Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Pages: 1 2 3 
Send Topic Print
Deborah's tips! How to avoid triggers (food, lifestyle, stress) (Read 22326 times)
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #15 - 12/28/10 at 16:38:41
 
(Archived from starflower  - original forum)
Hi Lori,

Welcome to the group!

Since you have other autoimmune disorders (I do too), you should get tested for auto-antibodies to your high-affinity IgE receptors.  That's the ONLY lab test that shows I have a mast cell disorder... even though my symptoms range from hives to nausea/diarrhea to full-blown anaphylaxis.  I've had biopsies of my bone marrow, skin, a lymph node, and upper GI along with tryptase, total IgE, tons of allergy tests (both skin-prick and RAST) and urinary histamine... all perfectly normal.

Heather


__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
27 October 2010 03:00 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #16 - 12/28/10 at 16:42:00
 
(Archived from lori612  - original forum)Hi Heather,
Thanks for the reply. I had a total IgE, autoimmune antibodies, complement C3 and C4, rheumatoid factors, anti-thyroid antibodies (to test for Hashimoto's) and a test abbreviated ANA (which I think is just for regular autoimmune antibodies) done by a rheumatologist over the summer who thought I might have scleroderma. All came back normal. Is the test you mention-- auto-antibodies to high-affinity IgE receptors different from the ANA test, do you know? It sounds like our symptoms are very similar. For me, it's very obvious when I'm about to get sick for a while because I start getting bad stomach pains and diarrhea. When I'm "healthy" I'm very prone to constipation- I eat more fiber than most people's grandmothers do. However, I go full force in the other direction when the mast cells go nuts and the hives come on. Interestingly, I've noticed a lot of other people get worse with exercise, but I (thank goodness) seem to improve a little, so long as I'm not in the sun. If I go running in the morning (a couple of miles), I find that it's almost as though I sweat out some toxins and the hives get better. This is also true on nights that I get 'night sweats' - I generally wake up with less hives. If I just get hot overnight and don't actually sweat, the hives get worse. At some point I should probably get a liver/kidney function test to make sure this isn't simply about buildup of toxins or malfunction of organs. I had a theory it was candida and even talked my doctor into giving me diflucan, which helped with the hives once in the past, but this time it did nothing to help. Ok, time to get ready for class. Thanks for writing back! It's always good to talk with people who truly understand what this is like!
Best,
Lori

28 October 2010 07:46 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #17 - 12/28/10 at 16:43:33
 
(Archived from starflower - original forum)
Hi Lori,

My ANA is sometimes positive (the highest has been 1:320), BUT... the test for "auto-antibodies to high-affinity IgE receptors" is a special test.  It will not show up in the standard tests for autoimmune disorders.  Most doctors do not know about it.  My blood sample had to be sent to National Jewish Hospital in Denver for testing (I live in southern Indiana).  Since you also have chronic hives... even if they're not very bad... I highly recommend getting on the ICUS list-serv and asking for suggestions of doctors in your area who know about this test.  (http://www.urticaria.thunderworksinc.com/)  I had to fire my first allergist... she misdiagnosed me with food allergies... that's how I found the second one! This test was the KEY to figuring out my mast cell disorder.  Here's an excellent article about it that you can take to your doctors: http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=article

Good luck!
Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
28 October 2010 11:04 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #18 - 12/28/10 at 16:46:26
 
(Archived from lori612 - original forum)
Heather,
Thanks so much for explaining the test and for the link to the article! I'll read through it, highlight some sections and bring it to the doctor I'm going to see on Monday. The hives are very severe and often keep me awake or wake me up overnight. I'm taking steroids daily right now. I also have dermagraphism (skin becomes irritated after I scratch it-- a lot of times turning into more hives). I've used the ICUS website as my bible to salicylate allergy and histamine-releasing foods to avoid. I will get on their listserv as well. I actually signed up for their Facebook page and learned a lot from folks and hopefully helped a few 'newbies' to hives on there. Thanks again for the info. It sounds like a lot of people are negative on many of the classic tests. Having a rare chronic illness requires you to do your homework thoroughly and to learn the terminology and tests and scout out good doctors. I might be in school for a PhD in environmental conservation right now, but I feel like I'm working on a medical degree too! Sheesh!
Best,
Lori


