Histamine intolerance Diagnosis

31 May

Hello everyone,

My name is Nele, I’m 30 years and live in Belgium. On december 3rd 2009 I was diagnosed histamine intolerant. My story prior to the diagnosis contains more downs then ups tho.

As a child, I had excema. I was in treatement with a dermatologist who blamed my problem on a thick skin. Later, in my early teens, I couldn’t digest shellfish anymore. They made me horribly sick, and I started avoiding them. When I went on to university, I found that alcohol gave me severe respiratory issues, sometimes so bad that I would pass out. I was also diagnosed ADHD around that time. I found myself having a runny nose most of the time, always carrying handkerchiefs around with me. I suffered from migraines a lot, and had constant aching joints and muscles. Whenever I would visit a doctor, and explain my symptoms they would simply shrug it off, or find it unnecesary to do further research.

Last year I took massage classes, and found that everytime I was being massaged I got a stuffed nose, and had issues breathing. I was too afraid to mention this to my teacher, all too often had doctors told me my symptoms were in between my ears.  I began my search.  I found out that when someone gives you a thorough deep massage, you break open mastcells causing them to release histamine into your bloodstream. I took my suspicion up to my doctor, and he boldly told me not to put stuff into my head. My reactions continued, and I was getting a stuffed nose, and issues breathing after my meals. I took it up with the doctor again, he finally drew some blood for allergy tests. Off course, all came back clear and ‘I should stop putting stuff in my head’. I was getting sicker and sicker, and decided to go see another doctor. She listened to my symptoms and immediately referred me to the university hospital nearby, where they have an Allergy Department.  So on december 3rd I undergo the scratchtest, and was diagnosed histamine intolerance.

It was a relief and a burden at the same time. So I wasn’t putting stuff in my head! But so many questions.. All the allergist had done was give me a list titled ‘pseudo – allergy diet’  and advised me to stay away from red wine, cheese, tomatoes, preservatives, colorants and flavor enhancers. Trying to follow the diet I quickly experienced there was much more I reacted too. I scratched potatoes from my diet, meat, egss and much more. I contacted my allergist and he wanted to see me again. This time he asked me to bring with me all the foods I reacted too, so we could do a scratchtest with all the ingredients. Full of hope I went again, with a basked full of ingredients, but only to hear that there was no time to test me. The allergist couldn’t answer a single question I had for him, and disregarded some of my stress-related symptoms as hyperventilation. It was the worst hospital visit ever, I cried my heart out.

I felt like I was all alone in the world, and noone understood histamine intolerance, or didn’t want to understand it.  Thanks to a wonderful friend who’s histamine intolerant too, I hung in there. She helped me so much, mostly just by being there. I can not thank her enough for it.

I’m meeting a food expert specialised in histamine intolerance in June. I do not keep my hopes up to high, since I have been disappointed all too often.

My symptoms vary a lot: allergic rhinitis and sinusitis, aching joints and muscles, constant low blood pressure, tiredness, rash, chestpains… My diet is very small now, as I personally can’t have things like potatoes, onions, leek, garlic, cauliflower, brocolli, and type of beans, any type of nuts or seeds, no yeast, no milk, ..and the list goes on.

I want to keep this blog for people like me. People who feel they have to climb a mountain every day again and again, and they have to climb it alone. People who have had bad experience with hospitals, and doctors who do not understand what an impact histamine intolerance has on your life.

You’re not alone. Even tho most of us don’t even live close by eachother, you’re not alone. I will write my experiences with histamine intolerances down, how I experience it, how it affects my social life, etc.. And hopefully you too will find the strength to keep going. Because you’re not alone!

‘A healthy person can have over a 1000 wishes, while a sick person only has one…’

with love,

Nele

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63 Responses to “Histamine intolerance Diagnosis”

  1. Leeanne June 1, 2010 at 9:31 am #

    Hi Nele,

    I’m histimine intolerant too, although not to the extent you are. My symptoms come and go and I haven’t managed to work out the rhyme or reason to them yet. All I know is that when my skin flares up or have trouble breathing, then it’s back to basics with my diet (chicken, apples, rice etc) til things get back on an even keel.

    Thank you so much for starting your blog. I’ll check in regularly to see how things are going for you. My doc is unfortunately much like your own and everything I know, right down to my diagnosis has been taught by people in the same situation as us. Is shouldn’t be that way!

