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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> triggers for mast cells http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1308528005 Message started by nanciswell on 06/19/11 at 13:00:05

Title: triggers for mast cells
Post by nanciswell on 06/19/11 at 13:00:05

What is the chemical that triggers the mast cell to send out histamine?? Is it related to a certain hormone? and where does that hormone/ or whatever originate from.??

I also wonder if researchers have looked into any bacterial/ viral link to masto.. just as say for ulcers it is now known that alot of ulcers form due to the bacteria called Heliobacter pylouri { sp?}

nancy

Title: Re: triggers for mast cells
Post by Starflower on 06/19/11 at 13:53:52

There are MANY things that trigger mast cells to either partially or fully degranulate. For example...

- Food proteins
- FceRI antibodies
- Anti-IgE antibodies
- Complement
- Prothrombin
- Fever
- Exercise
- Infection
- Hot food/drink
- Physical stress
- Emotional stress
- Pressure
- Vibration
- Hormones
- Sunlight
- Antibiotics
- Most opiods
- Anesthetics
- Beta blockers
- Heparin
- Latex
- Adhesives
- CT contrast
- Iodine
- etc...

Every single person has mast cells... and we desperately need them to protect us from viruses, parasites, and bacteria. To a certain degree, mast cell degranulation is a normal, completely healthy process. The danger is when you have too many mast cells, they trigger too easily, and/or they release all their contents at once causing shock.

People like us are just getting way too much of a good thing ;D

Heather

Title: Re: triggers for mast cells
Post by Riverwn on 06/20/11 at 05:42:01

Ulcers and GI Tract masto reactions are 2 different things. Each person is different but, we all have our own signals that we are reacting; some people sneeze, some get a tickle in their throats. Some get nausea or heartburn, some flush and sweat. Some peoples BP goes up, others go down. Some people will have trouble breathing and their heart rate will jump up. Some june people get very dizzy. Some people itch like fire, some people cant get out of the bathroom.

Most of us will flush and our tummy will get upset. The stomach is the largest venous pool of blood--considered an organ, of course. With that great exposure to mast cells (even eating can trigger a reaction), it is the most likely area to begin/trigger reactions--but certainly not the last :)

Some Drs are researching if there is a chemical pathway to triggering mast cell reactions and theyve found some interesting facts--but not THE answer, quite yet. Lets hope this is the year!
blessings
Ramona

Title: Re: triggers for mast cells
Post by nelson1600 on 06/20/11 at 07:14:21

Ramona when I read your post I felt like I was reading an excerpt from my own life :)

Sneezing, tickle in my throat, nausea, heartburn, flushing, sweating, high BP, high heart rate, dizziness, itching, bathroom camping (as I call it) -- it makes me smile but not laugh (if that makes sense).

I will say this, when the itching gets way out of control I have found that Aloe works wonders... Ok, actually my wife figured it out. I would itch to the point where I would start breaking skin and for me if one area of my body starts itching then practically my whole body will follow. She asked and asked and asked for months when it would happen if she could do anything for me and always offered to rub aloe... Finally one day I was so tired of the itching and I caved (in my mind I thought there was no way it would help); but it does.

Now if there were only such simple remedies for everything else :)

Title: Re: triggers for mast cells
Post by Riverwn on 06/20/11 at 08:52:22

You wife is a smart woman :)

When you itch like that, its a dangerous time for me. Itching becomes a very bad cycle--you feel itchy and itch--the itching makes it spread faster and itch worse. I get to the point where it feels like fire and I want to rip my skin off.. Until I knew better, I would grab a brush and use that to itch.. I never do now!!

Do NOT itch when you feel like that (I end up in shock if I do). Recognize it as the mast cells in your circulation are buzzing like african bees, out of control. Time to stop them. First take an extra med--whichever works best for you. If Im really bad, I will take Benadryl and even prednisone to stop from going into shock.

Next, you must do something to relieve your skin (temporarily until the med kicks in). Aloe is great, whatever works for you... rub slowly do not itch. The less pressure on your skin the better. I have ice packs in the freezer for pain but I will use them for itchiness too. I also will jump into a cool shower and sit there until the meds kick in. (I also take a Xanax so I will "chill out" mentally).

Heres hoping you feel wonderful today :)
Hugs
Ramona

Title: Re: triggers for mast cells
Post by nelson1600 on 06/20/11 at 09:09:09

Thank you Ramona; I am lucky to have my wife, she goes way above and beyond on my bad days and I couldn't imagine how I would function without her.

As to the Benadryl; as I was on my "Road" to diagnosis I was buying and taking the pill form of benadryl and found that it really did not make me feel any better and left me drowsy causing me to sleep quiet a bit more frequently and for longer periods of time. (I think I read someone else post similar info about Benadryl recently)...

Just out curiousity is the liquid form better than the pill form? I haven't tried liquid benadryl yet but would be open to it as it's OTC and inexpensive in comparison to Zyrtec and Zantac...