28 October 2010 01:02 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #19 - 12/28/10 at 16:47:39
 
(Archived from lisathuler   - original forum)Welcome to the crowd, Lori, about having to do med school while your studying another course!  Been there, done that and still doing it!!!   ha!    I was halfway through my second degree in education when I got the masto and I began doing "med" school in the midst of it.  My classmates began missing me while class was going on and they all knew where to find me - on the computer in the computer room researching!!!!   My doctors have each congratulated me and some of them have told me to do med school for I've got "what it takes" they say!  They say I'm half way there as it is but that I started it backwards with the disease first and not all the generalized stuff!   Haha!!  But hey, I'm getting my answers and with that some kind of control over my life once again!  This is what it's all about for it's our ignorance which puts us into danger and makes us fear and doubt and makes life pretty much MISERABLE!   With the knowledg we gain through our studies, we learn how to take care of ourselves and what our situations are and not to fear so much and with that, we regain a great deal of control again as well as peace of mind!  

So, Lori, STUDY ON SWEETY!!!   Get Two PhD's - one in masto as well!

Lisa


28 October 2010 02:11 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #20 - 12/28/10 at 16:49:00
 
(Archived from lori612   - original forum)
Lisa,
Thanks for the encouragement! I saw on an earlier post you have some anti-histamine allergies as well? I know categorically that they make me worse. I once was admitted to the ER for a bad case of hives and they pumped an IV full of antihistamines into me and I turned into a time-elapse video-- I got MUCH worse. All the hives clustered into mega-hives. It's a rare allergy, but it is possible. Now I avoid all H1 and H2 like the plague. It's funny, I never had much of an interest in medicine when I was a kid or in high school, but these days I realize I could have become a medical doctor. I hate the fact that anyone suffers with chronic illnesses.
Have a good weekend!
Best,
Lori

29 October 2010 09:45 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #21 - 12/28/10 at 16:50:31
 
(Archived from edubrovs   - original forum)
Hi,

I am a freshly diagnosed proud owner of the masto spots. I think I probably had this all my life so I am not sure if I need to get upset by something that was always there or not. After all, if I put a name to a condition I had since I was a kid and that has no real cure, then does it really make a difference? My story may be interesting because my entire life I always disliked alcohol. I also have a severe dislike for medicine and only take medicine of any sort if I feel like I am about to die... in speaking to my dermatologist she suggested that my behavior is probably what kept me out of hospitals.

In terms of triggers, I dont really know what that means.. I remember as a kid that I may have had an episode or two of what I like to describe as spontaneous expansion... quick trip to the hospital, a nice needle of anti-histamine and I was back to normal size.

I had a strange reaction to the sun...chronic bronchitis (at least what the doctors thought)..I was the only 10 year old with sunglasses...lucky for me Michael Jackson was IN... but joking aside.. I immigrated with the family to Canada and BOOM, everything went away. No alergy to the sun, no bronchitis all gone. Then a few years ago I started getting the spots..I thought they were a man's stretch marks as I was losing weight at the time. But it would seem the number of dots grew until a few weeks ago I went to the dermatologist, quick biopsy and I got me a shining new name to my condition.

So now, I am not sure what to do.. I got into triathlons and planning to do an Ironman. My dermatologist told me that exercising my cause me to go into enyphalectic (pardon the wrong spelling) shock of something like that and that I should be taking reactine or claritan on a daily basis... but I am resistant. Why would I do that all of a sudden? is it really necessary? I have not had a severe reaction probably since I was 8 or about 30 years ago... what do you folks think?

Now in terms of reactions..I can get itchy some times but normally more if I get hot and sweat (but normally during exercise), I can get itchy if I sit in a hot jacuzzi for a while.

I dont really know of any other triggers to my itchiness...at least not of the top of my head but it would seem that everyone is quite different...

My biggest issue is the spots in my mid-section and primarily on my side.

I dont really understand this disease but all I know is that I may have made the right choices instinctively by not drinking alcohols or smoking or taking over the counter pills every time I had a bit of a headache. I have even gone as long as 12 years in not seeing a doctor...

I have no intent of giving up cycling, running or swimming. I plan to complete my first IRONMAN within a year. Already ran a number of 1/2 marathons. Slowing down is not an option here this condition is something that I have been living with for years or perhaps all my life and given that it has no cure, why should I change?

Looking forward to your comments and suggestions..and if anyone else on here is quite active as well I would like to know how you cope.

I also heard that this thing can be internal/external etc.. No idea what I have, I still have to do the blood test (finding a clinic that does this test in Canada is a bit of a challenge..). All I know if that when I am running, I feel good and I am beginning to listen to my body since it obviously knows better than I what it needs...

