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Allergy / Mast cell treatments

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.

  1. SaraM

    SaraM Senior Member

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    I am using Alertec which I bought at Costco, but it makes me sleep all day, and does not help much. I have got eczema all over my nose , and lips now after eating some pineapple and mango. I also had flushing and felt very hot as the eczema rash was getting worse and spreading. Generic allegra also does nothing for me.
  2. xchocoholic

    xchocoholic Senior Member

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    Hi sara,

    Sorry to hear you're having rashes. I get a few but they typically go away quickly so I haven't
    looked at treating rashes.

    Avoiding known trigger foods appears to be very important even while on allergy meds. This may be
    your best treatment for rashes. I'd look at your laundry soap and bathing products. I just had to stop using
    Whole foods brand shampoo because it caused scaley sores on my scalp.

    Second genertation H1s are less likely to make people sleepy but still can. If you google
    second generation h1s you'll see the list. I don't do well with allergy meds that make me drowsy either.

    Maybe camas will know more about long term treatment of rashes via mc meds. Tc .. X
  3. camas

    camas Senior Member

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    I'm sorry to hear that neither zyrtec or allegra are helping.

    Maybe a place to start would be to keep a food diary and avoid those that you are sure cause a reaction. Pineapple and mango are both histamine liberators according to my HIT (histamine intolerance) app, so that could explain your reaction.

    Have you tried something topical for your eczema? I don't get eczema, but my newer TMEP spots do itch after I've eaten something I shouldn't have. Zyrtec helps the most, but I've also made up some Magic Masto cream (you can google various recipes) by dumping a bottle of nasalcrom into a lotion that I know I tolerate. It does help some.
  4. SaraM

    SaraM Senior Member

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    Hi,

    Here is a picture of the type of rash I get from time to time, mostly on my lips, nose, or chest:

    http://www.flickr.com/photos/mastocanada/3734926271/in/set-72157622242515904

    I have tried loratadine ( a second generation H1s), but again feel very sleepy on it. Avoiding certain foods and supplements is the best thing for me. B6, 5 mg b12, vitamin D, and calcium make my condition worse and I wake up with severe muscle pain and extreme fatigue. Histame is another thing I tried with no positive effect. I will soon make some Masto cream. Thanks for the tip Camas.
    camas likes this.
  5. Adster

    Adster Senior Member

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    I was using real Zyrtec, adult. The grass and pollens have dropped heaps here so I might not need it so much now.
  6. DeborahW

    DeborahW

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    Hello. I happened to accidentally bump into this forum as I was online last night, and decided to join so that I could offer some suggestions. (I run the mast cell disorders forum.) It appears that some of you are having problems tolerating Zyrtec. If you have problems with it, I wouldn't recommend using it even in smaller doses because something in it clearly does not work for you. There are other alternatives, though, and I didn't see anyone mention trying Allegra. If you have not tried that, it works really great for mast cell reactions. I have mast cell disease and through trial and error (and my doctor's advice), have figured out which histamine blocker meds work best for me. The funny thing about mast cells are, though, that what may work for one person may not for another. I actually take Zantac, Allegra, and Zyrtec and I have really good results with all of them. For those of you who have never tried Allegra but are having allergy or mast cell reactions, you might be happy with Allegra. It is also a non-drowsy antihistamine. Another medicine that can be helpful to additionally try is Singulair. It is not an antihistamine, but an anti-leukotrine med.I can't tell you how leukotrines play into mast cell activation, but my specialist recommended it to me, and it really helped finally eliminate my itchiness when the H1 and H2 blockers couldn't. Hope this info helps someone! :)

    Deborah
  7. camas

    camas Senior Member

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    Welcome, DeborahW. Nice of you to drop by and offer some guidance. Please feel free to chime in anytime!
    xchocoholic likes this.
  8. DeborahW

    DeborahW

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    Thank you so much! I don't want to come in and be overbearing with tips though. I am happy to answer any questions about mast cells or mast cell conditions, and I love to help people get better much quicker than I did! (It took me 10 years to find the correct diagnosis and preventative treatment for my mast cell disease!) So feel free to toss any related questions at me!
    roxie60, camas and xchocoholic like this.
  9. xchocoholic

    xchocoholic Senior Member

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    Hi deb,

    Good to see you here. Thanks for starting the mc forum.

    If you're interested, I'm sure it would be ok to post your forum name / link in your signature
    here. We've already posted the link in this thread.

    Your advice for me to take more allergy meds throughout the day if I start feeling puny has been very helpful.
    I'm still working on finding the right regime for me but so far have found Wal-zyr (zyrtec), children's liquid
    dye free benadryl (using for throat swelling which is worse at night) at night
    and strickly avoiding my known triggers most helpful.

