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Suggestions for avoiding external triggers

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Nov 19, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi,

    From looking at recent info here, I want to look closer at possible external triggers.

    Does anyone have any tips on which shampoos, household cleaners, hygeine products, cooking utensils, pots and pans (No Teflon for sure), etc are safe for us. Are there specific chemicals we should avoid ? What are you using ?

    Is Seventh Generation a good choice for dish soap and laundry soap ? They even say it's gf on their site.
    I like this brand dish soap and wasn't happy with the Earth Freindly dish soap. I react to eating vinegar
    with throat swelling so I'm guessing that's out for now. Has anyone tried their laundry soap ?

    I've tried several Eco freindly non stick pans and I don't react to them until I've used them a couple of months. Then I start getting a funny after taste if I use them. Bleh ! Other than buying new ones every couple of months, does anyone have a suggestion ?

    I'm pretty sure I'm getting itchy pimples on my scalp from 365 shampoo. I thought it was something I was
    eating until I started experimenting with my shampoo.

    Tx .. X
     
  2. Dreambirdie

    Dreambirdie work in progress

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    Hi X--I have MCS and do not use any commercial products for cleaning, laundry or body care, and have been doing so for the past 25 years. All commercial products contain chemicals that are neuro toxins, endocrine disruptors, and carcinogens. They are not an option for anyone with an impaired immune system. http://www.sciencedaily.com/releases/2008/07/080723134438.htm

    Here's a list of some of the worst and best choices for laundry: http://www.naturalnews.com/028846_laundry_detergents_dioxane.html

    Here's a place to look up the most and least toxic body products: http://www.ewg.org/skindeep/
    You type the product name into the search engine and it will give you a rating on how toxic it is, or you can browse through each category from the menu at the top of the page.

    As for personal choices, I use Seventh Generation (Free and Clear) for laundry, and put a pint of vinegar in with it to remove oils and grit. For dishes, I also use the Seventh Generation brand. For hair I use Earth Science fragrance free shampoo. For moisturizer on my face I use Mychelle Deep Repair cream. For moisturizer on the rest of my body I use pure organic coconut oil. For cleaning my house, I use mostly vinegar, (lots of it!) and some Seventh Gen. laundry soap if I need it. To sanitize, I mix equal parts vinegar and hydrogen peroxide, and squirt that on my counters and my toilet in the bathroom. On rare occasions I use bleach, to clean my water filtration system, but always wear a mask. And... I never wear shoes in the house, which keeps my floors clean enough that I don't need to mop them more than 3 times/year.
     
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  3. xchocoholic

    xchocoholic Senior Member

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    Wow. Thanks dreambirdie. I'm half asleep so I'll check this out further tomorrow.

    Twenty five years of no commercial chemicals is great. Congrats.


    G nite ... X
     
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  4. camas

    camas Senior Member

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    Another external trigger for mast cells is friction. I've seen several discussions on masto sites about wearing soft, loose clothing. I've switched from jeans to yoga pants for lounging around the house, despite feeling a bit long-in-the-tooth for them. I am a lot more comfortable -- no more irritating red itchy marks around my waist. I see that some can't tolerate spandex, so wear only cotton.
     
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  5. Dreambirdie

    Dreambirdie work in progress

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    camas--That makes sense to me. I have been doing yoga since I was 16, so any clothes that I can't do yoga in are not clothes I want to wear around the house, which is where I spend most of my time. Jeans, and most pants with zippers, feel so stiff and rigid to me. I rarely wear them any more, though I am fond of my old worn-in cords.
     
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  6. taniaaust1

    taniaaust1

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    [i can taste non stick pans too. I now have a ceramic frypan. My boyfriend brought it for me about a year ago and its excellent, still like new thou I use it more then once daily (and often forget about it on stove too so burn things black in it so it gets a real beating but the burning things in it doesnt run it unlike the horrid non stick pans which if you really burn something once in them, they are ruined). Unlike metal pans.. its fairly non stick, very comparable to them and is so so easy to clean. (and i dont have to worry about getting that yuck taste into my foods).

    Ceramic fry pans are very expensive but I would never buy another kind of frypan after having one of these. This is one of the ones I have http://compare.ebay.com.au/like/181016849623?ltyp=AllFixedPriceItemTypes (and then I brought the large size after having this small single person serve size one for a while) . I thou have no idea if the cheaper ceramic ones are just as good as the ceramic Baccarat brand one I have as I havent tried any other brands.

