Paging Tex, Zizzle, Marybeth, Mast Cells

[Gabes-Apg]

as I was replying to JenniferS post about mast cells, i was thinking that maybe we should do up a informative post

'All you need to know about mast cells/histamine'

given it is so common amongst MC'ers. we pull together the key threads that have the best details, the best links and articles

it would be quite difficult to summarise the last 10 years of MC'ers experience with mast cell/histamine, i am confident that we can pull together the key bits of information.

thoughts??

[wmonique2]

Gabes,

Good idea. There was a discussion when I joined a few months ago with Polly and the gang. I didn't pay much attention to it because I didn't think it related to me. Then I wrote to you about it inquiring about it...

Little did I know that my BIGGEST issue was a histamine issue. Not until I read all the discussions did I realize that if I could control the histamine issue, I'll be OK.

So I tried it. I even eliminated elavil which essentially was doing the same thing as an anti-histamine except that elavil was keeping hungry all the time and sleepy all the time.

I think a lot of people would benefit from having the info right up on the board so they can test and see if it is something that might work for them. I eliminated budesonide, eliminated elavil, left with one liada a day which I intend to phase out soon with just one anti-histamine a day.

had I not been on this forum and that discussion was taking place, I would have NEVER learned about the connection of histamine and the debilitating nausea I was suffering from.

so, I think that having the information upfront would be a very good thing...

Love,

Monique

[mbeezie]

Gabes,

Here are some mast cell articles etc. to get one started in understanding mast cells. Over the years I have come to realize that no two mast cell flare ups ever look the same, not even for me. As the Maintz article (the first one) points out, mast cells affect many parts of the body.

http://ajcn.nutrition.org/content/85/5/ ... l.pdf+html

http://www.allergynutrition.com/resourc ... erance.pdf

http://www.allergynutrition.com/resourc ... 20(33).pdf


http://hyper.ahajournals.org/content/45/3/385.full

http://alford.grimtrojan.com/Mast_Cells ... isease.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

http://www.clinicaladvances.com/article ... ramsay.pdf


Mary Beth

[tex]

Gabes,

That's a good suggestion, but the problem is that anything we post will slowly disappear as new posts are added. I can make it a sticky, but doing that just pushes all the other posts further down the board, and regular posters eventually get tired of seeing a list of the same old sticky posts stuck in the way.

That sounds like something that I need to add to the website that I've been meaning to open (microscopiccolitis.org), to give newbies a starting place that lists important information in a more organized fashion, and from there, once they review the basics, they can come here and join the discussion. I intended to have it up and running by now, but I got sidetracked and put it on hold, because I couldn't decide what else it needs. You've just pointed out what it needs — an up-to-date listing of the most effective treatment options that are currently available, (including information on the role that mast cells seem to play).

I'll try to get that additional information added within the next few days, and then I'll post a link so that you can critique it.

Tex

[wmonique2]

Tex,





Monique

[Gabes-Apg]

Marybeth- thanks for the prompt response - and the good collection of articles.

Tex - totally understand, i even wondered if like things like MRT etc whether mast cells needed its own seperate area.

I am one of many, that when mast cells were being discussed it didnt seem to have relevance and them whammo, it became the main focus. And if learning all the lingo and technological bits of MC is not overwhelming enough, to then delve into mast cells/histamines H1, H2, H3, H4 etc

i thought a post or a thread that has the best collection of articles and a good explaination to help people understand why mast cells/histamines seem to go 'hand in hand' with MC for most people.

a bit of a resource on the H1, H2 blockers/antihistamines, which ones have lactose additives etc

Aside from my desire to set up a website named 'soy is evil' - another one i thought of starting is 'toxic inflammation'
if we can heal and curtail the inflammation whether it is MC, mast cell or otherwise, wellness will blossom...

[Gabes-Apg]

PS tex
my suggestion can be a 'whenever' type thing, no hurry. last thing i would want to do is give you more work!!

have you had any rain yet?

