Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  YaBB is sponsored by XIMinc!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
New here. Actually trying to convince myself not MCAD (Read 5116 times)
yogimama75
Rookie
*
Offline


I Love YaBB 2!
Posts: 4

New here. Actually trying to convince myself not MCAD
01/11/16 at 08:43:46
 
Hi All,

Thanks for letting me join. I have many questions.   I have been pouring over information over the last month and am overwhelmed. My doctor said not likely a Mast Cell disorder, and I do trust my doctor. He ran Serum Tryptase, Chromagranin A, Urine nmehtylhistamine, urine prostaglanin d2, and urine 5 HiAA.   This is my allergist. All tests are negative (and I know that many have false negatives). Strangely, the lab accidentally ordered blood Prostaglandin D2 which came back positive at 186. My dr had no idea how that happened and is not convinced it means anything but is looking into it and getting back to me.  I have a question about this test that I will post later....

Anyway, my troubles started back in November. Early November I had an oral allergy reaction to something. That makes sense, I have many environmental allergies.   a few weeks later I flushed one night, face and ears and my face got itchy. I assumed  it was my rosacea as I have not been using my meds for that for a couple of years due to preganncy/nursing.   Anyway, I thought maybe I felt swellign in my lip but saw nothing. I got scared and saw my allergist and he put he on high dose zertec.  I got dry mouth which they weren't sure it was itching (I can't explain it) and assumed zertec wasn't working. I was put on allegra 2xs a day. same problem with flushing (really at night mostly) and mouth stuff seemed worse. I thought it was probably just side effect due to dry mouth. But I got racing heart at night from allegara to stopped taking it. Seemed my mouth was getting better but once I stopped meds I started getting rashes. Anyway. STarted clairitin, regular dose. No mouth improvement (neither with bennadryl). Flushing didn't seem effected. Still happened at night (started eating earlier to separate the two and still flushed between 6 and 8.   After a week or 2 on clairtin I got racing heart during day. Dr said to stop meds and see it was the meds... it was. So been off meds. Flushing is better for most part (I also started rosacea treatment so no more itching on face and not as red).  My normal rosacea triggers cause flushing (spicy foods and probably soy sauce).   My ear may turn red on occassion.  Off the meds the rashes came back. But over time have gotten better (not as frequent).  

Dermatologist not concerned. Allergist not concerned. I want to believe them.But I get scared having read so much.  For a few days I had no mouth symptoms until this morning... now I was stressed with the week starting (and eating alone as my husband is home all day on weekends) AND the house is super dry.    

Oh, we also had mold in our basement and it removed Mid December (we could smell it in living area though spore count not high there, I am allergic to mold).   Also, a couple of weeks before the flushing I bot bit by I assume a spider...30 bites! I wondered if this was my body just working through that...dr didn't think so.

I do have SVT...but my racing heart on meds was not that...different pulse..my SVT goes to about 160, this was about 90-99 (which feels like racing to me).

I was very active until this...now I am just scared and lost weight due to restricting foods (which did nothing) and just think I made myself worse. I used to run a ton (like I was getting ready to train for my 4th half marathon). I also (sorry) Have vocal chord dysfunction (diagnosed by symptoms not seeing it) which I felt comfortable as a diagnosis until all this happened. Though my Vocal chord episodes to not correspond with flushing or rashes or any of that. and the exercises for that seem to help 50% of the time, which they said it about right.

So, that is me and where I am.   Thanks for reading even though it was  rambling.

Smiley
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: New here. Actually trying to convince myself not MCAD
Reply #1 - 01/11/16 at 15:51:48
 
Welcome to the forum, Yogimama.  It sounds as though you are trying all the right things, and your doctor did the tests to rule out other causes of flushing.  That's good!  However, you're having trouble finding an H1 antihistamine that doesn't cause your heart to race, and you haven't found anything to help with the flushing.  (Correct me if I don't have that right.)

I have several thoughts.  H1 antihistamines are helpful if you're having anaphylaxis, but they might not resolve every symptom.  If your PGD2 is high and you're flushing, you might want to try a medicine that blocks prostaglandins and see if it helps.  For me, an extra strength Tylenol (500 mg) stops the flushing symptoms (also cheeks and ears) I get when my mast cells degranulate.  If you can tolerate salicylates, aspirin might be a good choice instead of Tylenol, as it also blocks prostaglandins.

Sometimes H2 histamine blockers, such as Pepcid or Zantac, are helpful for a number of mast cell symptoms.  Most people take 20 mg. Pepcid or 150 mg. Zantac, twice a day.  Some people take double those amounts.  Do check with your doctor before you try any new meds.  Don't take more than the recommended dose of Tylenol, as it can damage the liver, especially if taken when you've had alcohol.

Another medicine that was helpful to me when I first became I'll with this, is doxepin.  It is both an H1 and H2 antihistamine.  It also helps to relieve stress and will get you into stage 4 sleep if that's an issue and if you take it at night.  It requires a prescription.  You do try new meds only when someone else is around, I hope.  

Finally, do you carry Epipens or the equivalent?  If you've had anaphylaxis, you should carry at least 2.

Different doctors believe differently about what a normal tryptase level is.  The labs usually say up to 11 is normal, but some experts in mast cell disorders believe that anything higher than 1 is abnormal.  

You have had exposure to a number of things that can cause mast cells to function abnormally, e.g., exposure to mold and spider bites.  Stress is the biggest degranulator for most people, and who doesn't have stress!