    My no harmful chemicals or natural laundry powder.. I trialed about 6-7 different kinds which I wasnt happy with (from one staining my clothes from its green colour, to others just not washing as good as the powder I used to use before having to go no harmful chemicals) .. before I found the eco store laundry powder (its fragranced with Lemon verbena natural essential oil). www.ecostore.co.nz

    To clean my bath, basin, stove top.. i just use normal bicarbonate soda (its a powder which can be used in cooking too for raising cakes etc). This generally works just as good (and at times better) then normal general cleaning products.
     
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  7. xchocoholic

    xchocoholic Senior Member

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    Thanks camas,

    I'd never thought about friction. But after reading that article on nociceptors (sp? It's by yale and I posted it
    here) it makes sense.

    I usually wear stretchy jeans if I'm going out but only loose clothes around the house. I've often wondered
    if I was reacting to the dyes in my clothing. Esp the blue used in jeans.

    Hi tan,

    Great info. I'm going to look for a similiar pan. The last one I bought was a Mondo at Home Goods. It's
    suposedly ceramic but after 2 1/2 months it's already giving me an aftertaste. I loved it at first tho. So far non have lasted
    more than a few months. Could it be that I let it get too hot once and ruined it ?

    What's up with the aftertaste anyways ? Why after and not during ? I get this a lot. I've noticed that if I take a Himalayan liver
    care first thing in the morning, I get an aftertaste too. I'm assuming that means it's a liver problem.

    I've gotta get out of here today for some groceries. Hope everyone had a great day.

    Tc .. X
     
  8. camas

    camas Senior Member

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    Another external trigger for mast cell degranulation is becoming too hot or cold. I spent about a week fussing around trying various blanket/comforter combinations on my bed until I didn't find myself waking up in either state. I figure every little bit helps.

    Exercise is also a trigger. Big surprise! Masto patients don't use the term PEM, but many sure complain about having it.
     
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  9. xchocoholic

    xchocoholic Senior Member

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    I wake up all night long either sweating or freezing. I just thought it was the remnants from
    menopause.

    I wonder what's behind their PEM. I keep thinking Dr Peckerman was right about it being from oi. Esp now
    that my oi is responding to mc meds.

    Thanks for doing recon on the other mast cell boards. : )

    Tc .. X
     
  10. camas

    camas Senior Member

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    I'm not sure what the mechanism for PEM in masto would be, but fairly frequently they talk about pushing themselves too much physically (i.e. exercise causing mast cell degranulation), and then paying for it by having to spend a couple of days on the couch. I have read that mast cell activation can be delayed. You are exposed to a trigger one day, but your mast cells don't respond until the next day or even later.

    Maybe it is partly due to OI? Here's something I found on another site:

    I'll continue my reconnaissance and try to bring back the best of what I find. lol
     
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  11. xchocoholic

    xchocoholic Senior Member

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    I totally agree with what the Vanderbilt info said. It didn't make sense until my internal swelling went down and I could
    stand longer.

    Dr peckerman speculated that pem was due to the complications of hypoperfusion caused by oi. Our bodies can't
    function normally during hypoperfusion because of the blood loss. This means any number of biochemical processes are compromised. I don't remember him
    saying anything about mast cells causing oi tho.

    His
    theory matches up with how I feel too. I feel healthy if I'm laying down, rested and fed but once I'm upright I quickly feel
    weak, etc. alk over my body. And I can feel all the muscles, my heart, lungs, etc relax after I've laid down again long enough for my
    upper body to recover. Typical recovery time is an hour but varies with my activity level. : (

    I tracked my io with a bp cuff a couple of years ago so I know how my body reacts. It made me feel better
    knowing what was happening.

    Sorry if this info is redundant or annoying. I feel like I've said this 1000 times. It's my computer background. I look for tangible
    info in order to solve puzzles. I drive my family nuts because I'm always trying to solve puzzles. ; )

    We'll keep your recon missions a secret, eh ? Lol .. Tc ... X

    Ps thanks for mentioning the part about delayed reactions. I experienced that today in fact so I suspected it.
     
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  12. camas

    camas Senior Member

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    Heh. Me, too. My doctor always tells me I'm too analytical, (i.e. he has to research everything I bring him). Good thing one of us is, cause he'd never even heard of Mastocytosis or MCAS.

    Disclosure: I'm a former tech writer. :)
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Have you seen them talk about recovery times from certain exposures ? Would the difference
    be because one is IgE and the other IgG ? I would think IgG would take longer to show and resolve.

    Bacon and tomatoes cause
    me to have fibro pain for about a week. The shiners I get from dairy lasts 7 - 10 days.
    And I feel fine when eating these tho. IgG ? If I hadn't been on an elimination diet, anf tried multiple
    times to add these back, I'd never have caught this.