Title: Re: triggers for mast cells
Post by Riverwn on 06/20/11 at 10:51:26

I dont think the liquid is any better than the pill but.... it does work quicker since its a liquid.. it doesnt have to fall apart first to be metabolized by your body--so thats a plus.

Heres a nurse quick tip if you take pills and need it to kick in quickly (like a pain pill). Take your pill and follow it with a cup of something warm to drink. It makes pills dissolve faster and wakes the tummy up to start absorbing the medicine.

Have a great night.
Ramona

Title: Re: triggers for mast cells
Post by nanciswell on 06/20/11 at 15:53:11

I can extrapolate my question..

I am wondering if there is a possibility of a bacteria/ virus that is the reason our mast cells are so easily triggered..

So just as in ulcers where the bacteria is the culprit , maybe there is some bacteria/ virus which is alway present and if that was no longer there there would no longer be mast cell degranulation.

Title: Re: triggers for mast cells
Post by nanciswell on 06/20/11 at 15:55:16

another query..
How do food reactions happen ??
Are histamines released in all the parts.. ie stomach, small intestine, large intestine??

I know the mast cells can degranulate releasing histamine . But why do reactions go on and on for longer than the food is in the stomach.?? Does the histamine stay with the food as it progresses through the digestive tract so that it is continuing to irritate the linings of the small intestine , then large intestine.. ?? or are the mast cells also in the intestines and these release histamine.??

nanci

Title: Re: triggers for mast cells
Post by Starflower on 06/20/11 at 23:12:59

nanciswell wrote on 06/20/11 at 15:53:11:

So just as in ulcers where the bacteria is the culprit , maybe there is some bacteria/ virus which is alway present and if that was no longer there there would no longer be mast cell degranulation.

That's not how it works. Even normal people have mast cells that are constantly in a mild state of degranulation. The mast cells release a lot more than histamine... there are also prostaglandins (which signal pain), cytokines (which signal to other types of cells), leukotrienes (which cause vasodilation), heparin (a natural blood thinner), PAF (a very potent vasodilator), serotonin, tryptase, etc... Many of these things are necessary for the normal functioning of the human body. You wouldn't want to completely stop degranulation. It's like saying, "Can't you get rid of cancer by stopping cell division?" I guess you could... but then you would die, because cell division is necessary for human existence.

As to your question about foods... in classic (IgE) food allergies, your immune system has decided that a certain food (or foods) is a deadly virus. In response, it makes IgE antibodies to that substance... say, the protein in peanuts. Every time you encounter that food, those IgE antibodies say, "Red alert, red alert!" and they connect to the high-affinity IgE receptors on your mast cells, causing them to release all their contents at once. In that case, it's actually a good thing to vomit, because your whole GI system is lined with millions of mast cells. You don't want that food continuing on its way down the rest of your system.

Some people with mast cell disorders (a small percentage) also have food allergies. Most of us don't. I don't. My mast cells go off for other reasons that have nothing to do with IgE antibodies. Apparently, what the research is now showing is that most people with these disorders... maybe even all of them... have genetic mutations that cause our mast cells to trigger much easier than normal. That's not the kind of thing you can solve by avoiding a certain food or taking a pill.

Heather

Title: Re: triggers for mast cells
Post by Lisa on 06/21/11 at 03:11:28

As to the itches.

Ramona is 100% right in that you MUST NOT SCRATCH!! Even rubbing will trigger you further!

Why?

Well, there are mast cells all throughout the skin, as they need to be to do their normal function. However, the physical act of touching a mast cell, wherever it is in the body, triggers it. This is why the more you rub or itch, the worse it gets.

So, this is why, when our doctors do invasive exams, the possibility of that physical messing around with our innerds always creates some kind of triggering. This is why colonoscopes and endoscopes are risky procedures for us. They physical moving around of those inner tissues creates degranulation.

Now, if you take this further, all of us have varying degrees of sensitivity and some of us are more reactive than others which is why some of us can get away with the no nos whereas others don't dare do it! I, for one am so hypersensitive that my doctors freak when we have to do exams and I must be hospitalized to keep me safe. Some of you would find it hard to believe. I've had it where just the mere laxative, when it kicked in to clear out my intestines, was so aggressive that this put me into anaphylaxis! Believe it or not!

As according to Dr. Escribano's protocols, just the drying off of the skin of a masto patient, especially those with UP can put them into anaphylaxis. If rubbing the skin can do that, imagine what scratching will do? The itching is showing that you've been triggered. You're already in the snowball and it's rolling about, all you need is a bit of a hill to pick up momentum!

So, when you feel that symptom kick in, take it as a warning sign that you're already stepping and moving into dangerous territory, you've got to find a means to halting that movement and retracing your steps back into equilbrium.

I hope this helps!

Lisa

Title: Re: triggers for mast cells
Post by nanciswell on 06/21/11 at 03:48:37

Why not a virus that affects the immune system to be trigger happy.. ??