    Take care of yourself xxx

    • histamine intolerance June 1, 2010 at 10:30 am #

      Thank you Leeanne! I think a lot of people feel like they stand alone, and aren’t getting any decent help. I hope by blogging about what I personally experience it can help other people in any way they see fit. Keep strong!

  2. nierika78 June 1, 2010 at 8:00 pm #

    Fijne blog! Hopelijk kan je zo een hoop mensen wat steun geven en zelf je hart luchten! :)

  3. Anita June 3, 2010 at 9:13 am #

    Very good idea! In the meanwhile they KNOW at least that there ARE intolerances and such things, while a few years ago people were even less alone with the issues..
    Hope you can write down and exchange experiences with histamine-intolerant people. Good luck, sweetie!

    • histamine intolerance June 3, 2010 at 12:34 pm #

      thank you anita! You are, intolerances are underestimated by a whole lot of people.. I’d love to hear your feedback too, on my stories! It would definetly help me deal with certain situations, and I hope others too

  4. Tere June 3, 2010 at 5:14 pm #

    I spoke about you to my herborist a few days ago. She wondered if you ever consulted a naturopath about your issues and said that naturopathy is very diffused in Belgium so you shouldn’t have issues finding a good naturopath. She mentioned the Kousmine system and said that a hydrocolon therapy could also be of great help… did anybody ever mention these options to you?

    • histamine intolerance June 3, 2010 at 5:28 pm #

      no, they didn’t… but I’m definetly gonna look it up! I have an appointment with a food specialist soon, and make sure to ask her too :o) Thank you!!!!

      • Tere June 3, 2010 at 11:35 pm #

        Oh glad I checked this page again cause I didn’t get a notification when you replied! :) You are welcome… I honestly hope this can be of some help!

  5. Andrea June 29, 2010 at 1:40 pm #

    Hi Nele,

    Thank you so much for your blog. I suffer from the same symptoms that you suffer from including rhinitis, violent food reactions, poor medication reactions, weight loss, anxiety – and believe that I am histamine intolerant. I am having a difficult time getting a diagnosis so far as I live in California where the doctors have apparently not even heard of histamine intolerance and do not offer the blood test. I am also planning to start a blog to raise awareness because it is ridiculous that a person can visit as many doctors as I have during the last year, get so much bloodwork and allergy testing done, and still get no explanation. I cried when I found out about histamine intolerance because it makes so much sense and puts all of my strange-seeming symptoms into a clear and understandable context. Thank you so much for sharing your story and I hope to stay in touch. I can’t wait to get well and live normally again.
    Best wishes!

    • histamine intolerance July 2, 2010 at 6:13 pm #

      Hello andrea,

      I’m happy you found my blog comforting and hope you can find some answers soon. What I found helpfull for me, in the beginning, was keeping a food diary… that way you can eliminate that what you react too, and see a doctor with a lot more information! Please don’t just follow any diet… getting a diagnosis is very important, altho sometimes its just soooo hard getting one. Try looking for nutritionists…they often recognise food intolerances easier then allergists (off course, not always). My nutritionist saw that I’m not only histamine intolerant, but I’m also gluten intolerant, caseine intolerant and have fructose malabsorption. But again, altho the road might be painfully long… try getting a diagnosis. Browse through some fora, maybe someone out there knows someone who knows someone…
      And if you feel the need to talk, you can always contact me at icecoldeyes@gmail.com

      All the best, and stay strong!!
      nele

    • Misybat June 9, 2012 at 5:08 pm #

      You might look into Dr. Jeremy Kaslow in Orange County, CA. I have had several people that I have ran into online praise him as saving their lives. I think he deals with people with histamine intolerance along with other medical conditions. He as been able to help people that western medicine has not be able to treat. Hope that helps.

  6. Norine July 5, 2010 at 12:24 pm #

    We believe my husband is histamine intolerant from all I have read but can not find any place in the United States where he can get the blood testing done. Our new naturopathic doctor is willing to draw the blood for the test but where in the states can we get this done. Any info apprciated. Thanks

    • histamine intolerance July 5, 2010 at 12:37 pm #

      A blood test like there is one for allergies doesn’t exist for histamine intolerance. You can get your level of DAO tested, or diamine oxidase. This is the enzyme that should break down Histamine.
      I never had a blood test either, I had the scratch test where they punctures your back with tiny holes an dput fluids of all sorts in them. I reacted pretty seriously to histamine, but off course, this is by all means not a good test.
      You could ask your doctor if he/she can send out blood to a lab that tests for DAO’s. In the meanwhile a food diary is a good thing to keep.. write everything down, even till the smallest reactions and it can help you understand why and when he reacts to what.
      Don’t give up the search!

