Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Hello looking for answers! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350574819 Message started by Gumby on 10/18/12 at 04:40:19

Title: Hello looking for answers!
Post by Gumby on 10/18/12 at 04:40:19

Hello All!
I am new to this forum so please forgive any ignorance on my part. I have Ehlers-Danlos Hypermobility type just recently diagnosed and thought I had multiple food and drug allergies. Not so. After much confusion and being told by my PCP that I may have anxiey or depression ( really funny since I am a 2 nd year grad student in counseling:) that there must be something else cause my throat tightening, hard to breathe, abdominal pain diarhea 10-20 times a day, face flushing swelling, hives, rashes etc. i stumbled onto Mastocytosis and MCAS on another forum and asked my to have my tryptase drawn- was 4.5. Long story and 2 allergists later I have an appointment with Dr. Afrin Nov. 26. I have put my self on Z& Z which has helped but I must not be well controlled enough because I still am having GI problems off and on. Rashes, hives and angioedma in face and throat are better but I still can't wear make up without my eyes swelling the next day. Lots of my reactions seem to be in a time delay. Not sure if this is normal. Allergist # 2 was recommending a BMB which is why I decided to see Dr. Afrin. With the little I know a BMB seemed a bit over the top for a tryptase of 4.5. In an email Dr. Afrin agreed. I need help now as I think it is making my EDS worse. Any help or tips are appreciated!
Gumby 8-)

Title: Re: Hello looking for answers!
Post by PamH on 10/18/12 at 12:21:01

Gumby,
Welcome! I am glad you found us!
It sounds like you are on the right track. I was told the same thing, an immediate care doc. said that i had anxiety! I was having anaphilaxis!
The advice I would give you off the bat is to read! Read the threads on the forum, even if you don't think they relate to you! I know the docs are experts in their fields, but we are living it, so there is much you can learn from the people on the forum!
Good luck,
Pam

Title: Re: Hello looking for answers!
Post by Joan on 10/18/12 at 13:11:02

You are on the right track, IMO. You might be reacting to a preservative in your make-up. Delayed reactions are not uncommon. I have them. I believe they can be up to 72 hours after exposure to a trigger.

If you post your medication dosages and schedule, people might be able to comment. It sounds as though you might be under-medicated if you're having breakthrough symptoms. There are many H1 and H2 antihistamines, and if I get breakthrough symptoms or feel I'm not well-controlled, I add an additional one or both. Mast cell stabilizers are very helpful for a lot of people, too, such as Gastrocrom or Ketotifen.

Your allergist(s) would be best people to discuss the possiblity of taking more antihistamines. They can look at your other meds and history and tell you what's safe for you.

Title: Re: Hello looking for answers!
Post by Anaphylaxing on 10/18/12 at 16:31:24

Welcome and sorry you're here

We're similar in that I also have a normal tryptase and am not having a BMB since it wouldn't change my management. MCAS docs agreed with this but non MCAS masto docs had wanted to do one. As I'm sure you're finding, you'll encounter many opinions.

I stopped wearing makeup, unscented all my products and use as few as possible and went on a low histamine organic rotation elimination diet to try and sort out my triggers. Keeping a diary can help. It is getting much easier to figure out what I'm reaction to now, but was a hot mess (literally lol) at first.

Good luck and am so glad you are going to see and expert

Ana

Title: Re: Hello looking for answers!
Post by Gumby on 10/30/12 at 04:31:57

Thanks All!
I am taking 10 of Zyrtec am & pm and 150 of Zantac am and pm and benadryl as needed.
Ann, where did you find the elimination diet you are on? I tried one on the chronic uticaria site and still had trouble. Found I could only eat like 5 things. I went rouge this weekend and ate almond shrimp at my favorite Chinese place and between that and the weather I can't walk my foot and knee pain is so bad! Headed off most of the and throat issues with benadryl. Bad, bad idea :'(. Know one around here believes in MCAS. So I am on my own until I see Afrin. I will then have data to convince someone I hope!