at some point, you'll know what to do. Might want to put encasings on your pillow(s), mattress, and box springs just to see.  Also, if they can take it, use hot water to launder your sheets.  They might still be "filling your bucket."  Allergies make me very tired.  I'll PM Dr. Castells' email anyway, in case you ever need it.  That's all I have, but I think you can Google her at Brigham and Womens' Hospital in Boston.

   I'm interested to know why Dr. Afrin thinks other antihistamines can be dangerous and why.  Would love to know after your visit.

  Happy to hear you're not having testing now.  Still want to answer your question about super sensitive skin, in case anyone else wonders.  When they test, they first do a positive and negative control.  The first is histamine, to see if your skin reacts to it.  If it doesn't, then your tests won't show anything.  The second is saline.  If your skin reacts to plain saline, you won't get accurate results on the skin tests.  It'll show more reactivity than is probably really happening.  Then they'd probably just do RAST tests by drawing blood, although those aren't generally as accurate for environmental allergens.