[Zizzle]

I once did a lot of research in the Ehlers Danlos Syndrome community (Joint hypermobility). They seem to suffer from mast cell issues at an alarming rate. Their mast cell involvement leads to POTS, MCAS, Mastocytosis, anaphylaxis, severe stuff.

There is a woman, Josie, who created a website about it from her bed. Check out her thorough post here:

JOSIE75

http://www.inspire.com/groups/rare-dise ... need-help/


I still don't know what mast cell issues are affecting me, or to what degree, because I generally feel good other than the skin rash -- a rash that doesn't come and go like allergic rashes. I know I have rogue T-Lymphocytes that are attacking part of my gut mocosa and my skin. Beyond that, there may not be that much going on. I imagine I have over-sensitive mast cells on my skin (skin writing, heat rashes), but this may be "normal" for a huge portion of the population. My histamine-related symptoms just don't add up to something alarming for me personally. Am I just fooling myself? I suppose my other issue is...what can be done about it other than suppressing symptoms with meds and restrictive diets? I feel like mast cell issues are becoming the new symptom of leaky gut problems and autoimmunity. But they don't seem to be the root cause. Am I missing something? Go ahead, tell me I'm a moron. Other than feeling better by taking histamine blockers, are we ultimately able to heal ourselves with this approach? Can mast cell numbers decrease or stop degranulating once we address the root causes of our inflammation?

[tex]

Gabes,

Check this out. I don't have any links listed yet in the article about "Treatment methods found to be most effective". I just started a brief, basic article. You realize, of course, that if you really pursue it, there's easily enough information involved in the association between mast cells and MC to write a very long book (about the size of War and Peace ), and much of it would be so complex (and boring) that very few people would read very much of it before losing interest (unless they decided that mast cells were their primary problem). It's not easy to handle that much information on a website, in an organized manner, except by links, unless it's the main topic for the website.

We had a good rain about 4 weeks ago, and I thought that maybe the trend had changed, but we seem to be right back in a drought pattern again. The weather bureau forecasts rain, but it doesn't happen. At least it settled the dust for a while.

Tex

[Gabes-Apg]

Looks Great Tex!!

well done
I should have sent you more of that GF/DF/SF candy to keep you going!!!

if you need any help putting text into HTML or other formats let me know.

agree - having links pages is the best format (like folders in a filing draw)

What i was picturing for the histamine/mast cell was under a page listing some of the common health issues that occur with MC,
with a laypersons explaination of what histamine /mast cells is and then have the 'best of the best' articles and links to websites
i really like that chart that joe posted as it explains what type of H reaction the symptoms are.

based on the feedback of this board, when people took the right H blocker or had acupucture etc, those symptoms abated / ceased

As i said, the last thing i want to do is give you a heap of extra work!!! i thought having this resource page would help giving how frequently the topic comes up. and collate what we as a group have learnt over the past 6 years or more.
(and I am surprised you dont you want to write another book???)

[wmonique2]

I don't want to hijack this conversation but I am as concerned as Z. about this mast cell issue.

Like Z. I want to know if anything can be done to heal ourselves instead of just suppressing symptoms with anti-histamines.

Also, what kind of doctors treat this kind of disorders? Immunologists? My GI doc never mentioned anything about this so I am assuming it is out of range.

Monique

[mbeezie]

Monique,

Most doctors are unaware of mast cell issues. I see an allergist who was trained by one of the mast cell researchers on Boston. Some GIs are also aware of mast cell issues in the gut. It is best to arm yourself with the articles that I posted above before going to any doctor - sometimes you have to educate them.

Mary Beth

[wmonique2]

MB,

thanks for your post. I've been reading your links, thank you so much for that wealth of information. It's wonderful.

As far as educating doctors, I have found out throughout my life that I often knew more than my doctors...pathetic, but true.

Monique

[Deb]

http://chriskresser.com/headaches-hives ... -the-cause

[tex]

Monique,

Have you seen our list of the only doctors we have found so far who are familiar with, and qualified to treat mast cell issues associated with MC? Of course, since they are medical specialists, they tend to treat the symptoms rather than to resolve the cause of the problem, but at least they are acquainted with mast cell issues.

Tex