  7. Norine July 5, 2010 at 12:49 pm #

    I understand about DAO level being tested, that is what I meant. So far can’t find any lab or place in US that tests DAO level. That is what I am looking for, some place that will test the level here in US. Thanks.

    • histamine intolerance July 5, 2010 at 12:56 pm #

      I’m afraid I can’t help you there..
      But maybe you can contact these people? This is Dirk Brudka’s clinic, he works with histamine patients, and as far as I’ve heard he’s doing extremely well with it

      http://www.histrelief.com/3/SYMPTOMS-and-TESTS.html

      And this is the website for my own nutritionist, she also specializes in food intolerances.. she can be contacted by email. She’s the biggest sweetie and may be of more help. She works with a professor in Antwerp who deals a lot with HIT people… maybe one of them is able to refer you to someone in the us. I’m so sorry I can’t be of more help to you.

      http://www.optinutrics.com/EN/index.php

      And this is the allergy forum of the UK, I know a lot of people all over the world visit that forum…maybe you can find someone there that can help you..

      http://forum.allergyuk.org/viewtopic.php?f=11&t=275

      Hopefully you’ll find someone soon..I have my fingers crossed for you!

  8. Susan Clark September 20, 2010 at 8:27 pm #

    Hi, I also live in California. I have just been diagnosed with HI by a Kaiser Allergist who apparently bothers to read research studies. We are in the begining stages of treatment. I don’t think he knows much about it, but I’m hopeful he is willing to learn from colleagues that do. For those looking for legitimate info, the two best source I have found are:
    “Histamine Intorlerance” in a 2007 issue of The American Journal of Clinical Nutrition. and…
    The Histrelief.com website which is mentioned above. This medical clinic in London is especially good in cautioning about placing too much reliance on “alternative, wholistic approaches” because it is too easy to get inaccurate info based on incomplete science.)
    My primary symptom is hard-to-treat asthma. I believe in my case it is genetic because it would explain my father’s death at 48 and his mother’s death at 64. Reducing molds in my home via dehumidifyers and eating a low-histamine diet has helped control symptoms to some extent, but I seem to be sensitive to the slightest misstep. I may yet be heading to London!

    • histamine intolerance December 5, 2010 at 4:56 pm #

      I have heard extremely good things about that clinic! Hopefully things will work out for you soon, and that things will improve. Remember to stay strong, and don’t test in your diet! With me, the slightest misstep can cause a major breakdown as well..

    • Ash Bennington November 14, 2011 at 3:52 pm #

      Which Kaiser in California? What is the allergist’s name? Thanks

    • PatriciaT March 29, 2012 at 5:23 pm #

      Could you give me more information about the medical doctor? I live in Los Angeles. I believe I have HI. I can’t find anyone who tests for this.
      Thank you so much!
      Pat
      Pat5002@gmail.com

  9. Della October 26, 2010 at 2:01 pm #

    Hi Nele

    Thanks for posting about your histamine intolerance. It’s a hard road I know, because I’m on it also. I will keep following your blog. Right now it’s the middle of the night here and you guessed it……..I can’t sleep, another legacy of histamine intolerance!

  10. Therese January 3, 2011 at 5:25 am #

    I seem to have the same problem and my allergist suggested that I get allergy shots for my severe allergies (cats, dust mites, cockroaches, and weeds) and she put me on doxepin (anti-depressant) to slow down my system since I had chronic diarrhea.

    I am almost 100% well now, but if I eat oranges I get sick again. There are probably many other things I can’t eat, but I try to keep my diet simple and healthy.

    I just realized that when I was a child I had terrible eczema and my grandmother cooked meat on Sunday and we ate it for the next three or four days which probably increased the amines. The eczema went away when I left home.

    Good luck to everyone.

    • histamine intolerance March 15, 2011 at 1:50 pm #

      Darn those leftovers ay? Eating things as fresh as possible and freezing leftovers right away keeps the histamine down. Carefull with anti-depressants tho, some are known to be histamine liberators!

