I've seen this bucket theory mentioned as meaning you get too many exposures and become temporarily more reactive and have reactions to lots more things that weren't bothering you before, and then if you avoid your triggers for a while your bucket goes back to normal where you're no longer having symptoms triggered by everything, right?

How long until this bucket returns to normal for you guys? I can make some decent progress after months of avoiding triggers really well. However when you react to everything it's hard to avoid triggers long enough to make much progress. Right now I still react to almost everything and can't go anywhere, not even in my yard most of the time.

In the past, after a few years of avoiding triggers really well I started tolerating most things again and could then work and go places. But over 3 years ago I became more sensitive than ever and it's been really hard to make any lasting progress this time. My months of slow progress keep getting reset by a few days of frequent exposures.

For me the short-term symptoms from a trigger is a trivial concern compared to it making me more sensitive. That's what I fear. I could easily live with having my day ruined and then going back to normal the next day. I'd love that. What's scary is when having a bad reaction to something unrelated could mean I can then no longer use my covers in the winter or my soap to bathe or can no longer even go into my house and yard without reactions that keep me mentally incapacitated.

Though until very recently I was completely unmedicated so I guess if you're taking mast cell stabilizer meds your bucket may return to normal faster. I've only tried Benadryl so far though.

Yeah I was going to try Zyrtec, Allegra and Claritin soon. I know I've seen Zyrtec and Allegra mentioned by you guys before, but is Claritin a good one to try too? I'll try a new anti-histamine hopefully within a few days after my GI recovers from a supplement I tried. I was just wanting to know which ones seem to be best tolerated inactive-ingredient-wise.

Though I do have a list of ingredients that I do & don't tolerate so I'll factor that in, but just wanting to get someone's opinion on a good specific product to try. I think I want to try Claritin but not sure if cornstarch and lactose monohydrate are common triggers. And I think Zyrtec Antihistamine 10 mg Liquid Gels may be a good one to try. Though I'll have to bust it out of the gelatin capsule since gelatin seems to be a problem for me.


I don't tolerate Zantac, unless it's one of the inactive ingredients that's really the problem. But it was making me burp and the air from that burp burned my nostrils. Not sure what is going on there. But I have my GI under control without any meds just by having a very limited diet so I guess I don't really need an H2 anti-histamine.

And yes the benadryl has still been making me drowsy even though I've been taking one 25mg pill about 2-4 times per day for 6 days. I thought it would stop having the drowsy side effect after the 3rd day from a study I read. Oh well I guess that's good and I can use it as a sleep aid.

Hi Bruce,

Until mast cell researchers understand how they can "reverse" the damage that is done when we release our mediators (if and when that ever happens), we need to be on a regiment of H1 AND H2 antihistamines.  

If we do not take these medications, we increase the inflammation in our body.  I think most of us (myself included) focus on the reactions we have and tend to neglect the importance of the mediator release cause and effect.  Obviously, the more mediator release, the more symptomatic we are and the more inflammation we may end up with.  Some things I have read lead me to believe that researchers do NOT know if those who have MCAS sustain damage to organs, tissues, etc. like those who have SM do.  Until they understand that and more, I will take my antihistamines!!

When my mast cell specialist talked to many pharmacologists, it was their opinion that Claritan and Pepcid are the two blockers that have the least interactions with other medications.  For someone like myself, who is on a lot of other meds besides mast cell meds, that is really important.  For you, it may not be as critical.

The fact that you mentioned gel caps causing reactions for you, makes me think you may be more reactive than someone else that has a mast cell disorder.  Because I have severe reactions to both lactose monohydrate and cornstarch and gel caps and sugar substitutes and dyes and on and on....I can't take either Zyrtec or Allegra.  Zyrtec contains lactose monohydrate.  For my body, lactose is lactose no matter what form it is in..  Allegra contains something called Xanthan gum which is actually is fermented lactose....ugh....  It also contains sucrose (sugar substitutes can cause reactions in many of us as well) and it contains dyes and flavorings.  Both of these H1 blockers can NOT be compounded.  

Unfortunately EVERY one of us are different.  So for me or any one else to tell you to take a specific blocker could be dangerous.....but on the other hand it could be the perfect drug for you.

I am glad you have a "trigger list".  I know that  I would never have known why I ended up in the ER when taking prednizone (it contains lactose monohydrate) if I didn't keep track of every med that I have had a reaction to.  If you know you don't tolerate gel caps, you already have started that nice long trigger list!  It is interesting to me that it can be just the "little things" that actually fill our bucket!!

You mentioned that you don't feel you need an H2 blocker because you don't have the GI issues.  It is my understanding that we need BOTH because when the mediators are released, they attach themselves to both H1 and H2 receptors so you will not stop your reactions if you don't cover both receptors.  These mediators can also "loop back" and land right back on the mast cells that just released them and cause a "double wammy" so that is another reason you need to take both.

I have NOT been able to establish and H1 blocker and have been trying for almost two years.....so my symptoms are never well controlled and I have not been able to add any new foods to my diet in over 1 1/2 years.   I do take cromolyn and just started Ketotifen.  I am hoping once established on the Ketotifen, I can settle my mast cells down enough to introduce an H1 blocker.  The best thing the mast cell stabilizers have done for me is to stop the awful bone pain and the constant fatigue.  But....we are all different.

I know this post is long....but I think it is important that we take into account that we ALL PRESENT DIFFERENTLY AND REACT DIFFERENTLY.  

When I try a new med, I put a pinch inside my cheek (thanks Ramona) and I will know within 5 minutes if I can tolerate it or not.  Just a thought.  OK?

I hope this somehow helps.  Remember....no one knows their own body as well as the person that's in it!