    I'm using nsaids for swelling and pain now because I got carried away eating my trigger foods. Duh ! I'm hoping to come of the nsaids soon to avoid gut damage.

    Tc .. X
  10. xchocoholic

    xchocoholic Senior Member

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    Hi adster,

    The mast cells meds aren't just for reactions to pollen or other known allergens. I'm actually one of the few who doesn't feel bad from pollen. kow.

    People with mc problems overeact to many substances that most people don't. In hindsight calling
    pwcs canaries back in the 80's was very telling. The mcs dx may be involved here too. For instance, I'm reacting
    to most common food intolerances plus many foods and that should be ok.

    Another example of symptoms I didn't realize was connected is I
    get internal and external angioedema. I've been treating throat and lip swelling for years instictively with liq benadryl. But I'd been dx with vulvodynia and
    was using the low oxalate diet as my ony treatment. Zyrtec helps this as do nsaids. Which makes me thnk
    this is from mast cells.

    Tc .. X
  11. Questus

    Questus Senior Member

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    SaraM, I'm not a doctor and don't pretend to be one, but your rash looks like a classic case of cutaneous mastocytosis.

    Have you found a hematologist/oncologist to help you? Please consider typing your city + masto in a search window to find a medical doctor near you to help.

    Am not suggesting this is a bad diagnosis. Think in your situation you may benefit by having a demonstrable case. That may sound counter intuitive but the picture of your rash is very compelling.

    It could be a good thing in terms of getting help for Cutaneous Mastocytosis. Cutaneous masto is much more common that systemic masto, Gettig a dx is a good thing and not something to be afraid of.

    Best,
    Questus
  12. MishMash

    MishMash *****

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    I tried to compile a list of possible MC trigger foods. It got so long, I became completely depressed and confused about controlling the condition through diet.

    BTW I get horrible sensitivities, especially during spring/summer allergy season. I can't take any of the meds and feel non-comatose. Somebody gave me an Allegra pill, and I felt like a zombie the next day. And that's supposed to be the mildest one, right?

    Can you give me five food groups that are typically considered to be non-MC inciting? The list of don'ts is way to long to remember.
    xchocoholic likes this.
  13. xchocoholic

    xchocoholic Senior Member

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    Hi Mishmash,

    Figuring out what works for each person is what makes this such a pain in the ass. I don't know if a mast cell expert could even predict what's going to work for each patient. I seriously doubt they know each patients food intolerances so fillers in meds can be a problem.

    I can't take Allegra because it gives me headaches. Did you try the children's dose ? I can take 1 - 2 tsp children's dye free benadryl. A tblsp dries me out too much. I'm good with Walgreens brand zyrtec but not the brand name makes me drowsy. I'm trying to take h2s but they make me feel weird.

    It's really not practical for me to give you a list of foods since I don't know which foods you like or are available to you.
    But roughly all grass fed meats should be ok. Wild fish are ok but be careful with shellfish. All plain fresh fruits and veggies are ok. Gently cook veggies.

    The low histamine diet is recommended but I found that I react more to common food intolerances. Common food intolerances are gluten, dairy, corn, soy and all chemicals. Any food you eat on a regular basis can be a problem esp if you're craving it.

    FWIW. I would say it's easiest to eliminate these foods slowly until you get to very bland Paleo type diet / organic meats, fruits and veggie diet. Go easy on the oils or stop these too. Go slowly because these foods can be addictive and cause withdrawal symptoms. If you google autism gluten withdrawal, you'll find an explanation for this.

    Once you've stabilized and are feeling better, you can add back in foods that may or may not be problematic. That's how I figured out that bacon and tomatoes are a problem for me. Most paleos can eat these but Imho most people with leaky gut can't ...

    Many find that the gfcf processed foods make them feel sick initially. I'm not sure which ones of these they were eating but I did ok with plain foods like GF bread, Tinkyada pasta, plain quinoa, etc. I didn't do well with foods that have a lot of ingredients like Amy's, soups, etc.

    I'm finding that toxic chemicals are a problem too. We have a thread here on contact allergens. tc. x
    MishMash likes this.
  14. camas

    camas Senior Member

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    MishMash, pardon me for butting in, but you might find the Canadian Mastocytosis Society List helpful since it includes what you can eat. I know it's overwhelming and some doctors even doubt the helpfulness of following a low histamine diet, but in my case I already know I strongly react to or have at least some difficulty with most everything in the right-hand column, so it's pretty accurate for me at least. There's also a good discussion following the list that reiterates some of what X just said.
    xchocoholic and MishMash like this.
  15. xchocoholic

    xchocoholic Senior Member

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    Hi camas. Feel free to stick your butt in here anytime. Lol..