Have you tried an actual elimination diet?  There are many out there.  I like the low histamine diet, because it eliminates foods that are naturally high in histamine as well as those that actually can cause mast cell degranulation.  Essentially, you stay strictly on the diet for at lest 10 days.  Then you add back in foods, one at a time, every 2-3 days.  Usually people react very soon after adding a food, so it's apparent which one is causing a problem.  The diet I like is on this website:  

http://chronichives.com/useful-information/histamine-restricted-diet/

I get vocal chord problems from time to time.  Don't know why, but think it might be GERD, too.  Don't know what to do about it, unless it proves to be reflux.

If you have specific questions, feel free to post them.  If you feel your doctors have not adequately diagnosed you, check the listings on here about competent mast cell disorder doctors.
Back to top
 


Joan
 
IP Logged
 
yogimama75
Rookie
*
Offline


I Love YaBB 2!
Posts: 4

Re: New here. Actually trying to convince myself not MCAD
Reply #2 - 01/12/16 at 02:11:27
 
Thank you Joan!  

Yes, that pretty much is what is going on.   My flushing is much better since this started though. It doesn't last super long.... 10 minutes...so not sure taking Tylenol would help, unless you mean to take it preventatively?  When this started I did have some episodes where the flushing (cheeks, nose, ear) lasted longer...like an hour.   My other problem is my mouth sensations...can not really describe...scratchy? burning? not really itch....so assumed is dryness....no clear cause in terms of food.

At first I eliminated histamine foods (I used to eat a lot of them...fermented foods, avocado..etc)... I ended up elminitating almost everything (seriously my diet was limited). No leftover meats, or any leftovers for that matter (Unless I froze immediately). So my diet looked "ok"... didn't change anything. Well, I lost weight.

I tried to stay hydrated as that was suggested as a factor causing racing heart. I will check out a calculator.

I do have 2 epi pens... though dr is not concerned that I need them (a different dr prescribed based on my 1 episode of swelling lip with oral allergy).

My tryptase was 3.1. I did ask about the idea that it shouldn't be over 1... he wasn't concerned.  It is hard because I know many online say what you s



I guess I wonder, could the things like mold and spider bites trip up anyone, even if they don't have a MCAD??


Yeah, my vocal chord problem is hypothesized to be related to gerd, I have had gerd problems in the past including silent reflux. Also may be environmental allergen related.   I did get exercises to help...so just FYI..there are things one can do with that diagnosis!  


Thanks again!
Back to top
 
 
IP Logged
 
peter
Mentor
****
Offline


I Love YaBB 2!
Posts: 294

Re: New here. Actually trying to convince myself not MCAD
Reply #3 - 01/12/16 at 09:58:41
 
I do have 2 epi pens ? do you keep your epis with you when you go out
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: New here. Actually trying to convince myself not MCAD
Reply #4 - 01/12/16 at 17:06:51
 
I know of cases in which people have over-reactive mast cells for a period of time from an exposure to something, such as mold or a virus or an insect sting, and then they settle down.  I wouldn't worry right now about a tryptase of 3.  It can be elevated because of mast cells degranulating, not necessarily because there are too many of them.

If your symptoms continue to subside, that would be great.  I would still carry emergency meds with you unless all your severe symptoms go away and you aren't having flushing anymore.

I would take something to block PGD2 as soon as the flushing starts if you get increased inflammation, rash, or pain after a flushing episode or if you are getting any type of swelling of your face, lips, tongue, or neck.  Also would take an H1 antihistamine, if there's one you can take.  Since you aren't sure what's triggering these reactions, it can't hurt to keep meds with you in case you're exposed to something.  If you think you're sensitive to salicylates, check with your doctor about which pain reliever to take.

I would imagine the mouth sensations are part of this same thing, but don't know for sure.  

Anyway, it does sound as though you are having some mast cell activation, but it's hard to know if you'll continue to have it in the future.  Hope it just goes away over time!
Back to top
 


Joan
 
IP Logged
 
yogimama75
Rookie
*
Offline


I Love YaBB 2!
Posts: 4

Re: New here. Actually trying to convince myself not MCAD
Reply #5 - 01/14/16 at 02:59:31
 
Joan wrote on 01/12/16 at 17:06:51:
I know of cases in which people have over-reactive mast cells for a period of time from an exposure to something, such as mold or a virus or an insect sting, and then they settle down.  I wouldn't worry right now about a tryptase of 3.  It can be elevated because of mast cells degranulating, not necessarily because there are too many of them.

If your symptoms continue to subside, that would be great.  I would still carry emergency meds with you unless all your severe symptoms go away and you aren't having flushing anymore.

I would take something to block PGD2 as soon as the flushing starts if you get increased inflammation, rash, or pain after a flushing episode or if you are getting any type of swelling of your face, lips, tongue, or neck.  Also would take an H1 antihistamine, if there's one you can take.  Since you aren't sure what's triggering these reactions, it can't hurt to keep meds with you in case you're exposed to something.  If you think you're sensitive to salicylates, check with your doctor about which pain reliever to take.

I would imagine the mouth sensations are part of this same thing, but don't know for sure.  

Anyway, it does sound as though you are having some mast cell activation, but it's hard to know if you'll continue to have it in the future.  Hope it just goes away over time!


Thanks again!! All good to know! My doctor is actually checking with a specialist (about the blood test) at the Brigham, so that is good. Hopefully I will hear back soon. I did end up with a small area of swelling on my face last night out of nowhere (skin colored, 1/2 inch by maybe 1 inch line). Freaked me out as I was away from home and at this point don't know what I can take, or if I should. Waiting to hear back on that too.   Not a fun time with all this.  I dare say flushing has been better...fingers crossed.

Thanks for all the info!!
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: New here. Actually trying to convince myself not MCAD
Reply #6 - 01/15/16 at 19:48:15
 
Hope you get some answers soon.  It can be really unsettling having these things happening in your body and not knowing why, but that should get easier with time and more information for your docs.

Good luck!
Back to top
 


Joan
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print