Cheers,
Ed  

29 October 2010 05:51 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #22 - 12/28/10 at 16:52:31
 
(Archived from jillg  - original forum)
Hi Ed,

You might find this link to the Canadian Mastocytosis forum of use to you:

http://cmsadmin.proboards.com/index.cgi?board=paypal&action=display&thread=8...

If you get itchy when exercising, then I would weigh in on the side of taking an antihistamine.  If you do have a reaction, you can go into anaphylactic shock which can be life threatening.

Good luck on that ironman!!!!

-Jill

29 October 2010 09:00 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #23 - 12/28/10 at 16:54:57
 
(Archived from lori612 - original forum)
Ed,
Here's my 2 cents: I've found that this problem manifests in very different ways for different people, and sometimes a trigger for one person helps another. For example, most people get relief from anti-histamines. They make me worse! MUCH worse. Other people find exercise makes them worse, but I find my morning run actually helps make the hives go down. I think it has to do with sweating out toxins. On the other hand, if I exercise in the middle of a hot, sunny summer day, the combo of sun and heat make me worse. Have you ever experienced an inability to breathe when exercising? Do you feel like your symptoms get worse when exercising in general or just when it's hot or sunny? Make note of these things. The doctor has to warn you that your symptoms could get worse with exercise, but you know your body best. What time of day do you feel worst/itchiest? Do NSAIDs (aspirin and ibuprofin) or other things that fall into the salicylate family (berries, tomatoes) make you itchy? This is a common trigger for mast cell/hives folks, myself included.  The other thing I want to say is I know exercise really improves my ability to cope with stress. If I couldn't get out my stress via exercise, I think I'd be even sicker because I'd be bottling all the bad stuff inside my body. For an extreme athlete like yourself, I'm sure you'd be even more lost without exercise. Maybe you'll need to modify what you do (if sun or water make you worse) but I don't think it would be good for you to stop altogether. Let's face it: this is a life-long diagnosis and if the things that make you happiest in life are off limits, you're likely to be just as miserable missing out on doing what you love as you would from being itchy (again, if you can't breathe, that's too dangerous and you must stop). For me, avoiding berries sucks, but it isn't worth the result of hives. However, hiking on a beautiful sunny day is worth that risk for me sometimes. Learn your triggers and pick your battles as you go, one day at a time. Good luck with the Ironman!
Lori.


30 October 2010 10:08 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #24 - 12/28/10 at 16:56:44
 
(Archived from lisathuler   - original forum)
Lori, that was a WONDERFUL reply!   BEAUTIFULLY SAID!!!


Lisa

30 October 2010 11:17 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #25 - 12/28/10 at 16:58:17
 
(Archived from jysmith - original forum)
There used to be a drug called "Intal" on the market that was an orally inhaled cromolyn sodium.  It was used to stabilize the mast cells in the lungs, reducing exercise induced asthma.  I wonder if anyone knows if there's a similar drug available now.  I believe Intal is no longer available.  Joan


__________________
Take care, Joan

*******
"I try to take one day at a time, but sometimes several days attack me at once."

30 October 2010 12:59 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #26 - 12/28/10 at 16:59:30
 
(Archived from edubrovs - original forum)
Thanks Everyone! Very useful information. I dont have any trouble breathing during exercise and interestingly enough I eat quite a bit of berries and tomatoes and I did not think they make me itchy, but I am going to check this out to see if they do.

I probably had this disease since I was a kid, I remember one time I had major trouble breathing during a 1.5km race back in high-school or even junior-high and I think it was attributed to bronchitis which now I realize may have been a simple mis-diagnosis. But thats it. I never had another such attack. Of course, living with this disease for probably all my life I may have adjusted sub-consciously so that being itchy perhaps is something that I may be used to without it impacting me. I am going to try and pay attention to this, but again, I think that in many of these instances our mind wins over body and I can really easily begin to attribute every little itch, ache or injury to this disease, but I guess at the end, the question is whether there is any benefit to doing this. After all, this condition is one that we cannot really do too much about... at least not at this time.

When I heard that I have mastocytosis, I started reading... of course I found the diagnosis that in some instances you may have 1-3 years to live (I forget the paper I read) so I got a bit depressed, then my wife told me that in that case I should have been dead when I was much younger...I guess this is the kind of disease you need to accept, study your own body, adjust and continue with life. There is little point in getting depressed and giving up on life. That would be crazy! Sure, I can stop exercising, gain 200 Lbs, be depressed and then die from a stroke... or I can push myself, enjoy every second and perhaps just be a little more careful in monitoring how certain things impact my body.