Like maybe one of the vaccines we have gotten?? I have a virus from the polio vaccine called Simian virus.. IT was not supposed to be there in the first place but it was being injected into a heck of alot of people as how many batches of polio vaccine where infected with the monkey virus..

It was not until 1963 that they made sure it was not in the vaccine. It leads to chronic neck/ shoulder / in my case a frozen shoulder. plus cancer in the brain.. Now cancer was not thought to be viral for a long time.. We need to keep an open mind ..

nanci

Title: Re: triggers for mast cells
Post by DeborahW, Founder on 06/21/11 at 04:37:09

Ramona,

You mentioned drinking something warm after your pill to get it to dissolve quickly. I have an even better tip for you, given to my by amazing internist (who died from Hodgkins). At the time he couldn't figure out what I had. He went with severe IBS, but I doubt he thought that was really it. Anyway, he gave me Xanax as an anti convulsant for my GI tract since I was having so many attacks. We noticed the Xanax would stop the diarrhea and attack. He told me that when I got sick and needed it to work quickly, that I should put the pill under my tongue. He said it would dissolve and enter my blood stream instantly rather than needing to wait for it to work by swallowing it.

I bet that would work with our histamine blockers during am attack. Is there any reason to not try it when getting really ill? I have often wondered about this, but didn't know if the histamine blocker should not be dissolved that fast. Do you know?

Title: Re: triggers for mast cells
Post by nelson1600 on 06/21/11 at 05:49:32

Heather -- I've wondered about food allergies because within reason I have not had "many" limitations on what I can or cannot eat; my indigestion / heart burn has spiked over the last few years which I now understand can cause me to experience other issues; so I am mindful of what I eat and when I eat it. Like pizza for dinner is a thing of the past for me, but I can still eat it for lunch or if there are left overs a small slice as a mid day snack (when I actually have an appetite)... However I know that I am "NOT" allergic to anything I've ingested over the years. I appreciate you pointing that out because I was one that thought food allergies were more common with Mast Cell Disease.

Ramona -- You are so sweet; I still have benadryl in the pill form that I have not taken; so I will take your advice today (as I am already reacting and putting on a show for my kids) and see if taking it with a warm beverage helps make it work a little quicker. After I posted yesterday I started wondering if the drowsy feeling and amount of sleep I needed when I took it last year was more of a sign that it was working and my body telling me to REST :)

Lisa -- I promise "No More Scratching" -- I never thought about how scratching in one area could cause the mast cells to go nuts everywhere else; but it makes complete sense. I tend to start itching more around the calves of my legs more frequently than any where else and if I scratch; within a minute or so I will be itching from head to toe (and for those who know what I am talking about; it is extremely uncomfortable).

I am also curious about Deborah's question about putting our antihistamine's under the tongue to get them into the blood stream to work faster. It makes sense to me as well.

You are all so wonderful and I hope you are having a great day today...

~Lucas

Title: Re: triggers for mast cells
Post by Riverwn on 06/21/11 at 05:49:44

I think it would depend on each pill and how much of coating it had on it but, youre right...many meds that are taken by mouth can be crushed and put under the tongue to metabolize quicker. I would look up the specific pill and see what it says (never do it with a time release pill). Great tip.. and thanks,, my memory fails me sometimes LOL ahhh brain fog!!
love ya
Ramona

Title: Re: triggers for mast cells
Post by Joan on 06/21/11 at 05:52:33

I find that Ativan helps my attacks, too. I also noticed that it's absorbed under my tongue. I've wondered exactly what it does that's stops them?? Does anybody know why?

I haven't tried the Benadryl that way (and there are other antihistamines available in liquid, like Zyrtec, Claritin, and I think Allegra, but that's an interesting thought. My doctor told me to break open the Benadryl capsule and swallow the insides for faster absorption. Chewing a pill will hasten absorption, too, but some of them taste nasty!

Benadryl makes "fast-melts" that melt in your mouth. I like to carry those in my bag, because they weigh so much less than liquid and are a lot less bulky. They only seem to come in 12.5 mg., though, so it takes 4 to equal a single adult dose. Sometimes they're a little hard to get out of the blister pack.

Title: Re: triggers for mast cells
Post by Joan on 06/21/11 at 06:50:57

Nanci,

The experts don't believe at this time that there is a virus or bacteria that remains in the body triggering mast cells. Some patients feel that their disorder was set in motion by an illness, but the types of illnesses patients report vary from patient to patient. And, the illness could have been a first mast cell attack that just felt like an infection. No one knows for sure. Infections can be degranulation triggers, though, as can anything that revs up the immune system.

In 2008, Dr. Akin told me that researchers believe the cause of SM is genetic damage from radiation exposure. That could be from the atmosphere, earth, reactors, medical exposure or other. (That doesn't mean we shouldn't have x-rays when we need them. It would take a lot more exposure to cause this kind of damage.)

However, there also are cases in which mast cell disorders run in families, which brings up a million other questions that don't have answers at this time.

As with any new area of study, of course there could be one or more causes or contributing factors that turn up later. Research on mast cells is still in a very early stage.