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Managing histamine

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Mindy, Oct 3, 2013.

  1. Mindy

    Mindy

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    My symptoms seem to line up with high histamine. Assuming that my worsening difficulty breathing and reactions to food and chemicals is due to high histamine, I have a couple of questions:

    -what types of labs test for this?
    -has anyone tried benadryl and does it help?

    I'm trying nettle tea, but not sure it's helping. thanks
     
  2. Ema

    Ema Senior Member

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    I have high histamine and the symptoms were much much worse when I had undiagnosed adrenal insufficiency.

    Cortisol is an anti-inflammatory and it also stabilizes lysosomal membranes. Together these actions mean that less histamine is released and the system is less reactive overall.

    At my worst, I was reacting to just about everything food and chemical. Now things are thankfully much better though I still take a daily antihistamine like Zyrtec.

    There are lots of supplements that puport to lower histamine. Vitamin C, quercetin and rosmarinic acid, for example, and magnesium can help to stabilize mast cells. Improving methylation with B12 may also help. But honestly, I never found much relief until I got my cortisol level improved.

    Have you considered a saliva cortisol test like the one from ZRT/Canary Club?

    http://www.canaryclub.org/specializ...-zrt-stress-hormone-test-kit-c1-c2-c3-c4.html

    As far as other lab testing, I would check in the mast cell disorders section of the forum (which is also where this post should be so I will move it for you :) ). I had whole blood histamine tested but I seem to recall someone posting that this was not the best testing choice.
     
    Wayne, camas and Star-Anise like this.
  3. Mindy

    Mindy

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    Ema - thanks for the feedback. my dr. suspects adrenal problems as well and we're going to have that tested. in the meantime, what can i do? i'm down to 103 pounds and i'm 5'6". I"m really freaking out and no one local can help me. I talked to my MTHFR consultant on Monday, and he just said anti-inflammatory foods for now and is working on a report.

    In the meantime, I think i need to get these levels down. how long does this take? I'm definetly at my worst and took mg this morning; it seemed to help, but i did react to it.

    And how did you get cortisol under control? Should I be consuming a lot of potassium in the meantime?

    I get a weird pressure in the back of my head and can't breathe.
     
  4. Ema

    Ema Senior Member

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    While I was getting tested, I just tried to eat bland things like buttered noodles and broth and took Zyrtec after I ate. It was awful. I also lost 20-30 pounds over that time.

    Are you having a blood cortisol test or the saliva test? It might be worth your while to have a blood cortisol test ASAP to determine whether or not you need an ACTH stimulation test. Any cortisol level below 18 should be considered indeterminate and a stim test should be done according to my doctor. This might be faster than a saliva test which can take a couple of weeks to come back and it will identify if you have a life threatening adrenal insufficiency.

    You might also consider an H2 antihistamine if that works with your other meds. Sometimes the combination can provide some relief.

    I was diagnosed with adrenal insufficiency and I went on hydrocortisone to replace the missing hormones.

    I don't think it's a good idea to consume a lot of potassium personally without labs showing you need it. Potassium is kept closely in check by the body because it can have serious effects on the heart in excess. If your electrolyte labs are low, one can often supplement with slow release potassium but I would not do this without the labs first.

    I really feel for you as that was a miserable time in my life. I hope that you get some answers and relief soon!
     
  5. Mindy

    Mindy

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    Ema - thanks again. I am miserable and very scared. my last labs did show low potassium. do you know what type of dr. will do this ACTH stimulation test? I'm not getting anywhere with local drs. The one I visited this morning doesn't even have a blood histamine test.

    PS - i've lost about 10 lbs in 2 weeks.
     
  6. Ema

    Ema Senior Member

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    Any doctor can order an ACTH stim test but it is most commonly done by endocrinologists. The problem is that they often perform the test incorrectly and have trouble interpreting it properly so it is important to be well informed about the procedure yourself.

    An allergist/immunologist might be able to evaluate you for a mast cell disorder.

    You can order a basal cortisol and static ACTH level yourself in most states. You order the test through a site like Private MD labs and then have your blood drawn at Labcorp. They email the results to you and the cost is about $80 for those tests.

    You can also google for Labcorp's test menu and it will show you the histamine tests. You can print it off and take into the doctor. But again, I would check the mast cell forum because I seem to remember that other tests were better than whole blood histamine.
     
  7. camas

    camas Senior Member

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    Mindy

    There is a 24 hour urine test for N-methylhistamine. It requires careful collection and storage by both the patient and the lab -- has to remain refrigerated or the histamine breaks down. You really need both a doctor and lab who know what they are doing for this test.

    I've had some luck with the low histamine diet listed in my signature. You might find that it overlaps some with your low inflammatory diet. If you can tolerate the combination of an H1 and an H2 blocker like Zyrtec and Zantac, that will help calm histamine. I can't tolerated any H2s, but am okay with Zyrtec and find that I can also tolerate a little dye free Benadryl now. My doctor also recommended Standard Process Antronex which helps the liver break down histamine.