I think we all have instincts that we need to listen to. For me, it would seem I managed to make the right choices in avoiding OTC drugs, avoiding alcohol and other triggers. I bet we all have these instincts and just need to listen to them. Somehow, our bodies have the ability to adjust and know what is good for us!

When I do my first IRONMAN I think I will wear a shirt with the mastocytosis printed on it.. bring some awareness to this condition.

Cheers,
Ed
 
31 October 2010 10:02 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #27 - 12/28/10 at 17:00:53
 
(Archived from mikev - original forum)
Ed:
I agree with Lori, I work out used to be heavily but now lightly every morning before work and for me it usually is my best time of the day. I also walk & do a light work out after dinner. I used to play competitive tennis until masto got me. Have had to modify work out routines to lighter and watch working outside in the yard in the summer when it hot as I tire much more easily now. I still love to be outside as much as possibe since work in an office inside all day.I also agree that it's a great stress relief & also it takes my mind away from my chronic skin pain. Even with asthma I still very seldom if all get out of breath. I just have to watch my OCD tendencies because if I push to hard it will make me very tired & I'll have to take a nap in the middle of the day on the weekend. What a waste of valuable free time plus after the nap I don't feel right for about an hour & Lori I am Nasids intolerate also make my skin pain worst.  Well Ed good luck in the Ironman, although I played tennis for more than 35 years 4-5 times a week competively & was in great shape, to do an ironman with masto would be a great accomlishment as far as I'm concerned. I miss the competion but masto is such a tough competitor that to battle it every day requires a lot of my energy. One day when you will be like me in my 60's and you'll remember your athletic accomplishments and take great pride in them. Good luck & may your masto be quiet on the days that you compete.
Mike v

31 October 2010 08:36 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #28 - 12/28/10 at 17:01:22
 
Mike - now THAT was beautifully said!
__________________
Feel well!
Deborah 31 October 2010 10:46 PM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Deborah's tips! How to avoid triggers (food, lifestyle, stress)
Reply #29 - 12/28/10 at 17:02:12
 
Hi Ed,

Since I am now back in town, you get to be the lucky recipient of my advice! Haa! Just kidding!! Actually, I wanted to reassure you that you don't need to change a thing; just add a bit maybe. When I was working out doing cardio for 1.5 hrs every day with a personal trainer who came to my house (that was great!) for about 6 months, I felt terrific!! I was also dieting and eating such a strict diet that there was no chance of me eating any foods or ingredients that would trigger me. I was not on any meds at the time, because I was still undiagnosed then. (I have a mast cell disease called Idiopathic Anaphylaxis. I am one of the shockers. I am very well now and haven't shocked since I started meds. However, I never shocked during those 6 months of exercising/dieting either.) I know that the combination of the exercise and the diet kept me well and kept my mast cells from misbehaving.  I cannot exercise in heat of any sort, so I have to be indoors in heavy air conditioning. Otherwise, I get a rash, hives, itchy, and my throat closes.

In your situation, the most that you have are the masto spots and some itchiness if I recall from what you wrote. I would advise that you continue what you are doing, but that you simply be aware. If you get a rash, hives, itchiness, feel dizzy, or have tightness in the chest/throat clothing sensation, then you cannot ignore that. Your body is telling you that something is wrong and that you need to respond to it. I would simply advise that during your training, you carry 2 epi pens with you as well as some zyrtec and allegra. Epis are to be used if you feel like you will pass out. Otherwise, you could take a zyrtec or allegra or both if one didn't halt the symptoms. You don't need to worry now because you don't have any symptoms when you work out, so no need to do anything. I would never go on any meds as preventative if I didn't have any symptoms. Now, I don't know much about the masto spots. Will those increase if you continue to workout in the sun? Perhaps that will be the concern you have to think about and you have to decide if that is something you can love with or not (more permanent spots appearing, that is).

If I were you, I would be looking at this preventatively: I would travel to see Dr. Akin in Boston. I would tell him that you do fine now, and you have no desire to go on meds since you are fine. However, you would like to know if there are any risks to be aware of while doing marathons and training, and what should you do if symptoms appear while you are training. Most of us have to be on meds every day to stay stable. You probably just need the meds as needed in an emergency -- not as daily meds. In other words, just to have with you in case an emergency popped up. If you ever want to go see Dr. Akin, private message me and I will send you his email address, as that is how he likes to be contacted.

In the meantime, good luck on the Ironman! Keep us posted!!


__________________
Feel well!
Deborah 01 November 2010 10:20 AM
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
Pages: 1 2 3 
Send Topic Print