    Fwiw, I took at look at that list and I do better with the foods they say not to eat. I can't believe they allow
    gluten and dairy with all the info out about these two. DAN (defeat autism now) researchers must be rolling their eyes over this.

    And telling people they should know in 4 weeks if this is going to help is ridiculous. I felt like crap most of
    the time for a whole year after going on the elimination diet. Sure some of my symptoms were gone but
    most were still there. I didn't start feeling energized from foods for probably two years.

    I became a full blown celiac in 2005, so that was part of it. My gut had to heal. But as a pwc my body had a full toxic load and
    that doesn't just disappear in a few weeks. I still had mercury and nutritional deficiencies 3 years later.

    I suspect my problem isn't so much histamine as the other mediators released from mast cells. And that's why
    this foid list doesn't work for me.

    tc .. X
    SaraM, MishMash and camas like this.
  16. camas

    camas Senior Member

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    Hi X,

    Well, they do kind of qualify the recommendations following the list with this information.

    Despite this diet, for our disorders, typically we find that avoiding entirely or at least limiting our intake of wheat, sugar/sweets, dairy, spices, processed foods, and preservatives, resolves many of our difficulties with food.

    Breads are usually a full AVOID item for us. Patients report tolerating Light Rye Bread without Preservatives, a couple of brands make this bread and it’s typically available in most grocery stores.

    I can get away with a little dairy here and there. I went wild and bought a loaf of gluten free bread this week, and started itching immediately after eating a slice. I have no idea which ingredient prompted that. So I'm back to my regular old wheat bread which I don't think bothers me, but I've never tried giving up wheat entirely for longer than a few months at a time.

    On an unrelated note, I'd read that heat and cold can trigger mast cells. I know I have a problem with heat, but didn't think the cold was a problem. Things are generally fairly temperate here in Portland, but we've had a real cold streak (in the 30s) with plenty of sun. So the other day I was feeling halfway decent and decided to attempt a short walk (10 blocks). I didn't have any PEM at all, but my skin itched and burned all the next day, and then just burned for the second day. Extra zyrtec seemed to help a little, but boy did I learn my lesson about dressing properly for the cold.
    xchocoholic and MishMash like this.
  17. MishMash

    MishMash *****

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    xchocoholic
    Do you live on the coast of Florida? I have visited family and friends in Daytona Beach many times, and I always feel really sick from the mold. I love the sea breeze, the sand between my toes, the cars flying down the beach missing me by inches. But I get definitely ill from the moldy hotel rooms.
  18. xchocoholic

    xchocoholic Senior Member

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    MishMash .. I live on the east coast where we get the ocean breeze most of the time.

    There are GREEN hotels if you want to google these. The only problem I ever had with one of these hotels was that they used too much fabric softener on the sheets and I could smell it for days. Note to self, bring own pillow cases.

    camas ... Sorry for sounding grouchy. I just get irritated when I read that gluten and dairy are ok for certain illnesses after seeing so many people who do better without it. The autism research insititute has been saying for 40 years that these aren't ok for autistic kids. My own reaction to gluten is mostly neurological. Ataxia and seizures .. and I'm a celiac.

    I just checked out ready made GF breads the other day and found yeast in most so I couldn't get any. Have you made your own bread yet ? I'm probably going to try making a flat bread that doesn't require yeast.

    My digestive tract is hosed and I'm nauseas from my kidney infection and antibiotics so I'm looking for easy to digest foods. I haven't been eating grains but I'm too tired to care right now. I still have 4 more days of these meds. bleh ..

    tc ... x
    MishMash likes this.
  19. xchocoholic

    xchocoholic Senior Member

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    camas

    Do you think it was the cold or exercise ? Do you have this reaction from the cold if you're not exercising ? I was thinking walking 10 blocks would stir up toxins.

    It really sucks getting symptoms all the time. Good to hear zyrtec helped. That's my most reliable non drowsy med too.

    tc ... x
  20. camas

    camas Senior Member

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    X, I'm really sorry to hear about your kidney infection. That sucks. Hope you get through the next four days of antibiotics okay and feel better soon. :hug:

    My reaction to the walk could have been a combination of the cold and exercise. Because my face itched and burned the worst and, since it was the only thing completely exposed, I attributed my reaction mostly to the cold. Next time I'm up for a walk, I'll make a note of how I react.

    I think I've ignored my symptoms for so long (other than anaphylaxis, of course) that it still seems kind of surreal find that I react to known degranulators in such a consistent way. After so many decades of illness, it's odd to finally have an explanation. Now if only there were better treatments...
    xchocoholic likes this.

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