    I'm sorry you are struggling with your reactions. Been there, and it's not fun. I hope some of the links in my signature might be of help to you. It's a dense read, but I'm also attaching an article on mast cell activation which you might find interesting. There are tables at the end that summarize everything.
     

    Attached Files:

  8. Mindy

    Mindy

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    Ema - hi, one more quesiton, i noticed you suggested an h2-antihistamine. I looked that up and it's things like zantac among others for heartburn, or so I thought.

    What about allegra, zyrtec or even benadrayl? The known antihistamines? Thanks so much.
     
  9. Ema

    Ema Senior Member

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    Yes, H2 antihistamines are generally used for stomach acid/ulcer issues but they can also be helpful for histamine issues in general. The gut is full of histamine where there is an enzyme (diamine oxidase) which breaks it down. You can actually buy this enzyme as a supplement as well though I've never heard of anyone having tremendous success with this approach alone. It's called Daosin.

    I took a combination of Zyrtec and cimetidine (Tagamet) for many months. Cimetidine may also enhance immune function especially against the herpes family of viral infections. It's been used in AIDS patients for this purpose since the late 80s.

    Ema
     
  10. Mindy

    Mindy

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    Ema Ok, so are you suggesting that I start with say Zantac rather than Zyrtec or benadaryl? I'm trying to read up on this and learn more, but if I start this right away I suppose there's a chance for reaction?

    Also - any idea why this problem has gradually worsened over the past month (it started w/sensitivity to meds and herbs all of a sudden), and over the past 2-3 days, it's so much worse to where I can hardly eat anything. I just feel like I can't breath when eating and it lasts for hours. I am getting head pressure on and off as well. Are these typical symptoms of histamine?

    Sorry, I'm just so overwhelmed right now having been introduced to this just 3 days ago.
     
  11. Mindy

    Mindy

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    I actually ordered the DAOSIN by Swanson today at the recommendation of my practicioner (he focuses on MTHFR, not allergies). I wasn't able to speak to him though and things have worsened since the 3 days ago I talked to him. Scary :(
     
  12. Ema

    Ema Senior Member

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    If you feel like you can't breathe, I think you really have to go to an ER. I know it is no fun and they are usually no help, but breathing is a big deal. They are histamine symptoms but they could be symptoms and not actually the root cause.

    I would start with Zyrtec/Benedryl and then add in an H2 med. Just be sure you check it in the drug interaction checker because it can potentiate the effects of other drugs so you have to be careful. It's sold OTC though.

    I would check out this link and see if it sounds like you. There are prescription mast cell stabilizers like Cromolyn that can be helpful along with other meds like ketotifen (which is also being studied for fibromyalgia now!).

    http://www.medpagetoday.com/resource-center/anaphylaxis/mast-cells/a/37978

    Ema
     
  13. Mindy

    Mindy

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    No, they are no help. I've been to my local urgent care once, Mayo Clinic ER this past weekend and the local dr today - each time stating I can't breathe. No one can figure out why.

    I have another appt at Mayo next week, but it's going to be a long wknd since the breathing difficulty is getting worse. I'm set up with a vascular specialist next week b/c I told them I thought my symptoms were from MTHFR issues from taking methyl supplements. Of course, things have really spun out of control since then.

    I'm not really taking anything more b/c I can't! Just probiotics, and trying to take mg and a multi. These seem to help my head symptoms and maybe the breathing too. I'll check out the link. Thanks!
     
  14. ahmo

    ahmo Senior Member

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    Hi Mindy. I don't know how much any of the things that are working for me will help with the severity of your symptoms, but I'll share them. As to why you're suddenly reacting, when histamine level reaches a certain amount, then you can no longer handle it, and reactions follow. I have a major histamine problem. I’ve been using some things recommended by Amy Yasko to mediate histamine: quercetin, butterbur; ornithine & lysine (sulfur breakdown). Also Vit C and Calcium for detoxxing histamines. I eat palm-sized serve of meat 2/day, my only veg is zucchini, w/ lettuce, carrot juice. I’ve been in a massive detox this past week, needing a lot of Ca, as well as Mg, K+...I finally tried adding the Ca to my footbath.
    WOW! I’ve been putting mg oil, Vitamin C, lysine into my footbaths, along w/ clay, charcoal (I do 1 w/ clay, charcoal,
    lysine; a second w/ mg, Bicarb, Vit C, which is where I’ve added the Ca. It was SOOO effective! I also added my K+, which I’ve been needing in the middle of the night for a week. No need after this move to footbath. Today I’ve just tried out putting all my powders (mostly aminos) in footbath. Works a charm. And now I can use cheapo CA carbonate, instead of the hard, hard-to-swallow tablets I’d been using in emergency situations. Homeopathic histaminum has worked for me as well as OTC antihistamines, but I only use it for acute reactions. I’ve never been so on top of my histamine reactions as now. Almost no outbreaks. Best to you, ahmo