  11. Brita February 5, 2011 at 2:00 am #

    Hi all,

    if you have significant issues with histamine, you should look into “Mast Cell Activation Disorder.” Treatments include H1 and H2 histamine blockers and mast cell stabilizers (cromolyn sodium in the USA – brand name: “Gastrocrom” or outside the USA – Ketotifen).

    There is a new article in the Ameican Joural of Allergy and Immunology on this condition re: proposed diagnostic criteria.

    There is also a gret website on the US which lists the doctors who are focused on this http://www.tmsforacure.org/mastocytosis.shtml

    I had severe issues (flushing, nausea, cyclical vomiting, swelling) which kept landing me in the hospital but i am doing much better on Gastrocrom and high doses of H1 and H2 blockers (though I do hate being on so much medication). I am seeing who many feel are the top experts in the field at Brigham & Women’s hospital in Boston, MA next week…wish me luck!

    • histamine intolerance March 15, 2011 at 1:45 pm #

      how did it go? And thank you so much for sharing this info!!! The more info we gather, the better!

    • Eric September 23, 2011 at 1:43 am #

      Hi-
      This is intended for Brita – I have no idea if she will see this- My girlfriend is suffering from this syndrome and we live outside of Boston- I am trying to find a doctor for her- can you please tell me who you saw at Brigham and Womens?
      I am at zenpeaceandfun@yahoo.com

      Thank you in advance
      Eric

  12. Tamiya King June 16, 2011 at 8:44 am #

    this is sooooooo helpful! i’ve recently discovered that i am histamine intolerant, and, like you, went to doctors who told me “everything was fine.” and, since my intolerance is severe, i have to stay on a very restricted diet, which can be extremely daunting. thank you so much for this.

    • histamine intolerance July 19, 2011 at 9:35 am #

      have you tried Ella Elizabeths red wine headache cookbook? its bliss, and gives easy going recipes even when you’re not a fab cook (like myself :) )

  13. amy July 19, 2011 at 1:22 am #

    Hello….I was so happy to get a HI diagnosis, to find a reason why I have had stomach problems, acid reflux, and hives. I tolerated this issues and started to sort of know some foods that caused problems….but six months ago a new sympton started Facial swelling. Mainly toungue and lip. This landed me in emergency rooms….where I was never treated well because I didnt understand what was happening I had tested negative to all skin picks…..
    Does anyone else have swelling??
    Now I know it has been a HI all this time….but now what can I eat???

    Are any cheeses safe?

    What meats?? Someone please help me.

    I have an appointment with a dietitian but not for almost six months??

    I am desparate

    • histamine intolerance July 19, 2011 at 9:33 am #

      Has no one given you a dietary list? can I ask where you live amy?

      Angio-oedema is quite common, have they provided you with an epipen?

      it is possible that your symptoms get worse after a while. After all, your body’s intake on histamine continues..
      Cheese in general is a no-no. All fermented foods are a no-no. You could try young goats cheese (without rims), feta (without olives-check for additives!!), mozarella.

      Meat is something to be carefull with. Chicken and poultry is histamine ok, everything else has higher levels of histamine. Be extra carefull tho, as the longer meat is left out off the freezer, the more histamine is build up in it!!

      Skin pricks usually do come back negative when you have HIT :) Blood tests looking for the amound off Diamine oxidase can be ever so helpfull to determine how bad HIT you are (check out purehealthclinic run by Micki rose) as can be a blood histamine level test.

      If you want, I can email you my dietary list, but please please make sure to get proper testing. Never exclude nutrients from your diet based on thought and doubts, as your body does need them!

      • bardot January 8, 2013 at 1:08 pm #

        hi. i am in the UK. you mention a diet list of foods. Is it possible to have a copy. i am getting so many contradictions and waiting to see a dietician. if not would you be so kind as to assist to let me know can/can’t have as per below:

        can you have lentils, chickpeas, butter beans, cannelli bean, red kidney, pure peanut butter, black bean?

        Egg- cooked you can have egg white and yolk eg omlette, raw just yolk? what about meringue?

        Fish – not clear here some say yes and other no or with restrictions

        meat stock – home made – this ok?
        bought stock – any recommendations

        would you have a list of brands/names of cheeses can have?
        ps, cottage cheese can you have the ones with chives in eg.

        can you have mango, grapes, watermelon, lychee, lemon, lime, blueberry, fresh/cooked apricots, cherries, peach, nectarine. Mixed messages on these

        Dried coconut? fresh coconut? coconut oil?
        vanilla, essence – Ok?
        coffee ok?
        red bush tea?