Best of luck to you...

p.s. I get my medications compounded and open the clear capsules and dump the contents into food or water.  Works the best (for me anyway).

Thanks for the correction Kat.  I WAS referring to the liquid form of Allegra and I meant to look at the tablet.  And yes, you make an excellent point in pursuing all forms of a specific medication before "abandoning" it.  

(I think) my original intention in my post is to make those who are not established on a regiment of medications, to be VERY aware of even the "little" things in medications that can cause us to react.  I know when I first started on new medications, I couldn't understand why I couldn't tolerate any of the forms of Allegra or Zyrtec. I thought...well, maybe I really don't really have MCAS.  When it seemed like a "given" that everyone else seemed to be able to take these meds and I couldn't, it didn't make sense that I could actually have the same disorder that they did.

Two years later, I now know that we are all very unique indeed.   Unfortunately for some of us (and again this is VERY individual) react to the binders and fillers in medications as well.  I went back to my personal "notes" to see what I listed as triggers in the name brand form of Allegra.  It was actually four of the inactive ingredients; microcrystalline cellulose, pregelatinized startch, magnesium stearate, and polyethylene glycol.  I have gone so far as to have my compounding pharmacist send me a capsule of "plain" microcrystalline cellulose to try because I was told it was "too benign" to react to.  Well....I reacted to it.  

IMO, I think it is also important to note that sometimes we can be so reactive that nothing seems to work and then at other times we can tolerate things (meds, foods) we couldn't the month before.  There are sooo many variables.  So...for those of you who are trying new medications, go very very slow!  Also, keep VERY good notes on what you took and how you felt. And as Kat said, read the labels carefully and research everything you can get your hands on!

p.s. I was reading sucrose and thinking saccharine...thanks for that correction too, Kat  

Ok I just tried Zyrtec tablets 5.5 hours ago, and no GI reactions at all, no drowsiness, but I did have my signature reaction symptom: pressure behind my ears. As well as the pressure in the top corner of my head almost progressing to a headache. I also got lightheadedness, neck weakness and mild brain fog.

But the last 3 symptoms may have been from going so long without eating since I ran out of food last night and waited almost 3.5 hours after taking the Zyrtec before eating. And my signature reaction, pressure behind the ears, I was getting from the air in my room before I took the Zyrtec. The neighbors were going wild with mowing and weed eating today and some smell got in my room, of maybe flowers. I felt better when I'd seal myself up under my covers and the symptoms would come back when I'd leave the covers. So not sure if the Zyrtec tablet contributed to my symptoms at all.

I tested the Zyrtec on a bad day. I was just eager to try it. I can never change just one variable at time to ensure I know the trigger. It seems it's ambiguous half the time these days. I either have to avoid all the possible things that changed that could have been the trigger or risk likely more reactions to figure it out.

I'm concerned that I will react severely to an anti-histamine, but the anti-histamine will block 90% or more of the reaction itself is causing and making it hard to realize I don't tolerate it and then when it leaves my system I'm then like 2X more sensitive to everything than before trying it. Do you guys know the first time if you tolerate anti-histamines or can they block most of the symptoms at first making it take a while to figure out?

I'm not sure it's worth trying the Zyrtec again since even if it didn't give me any symptoms it didn't stop me from getting them either, even up to 5.5 hours which is where I gave up on it and took 2 benadryl which seem to be helping since my symptoms have mostly disappeared now. Unless that light flower smell was just a super strong trigger for me and Zyrtec blocked most of it.

Also do you guys have some things you ingest not cause GI symptoms but do still cause other symptoms such as headaches, brain fog or hives (though I never get hives, except got itchy and tingly feelings on skin out in sun maybe 3 or 4 times and it wasn't even hot outside). Most things I ingest only cause GI symptoms, except for I think high histamine foods which seem to cause mostly only my non-GI symptoms.  Just wondering if that makes sense or if maybe I'm mistaken about some meds causing only non-GI symptoms for me. It's hard to be 100% sure it couldn't have been a coincidental exposure to another trigger you didn't realize.

So does it sound like I should give Zyrtec a second try under more controlled conditions or just try Allegra now? If there wasn't the high risk of chronically exacerbating my condition I'd try stuff all the time. It's a little scary testing stuff for me.

Britt wrote on 05/22/13 at 13:50:53:


For H1s and H2s I'm currently taking 300mg ranitidine (2 name brand Zantac) THREE times a day, for a total of six pills a day.  I also take one Allegra THREE times a day.  I'm still not stable, but at least I can take a shower without wanting to scratch my skin off!

Thanks for the all the replies everyone. And thanks a lot Deborah for helping me plan this out.

My symptoms are no longer the same intensity and duration from all triggers like they mostly used to be so since I don't know how badly I would react to strong grass smell I couldn't be sure that Zyrtec didn't contribute to those symptoms. And it's good to know it can take premedicating for a while to get best results. And I have retaken Zyrtec many times and it seems to be well tolerated and seems to help.

I took a break from meds for 3 days though because I seemed to get increased GI reactions to my beans (heartburn), and wasn't sure if the meds were filling up my bucket and making me react to beans, but it seems that the heartburn was actually triggered by me moving around, lying in certain ways, and bending over.

So I resumed taking Zyrtec yesterday and will resume benadryl today which I just now got delivered. I've been out several days because my town doesn't have it and I had to order it online.

Stress isn't really an issue for me despite my bad situation. I just don't have the lucidity most of the time to feel much stress. Though I still had to make a little effort to suppress my apprehension so that I wouldn't risk screwing up my test of Zyrtec. I took it and occupied my mind with something else. Now I feel comfortable taking it.

I read this message the first day but wanted to wait until I had more to report back with before replying. I still need to test these meds a little longer to be sure but it's looking good so far. Thanks again.