    Some resources:
    http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html
    http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/
    http://aminerecipes.com/low-amine-grocery-list/
    http://thelowhistaminechef.com/
    http://criticalmas.com/2012/05/the-low-histamine-diet/ food list

    http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/

    http://www.data.aerzteblatt.org/pdf/DI/103/51/a3477e.pdf Histamine Intolerance in Clinical Practice
     
  15. Critterina

    Critterina Senior Member

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    Mindy,

    I discovered the article entitled Histamine and Histamine Intolerance (Maintz, Am. J. of Clinical Nutrition) almost 6 weeks ago. It explained so much. I am not perfect following a low histamine diet, but I can sure tell the difference when I have something I shouldn't. My symptoms are nasal blockage, decreased lung capacity, and lowered voice, but the symptoms are variable person to person. I was on COPD meds for almost a year and still use my albuterol to loosen my lungs if I need to, but usually less than once a month now that my diet meets my needs. Afrin will help the nose in an acute situation too.

    I used Allegra and it helped, but with my 23andme results I learned it was a cardiac risk for me, so I switched to loratdine (generic claritin). I don't know whether that helps or not. I haven't used the zantac because I have had poor protein absorption, low stomach acid, muscle wasting, etc. and I didn't think it would be a good idea, but I'm willing to learn.

    I gave the articles to my allergist, but he does not see the value of a diagnosis.
    Benedryl is the only antihistamine that has been found to increase the activity of the DAO enzyme, which is the one that works in the digestive tract.

    I don't have masto and I just limit histamine, not tyrosine, which is a bit more liberal than the one in camas' signature. My main things are: avoid tomatoes, peppers, and spinach, aged dairy, aged or fermented anything, pre-cooked meats, and the spices listed there.

    I also have adrenal and thyroid problems, not sure what we're going to do about those, I'm on thyroid, but my NP would like to get my adrenals working again, so thinks that any supplements will be a negative feedback to decrease any output that they might attempt. I was low from pregnenelone to cortisol, dhea to estrogen. I supplement OTC progesterone so that I don't run out of cortisol again, but don't have a solution. It helps both inflammation and blood sugar stability.

    It's a long road back, but I'm hoping that when the other things start working, maybe I'll have the gut juices and gut bugs to digest and absorb what I eat and I can go back to the person I was two years ago.

    Good luck to you!
     
  16. Valentijn

    Valentijn Activity Level: 3

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    Do you have a pulse oximeter? It can help to show if your difficulty breathing is having a serious impact.
     
    Ema likes this.
  17. Mindy

    Mindy

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    Thanks for all the great info. I know I posted this on the methylation board, but this is so overwhelming b/c it has happened as a result of taking methyl supplements as recommended by a dr. who doesn't understand the full scope, treated for MTHFR a1298 only.

    I reacted negatively, I've now learned, based on other mutations. None of my mutations appeared to be "active" prior to taking the supplements; now they are. I've also learned that I wasn't even in need of treating for methlation issues. I was relatively healthy; my only issues were chronic UTIs and infertility. Priority to those methyl supplements I felt great. I hadn't missed work in nearly 2 years, never sick.

    Now I'm a mess and have hardly been able to function at work on some days. Work travel is a nightmare. I'm just overwhemled and can't believe how things are spinning out of control, and why.

    Critterina - 2 years you've been dealing with the histamine stuff or all health issues? I'm curious to know how long it might take to resolve this. I will look into the pulse oximeter and the foot bath.

    Taking mg, ca and a multi do seem to help reduce the symptoms. but i'm taking very small amounts b/c I make be reacting when I initially take them. Also sipping on nettle tea. ahmo - I like the footbath idea. Just dump the supps into hot water so they dissolve?

    I'd like to try an OTC like claritin or benadryl, but am afraid I'll react to the inactive ingredients. I suppose just start with a small piece? Thanks again...the responses help so much during this scary time.
     
  18. leela

    leela Slow But Hopeful

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    Ema, could you explain how you take the two kinds (H1 H2)? Do you take them at the same time? What do you do about the sleepy/wakey effects? So far all I've been doing is an H1 at nighttime because it's drowsy, but it does not seem to be doing anything for the histamine problem (great for sleep though!). I have scoured the internet and I cannot find reference to how to combine the two.
     
  19. Ema

    Ema Senior Member

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    I took the cimetidine 3 times a day at 400 mg on an empty stomach. I took Zyrtec either once or twice a day, upon waking and at bedtime.

    During the worst of it, I waited and took my Zyrtec with lunch instead as that was my first meal of the day.
     
  20. UM MAN

    UM MAN

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    Tagamet is known to lower your DAO production. It would be my last choice for H2.
     

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