        Breads? any on the shelf ok?
        oats? this def ok?

        can you or cant you have: potatos, green/yellow peppers, corn (loose or on the cob), cucumber, radish, leek, lettuce, cabbage, peas, green bean?

        honey?
        home made jam? how long will it keep as well?

        fresh garlic, ginger and herbs?

        hope someone can clear these up

      • histamine intolerance February 26, 2013 at 12:20 pm #

        Oi, my diet would be very different from yours, as I also have to avoid grains and lectins. I can’t have anything bean related as they are extremely high in lectins. Egg yolk ought to be fine histamine-wise, i’d avoid eggwhite all together.
        I can tolerate fish IF it is line caught and frozen on the boat immediately. Try finding eco-sustainable companies for this.
        Carefull with meat! The longer its left out after the animal has been slaughtered, the more histamine builds up!
        Anything else you mention I cant have due to my cross-intolerances. here is what I feel should be safe: Plain cottage cheese, mango, lemon, lime, pectarine, peach, cocnut oil, cocnut milk, oats; green/yellow peppers, corn, cucumber, leek, lettuce, cabbagen peas, green beans, ginger, herbs..

        Please keep in mind everyone has a very different dietlist! Your tolerance level might be very different to another persons. If you want to try something, try in a tiny bit, and see how you feel. Don’t overdo it, be carefull, and consult your doctor when you feel it is making you ill!

  14. Tanicca October 21, 2011 at 9:17 pm #

    I am so glad to finally find people who understand what its like to feel sick and like no one understands or believes you. I had taken me 16 months to get diagnosed with Histimine intolerance. I’ve seen so many doctors and so many dissappointments having my hopes crushed everytime with words like thats not really my area or I think you should see a psychistrist or the test results were negative. When I had vague symptoms like Shortness of Breath, hot flashes, tongue ulcerations, abdominal bloating,ect. I was only diagnosed because I refused to accept that I was crazy and that I listened and trusted the signals that my body was giving me. I knew that my symptoms were all worsened by eating and thought for a long time that they were food related but when I kept getting negative IGE test results and Celiac Panels it just didn’t make any sense to me. But cuting out the foods seemed to ease the severity of my symptoms. I was finally diagnosed a few days ago, after a postive histimine skin test and food elimination diet. I am still trying to learn a lot about this and I know my journey isnt over yet but so relieved to finally at least have a diagnosis, because how can you treatment something when you have no idea what is it or how. Mostly I just wanted others to know what I have experienced so that if they are met with critism and disregard they will not give up. You have be your own advocate and most of all never give up.

    • histamine intolerance November 14, 2011 at 10:23 am #

      Isn’t it so? Some doctors will only go as far as what they have learned! Having to give up something as elemantary as food, without IGE tests to show for it is easily called being a hypochondriac! Good on you for hanging in there, and putting your fists up for a fight!!! The more people that get diagnosed, the easier it will become for others in the future!

  15. Delfina November 7, 2011 at 2:17 am #

    Hola Nelle, soy de Argentina y creo que yo también tengo histaminosis. Digo creo porque aquí todavía no llegó el test. Tengo 20 años y desde que tengo uso de razón sufro de migrañas. Soy alérgica a muchas cosas, como el polvo, el polen y los mariscos ( una vez se me cerró la garganta por comerlos). Desde hace dos años comencé a tener dolor de cabeza diario, acompañado con estreñimiento por varios días. Me llené de acné y me empeoró una alergia que tenía en las manos desde chica llamada dishidrosis. Tengo mucho cansancio desde que tengo uso de razón sin ninguna causa aparente. Y también sufro de insomnio. Fuí a una gran cantidad de especialistas y médicos, incluso a un psicologo creyendo que mis problemas de ansiedad pudieran ser la causa. Fuí a una neuróloga que me dió para tomar topiramato por 6 meses, pero no pude seguir tomándolo ya que mis dolores de cabeza empeoraron, bajé mucho de peso y me volví depresiva porque mis síntomas habían empeorado. Hace poco comencé un tratamiento con un homeópata que me dió unas pastillas para la circulación, que si bien no me quitan el dolor de cabeza, me lo atenúan y me permiten poder llevar una vida más normal.
    Investigué mucho por mi misma ya que ningún especialista pudo ayudarme y daba la impresión de que creían que era hipocondríaca, en mi casa me decían que estaba siempre quejándome y ya casi no podía salir con mis amigos porque no dormir a la noche luego me traía migraña. De tanto investigar di con el sitio de un suplemento alimentario con la enzima DAO que ayudaría a degradar la histamina acumulada en el cuerpo. Pero todavía aquí no llegó, en mi país esto todavía no se sabe, por eso es que tengo la esperanza de que algún día llegue y mi vida cambie. Y pueda ser feliz. Estoy cansada de sentirme mal. Te agradezo por haber escrito este blog. Realmente me sirve de catarsis poder compartir con alguien mi problema y que por fin alguien me
    entienda. Gracias.

