Welcome!! So glad that you found us! There are so many knowledgeable and helpful people here. Please feel free to chat and ask questions anytime!

Nice to see you here too Marcia! I hope you can get into see a mast cell doc to optimize your health

Marcia,
Welcome, I am glad you found us!  A couple of things stood out to me in your intro. You should look into IC.  Interstitial Cystitis/Painful Bladder Syndrome is caused by...drumroll please...Mast cells!!  I had this and it was misdiagnosed as a kidney stone, as the pain can radiate to the kidneys.
BBQ is so tasty and so bad for those of us with mast cell issues!  Probably about 90% of the ingredients are mast cell degranulators, meaning they are true trouble makers!!
Sounds like you are on the right path and good luck as you continue to heal!
Pam

Hi Marcia, AKA Dizzysillyak,

I'm also on DINET and we have chatted there several times.  I'll look for you on those other sites.  Welcome to this forum, I know you will find lots of information here to help you understand the mast cell perspective to your health issues.

It took me years to figure out that inactive medication ingredients and food additives are some of my worst triggers, and have triggered anaphylaxis numerous times.  I react horribly to MSG, aspartame, FD&C Yellow #5 (also known as tartrazine), FD&C Red #40, sulfites, parabens, and others.  This has prompted me to tune in to inactive ingredients in meds and food additives.  

When I first started on antihistamines, I gravitated to the generics, then over time started putting all this together when I began to research each of the ingredients listed as mast cell degranulators on various websites.  

I could take white pills, but the minute my pharmacy changed my meds to a generic and it was yellow, I would react horribly.  It wasn't until I learned about synthetic dyes, then connected them to azo dyes listed on various mast cell sites as a common degranulator, that I figured out that the FD&C or D&C dyes listed in meds and foods, most comon in less expensive products are issues for many of us with mast cell disorders.  Yellow #5 is well publicized as a trigger for asthma, and mentioned in the IBS and IC publications.

Yellow #6 is made from Yellow #5, so you may want to avoid that one too.  I avoid all of the FD&C dyes in my foods and meds and have been working on getting them out of my personal care products.  I no longer use red pomegranite shower gel, but choose a clear, scent free gel.      

I've briefly looked over the ingredients in your meds and found quite a few which are known degranulators, which I have highlighted in red.  

Walzyr and other generics for cetirizine that I've looked at all contain FD&C Blue #1.  The Walzyr also contains PEG, which is an alcohol, is also a common degranulator.          

Children's Benadryl Allergy Liquid: Citric acid, D&C red no. 33, FD&C red no. 40, flavors, glycerin, mono ammonium glycyrrhizinate, poloxamer 407, purified water, sodium benzoate, sodium chloride, sodium citrate, and sugar.

In case you were thinking of looking into the dye free version ...
Children's Benadryl Dye-Free Allergy Liquid: carboxymethylcellulose sodium, citric acid, flavors, glycerin, purified water, saccharin sodium, sodium benzoate, sodium citrate, and sorbitol solution.

If you find that your "bucket" is full and want to change out these meds, consider checking into brand Zyrtec tablets or Zyrtec liquid gel capsules.  Dye free Benedryl liquid gel capsules and Walgreens dye free diphenhydramine liquid gel capsules have the identical ingredients as the brand, but is cheaper.  None of the above products has any of the dyes that are known triggers.  

The zyrtec liquid gels are corn-free, gluten-free and lactose-free, but does contain PEG and sorbitol, sugar alcohol as the last ingredient.  I have yet to find a cleaner version of a H1 that works for me.  I also take hydroxyzine at night to clear brain fog, as it crosses the blood brain barrier and plugs the H1 receptors in the brain.  

Allegra, and Target generic fexofenodine and Sam's club versions all have various oxine dyes, which is considered more "natural" and far less toxic.  but those three also contain lactose, in case lactose is an issue for you.    

I've read about mast cell patients who react to lactose, dyes, alcohols, citric acid and other ingredients, so keep that in mind if your symptoms warrant the attention.  

Best wishes on taking your journey down the mast cell pathway.  
Lyn                                                                            

Joan,
I don't use the fast melts or liquids as they are all loaded with additives known to degranulate.  At one point I did look for disolving rates for zyrtec tablets and the liquid gels, but couldn't find any scientific information.  

Several years ago, a pharmacist told me that ibuprofen gelcaps typically work faster than ibuprofen tablets, so I am going off of that concept.  When I'm shocking, it takes only a few minutes for the dye free diphenhydramine gel caps to settle down my massive eruptive 'Big D' or stop my projectile vomitting.  

I take the regular zyrtec tablets as scheduled meds, the Zyrtec liquid gels for breakthrough, and dye-free diphenhydramine liquid gels for emergencies.    

I do get nervous about taking oral meds when I'm vomiting.    I read that in the hospice community, they often use Benedryl gelcaps as suppositories or vaginal inserts.  Compounding pharmamcies will even mix a blend of compazine, Benedryl and another med to use on end stage cancer patients.  Alternative routes of administration are my Plan B, if the Benedryl gel caps doesn't work fast enough orally.      

And oh, the Zyrtec commercials this past summer stated that zyrtec works much faster than Allegra.  I read somewhere Allegra tablets can take between one and two hours to start working.  

I don't know if putting the meds in water and seeing how fast they disolve in water is accurate to test dissolving in the stomach.  I read that this is a myth and not helpful when assessing vitamins, as the stomach pH is between 2-2.5 and water is around 7.  I suppose you could try doing it in some vinegar?   Let me know if you perform some kitchen chemisty.  

Take care, Lyn      

It's hard to know what the pH is in our stomachs with the kinds of meds we take, so I suppose we have to go by personal experience.

Allegra does take longer than Zyrtec to begin working.  Be careful about compazine.  It's not recommended for mast cell patients.

At the hospital, I found that IV Benadryl contained a preservative, but the injectable didn't.  

Marcia,
Glad to her about your extra boost of energy with those products.  I am in no way trying to sway you off of any meds that are working for you.  

I just wish there was something out there alerting me to additives.  Everytime I suspected additives I couldn't find anything to back it up, at least not until I began dissecting the various lists of degranulators and  inactive ingredients in my meds, foods and personal care products.  It wasn't until I began stripping away these additives that I could unravel my symptoms.  I now know I was having low grade anaphylaxis everyday, with occasional bouts of higher stage anaphylaxis.  Eliminating these known triggers helped me out of that pattern, where my reactions would have a beginning and an end.  

In case this may help you, here is the list of ingredients in the Target dye free liquid elixir.  
anhydrous citric acid      Causes Direct Histamine Release
carboxymethylcellulose dosdium      
flavors                      Mast Cell Degranulator
glycerin      
potassium citrate      
purified water      
sodium benzoate      Mast Cell Degranulator
sorbitol                      Sugar Alcohol=MC Degranulator
sucralose      

If those ingredients don't cause an issue for you, then you are good to go. Just keep this in mind as you move through your own journey.  

There are multiple lists of degranulators out on the web, some better than others.  I have yet to find a comprehensive list explaining each of these ingredients, but I am compiling a spreadsheet of my own encompassing it all.  

Meanwhile start with 1) TMS Emergency sheets 2) low histamine diet from the urticaria site and 3) degranulator list from www.Mastokids.org site.  giving you a good start.  On www.TMSforacure.org, you'll find 2 solid sources.  One is a blue emergency room trifold pamphlet and the other is a list of meds to NOT take in their Emergency Files.  

Happy reading,
Lyn