    But my pelvic pain from angioedema comes on within minutes of exposure and goes away within hours. It was extremely
    painful when it was there. IgE ?

    IgE reactions respond to mast cell meds but IgG won't, right ?

    Tc .. X
     
  14. xchocoholic

    xchocoholic Senior Member

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    Kewl. So you understand ... That explains your attention to detail too. : )

    I did some technical writing as a programmer analyst. Right before I became ill, I automated a computer system and wrote the manual
    to go with it. But mostly I just consulted with computer users about their one liner computer requests and took it from there.
    Good times, eh ? Tc .. X
     
  15. camas

    camas Senior Member

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    Yep, good times writing software manuals that no one ever read, but I have to confess that I only refer to the documentation on anything as an absolute last resort. lol

    From what I understand, IgE is just one of many triggers for mast cells. In fact, you can have Mastocytosis (and I would assume MCAS) and feel like you are allergic to the world, without having a single allergy.

    What happens with mast cell activation is that a trigger (certain drugs, a scent, virus, exercise, etc.) will cause these over abundant or over vigilant mast cells to freak out and degranulate spilling out histamine, prostaglandins, heparin, etc. That's why antihistamines help.

    However, if you do have a true IgE mediated allergy (like say to cats), that will also trigger your mast cells resulting in the release of histamine and everything else.

    This finally explains my strange allergy testing results. Many years ago, when I first sought out an allergist, I didn't react to a single thing on the skin prick test. He was taken aback because after looking at my nose and throat he was sure I had allergies. So I came back a month later and repeated the test, and I reacted to everything. It must have been because of the histamine in my skin and my dermatographism. So he had me take allergy shots for a couple of years, but of course they didn't do any good because I apparently had no true allergies.

    I don't know how IgG figures into all of this. Maybe someone who understands it all can jump in and explain, or correct me if I've gotten anything wrong.
     
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  16. soulfeast

    soulfeast Senior Member

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    do you have a source for this quote? thank you!

     
  17. soulfeast

    soulfeast Senior Member

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    Strangely.. compression hose have helped it seems with the fluid leakage into tissues which I was told could be mast cell related.. maybe the dilation and pooling take place first and moving the fluid up before leakage can take place helps???? Alot less pain. I have to bind my soles as well when I am going to be out and standing, walking.

    We have been low dosing with only 10 mg claritin and 10 mg pepcid (generics) daily.. have not realized we could break these tablets up into quarters and such.. does the "24 hour relief" not apply (seemingly not and then why??)

    I have had a shift in energy. But I also had two badly infected teeth taken care of and this has made a huge impact on some symptoms as I have noticed other symptoms are related to consuming histamine triggering, high histamine, and mast cell triggering foods.

    what is the benefit of zyrtek over claritin?

    I am working out with weights up to 10 pounds but only when I feel like I am ready. i can feel that old feeling of respiration that I have been missing for so long. I don't know how much is due to moving out of mold situation and then addresses the infected teeth.. dentist said this has been going on a long time (back molars) and I am wondering if this is one reason I did not improve after relocating.

    I had infections "locked" into my sinuses as well.. I think these kinds of infections, fungal or strep, can be mast cell triggers.

    I am using nasalcrom, a compounded allergy spray that contains loratadine, montelukast and argumax and voriconizole.

     
  18. SickOfSickness

    SickOfSickness Senior Member

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  19. camas

    camas Senior Member

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    Hi soulfeast,

    I believe they recommend zyrtec over claritin because it stays in your system a little longer. I don't know that it really matters all that much though. Even with the zyrtek I'm splitting the dose 10mg at night and 10 in the morning and a tiny bit more here and there if I'm feeling itchy or flushed. Masto patients take a ton of antihistamines whenever they need them. I think X said she read that they recommend splitting the doses or taking them as needed so that you can stay on top of a reaction so that it doesn't snowball.

    Good to hear you have had a shift in energy. Yeah, getting infected teeth dealt with is bound to help. My teeth are a constant problem. I have two more crowns to replace and a buckle filling on another crown, and I'll finally be caught up.

    I found out yesterday that pumpkin is, indeed, high in histamine as I flushed and bloated. Of course the soy in the pie probably didn't help matters either. Oh, well pumpkin pie only comes once a year.

    Thank you, SickOfSickness, for the link to that article. It's pretty dense, but Figure 4 makes things a little clearer.
     
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  20. soulfeast

    soulfeast Senior Member

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    Thank you, sickofsickness and camas.
     
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