Mast Cell Disorders Forum - I finally did it!

05/18/24 at 12:46:53

	Welcome, Guest. Please Login
	YaBB is sponsored by XIMinc!

Home

Help

Mast Cell Disorders Forum › General Mast Cell Disorders Discussion › Medicines › I finally did it!

‹ Previous Topic | Next Topic ›

Pages: 1 2

I finally did it! (Read 9224 times)

PamH

Mentor

Offline

Posts: 447
Indianapolis, IN USA

Re: I finally did it!
Reply #15 - 07/23/13 at 03:31:20

Brigette, JUST THROWING THIS OUT!!! Have you looked into sals? Most of the things that have fragrance that you listed have sals in them...Salicylates are nasty little chemicals, they are actually the plants natrual defense to the environment! Anything that is made of plants contain some salicylates. I have read that it is best to do a low salicylate diet opposed to a sal free diet, because when you add them back in, it can cause reactions. Sals are catagorized in neg., low, moderate, high and very high. A good rule of thumb- all spices are VERY High! An important thing to remember with sals...they stack up, people refer to having a bucket that gets full and then dumps and triggers. You are not necessarily highly allergic to the thing that "dumps your bucket" , but more of a you had all your body could take that day effect! This makes identifying the problem crazy hard. Because on Monday you may have reacted and Wed you reacted but ate totally different things! So the best thing would be to start on the low sal diet (diets are horrible) and see how you feel. I have read it takes awhile to get all the sals out of your body, you would have to research and figure out when you are comfortable in adding sals, when you do that you only want to jump to the next cat. which is moderate, then high on to very high. If you get to very high and have no problems, I think you are not sal sensitive and you can rule it out. If you do have a problem, you will need to drop back down to the catagory that works for you. I can have moderate and on a great day high! Very high still causes me anaphylaxis! (but this is better than it was) I have also started Singulair which is supposed to help with sal. problems. Just like histamines can cause mast cells to degranulate, sals can to in some people, I don't think they know why or they could have fixed it by now! Salicylates are listed on the Mastocytosis CA site under foods. Bottom right hand side. http://www.mastocytosis.ca/symptoms.htm

Pam

IP Logged

Britt

Mentor

Offline

I Love YaBB 2!
Posts: 327

Re: I finally did it!
Reply #16 - 07/23/13 at 06:07:37

Thanks ladies. I slept on it and decided to give it another go. I'm going to start with 1/4 vile instead if 1/2. This was "advice" from Dr. Afrin. I know it sounds crazy, but I do think what I was feeling last night was from the cromolyn, because it felt similar to how I feel when I'm about to have a panic attack induced by let's say laundry detergent. But as Dr. Afrin said, sometimes patients do have a mast cell reaction to cromolyn at first. Huh

But I'm sure another part of it was exasperated by anxiety.
Heather~I do suspect a sal sensitivity, especially inhaled sals and topical things like lotions. I have also figured out that tomatoes and garlic (which is actually low sal) are not good for me as well as chocolate, berries and orange juice. I'm still trying to figure out if nuts make me react. So I'm slowly trying to get rid of sals, although I know the best would be to do a sal free diet. I have also been avoiding spices.
Cromolyn doesn't contain sals does it?
I have also figured out I have a problem with anything petroleum based like in lotions, makeup, mineral oil. And of course, FRAGRANCES! Lol
Heather~do you take cromolyn? Has it helped you?
Pam~thanks for the good advice!

IP Logged

PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: I finally did it! Reply #17 - 07/26/13 at 02:29:24 Brigitte, how are you doing? I am hoping you were able to keep taking the cromolyn. I dont think cromolyn has sals. in it. I am very sals. sensitive and I am able to take it. Sending good thoughts your way!
Back to top	Pam IP Logged

Britt

Mentor

Offline

I Love YaBB 2!
Posts: 327

Re: I finally did it!
Reply #18 - 07/26/13 at 14:01:54

Thanks Pam! My experience with cromolyn has been strange thus far. I didn't take it today. My local doc told me to wait until I see Dr. Chin. I'm actually on my way there now! Road trip!!!! We're about an hour and a half into hour ten out drive Cheesy

. I'm really hoping we can make some sort of progress at this appointment. He has seen my labs for autoimmune urticaria. His belief is that I do have MCAS, and that autoimmune urticaria is only a piece of a larger issue.
I have a question. I did some labs at home prior to heading down. My tryptase was normal, my urinalysis was normal, my histamine was normal at an 8 with a normal range being 0-8. Since I take so many antihistamines everyday, is having an 8 high? Or normal? I also had several tests that were high for inflammation.
Thanks! I will keep you updated on my visit!

IP Logged

PamH Mentor Offline Posts: 447 Indianapolis, IN USA	Re: I finally did it! Reply #19 - 07/27/13 at 05:02:09 Not sure if anthistamines would mess up the testing or not...good luck on your trip and keep me updated!
Back to top	Pam IP Logged

Starflower

FORUM ADVISOR

Offline

Not a medical doctor
Posts: 715
Indiana

Re: I finally did it!
Reply #20 - 07/29/13 at 02:00:05

Britt wrote on 07/26/13 at 14:01:54:

... my histamine was normal at an 8 with a normal range being 0-8. Since I take so many antihistamines everyday, is having an 8 high? Or normal?

Antihistamines don't change the level of histamine in your blood, they just block your receptors... temporarily preventing further allergic symptoms.

Heather

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

IP Logged

Pages: 1 2

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page