    Hi Nelle, I’m from Argentina and I think I have also histaminosis. I say think because this test has not arrived yet. I have 20 years and since I can remember I have migraines. I’m allergic to many things, like dust, pollen and seafood (once I closed the throat by eating). Two years ago I started having headaches every day, accompanied with constipation for several days. I was filled with acne and allergies worse than I had in my hands from girl named dyshidrosis. I went to a lot of specialists and doctors, including a psychologist thinking that my problems could be causing anxiety. I went to a neurologist who gave me to take topiramate for 6 months, but could not keep taking it because my headaches got worse, I lost a lot of weight and I became depressed because my symptoms had worsened. I recently started treatment with a homeopath who gave me some pills for circulation, while not take away my headache, fade me and allow me to lead a normal life.
    Lot of research on my own because no specialist could help me and gave the impression they thought I was a hypochondriac, in my house told me I was always complaining and almost could not go out with my friends because do not sleep at night then brought me migraine . From time to investigate I found the site of an enzyme food supplement to help DAO degrade histamine accumulated in the body. But it still have not reached, in my country this is not yet known, which is why I have hope that someday, my life changed. And can be happy. I’m tired of feeling bad. . I really serves as a catharsis to share with someone my problem and someone finally understood me. Thank you for this blog. ( and sorry for my bad english!) jaja bye

    • histamine intolerance November 14, 2011 at 10:21 am #

      Hey Delfina!

      You should try contacting Micki Rose at the purehalthclinic.com. She will be able to help you find labs and tests nearby! Good luck to you!!

      • Delfina November 16, 2011 at 4:26 pm #

        I will contact her, thak you so much! kisses from Buenos Aires

  16. Mariël November 7, 2011 at 7:55 am #

    wow, this is a great blog! (not much time now but I’ll be back later today!)
    I was diagnosed with histamine intolerance a few days ago and it’s great to find some personal info!
    I have one question: how is your ADHD since you’re sticking to a diet? I was diagnosed with ADD half a year ago and I find that in periods when my ‘allergies’ are worst I’m totally ADD (no H for me!). And I think that antihistaminics work better for me than the Ritalin I’m taking… What about you? Doctors don’t seem so see any connection. While for me it seems so obvious!
    Thanks for all the info and effort so far!
    Groet, Mariël

    • histamine intolerance November 14, 2011 at 10:20 am #

      Hey mariel!

      Ik denk dat er een duidelijke link is tussen histamine intolerantie en ADHD. IK heb helemaal geen last meer van ADHD sinds ik op het dieet sta, en voel me gewoon veel beter. Vooral additieven, kleurstoffen en bewaarmiddelen zijn dooddoeners..
      Opletten met rilatine he, dit middel werkt verslavend, en is echt niet gezond!
      Ik ga proberen een paar links te vinden omtrend de relatie tussen ADHD en histamine intolerantie, en plaats ze op deze blog! Idd, dokters zien het verband niet terwijl het voor veel mensen overduidelijk is..
      Veel succes met je dieet!

      Nele

      • mariel November 14, 2011 at 10:56 am #

        Hai Nele,
        Dankjewel voor je reactie. Ik vind het zó vreemd dat ook voor mij de relatie zo duidelijk is terwijl de allergoloog, psycholoog en psychiater geen idee hebben! Een allergiepil werkt voor mij véél beter dan de ritalin. (Ja, ik weet dat Ritalin niet goed is. Toen ik met de Ritalin begon ben ik meteen een meditatiecursus gaan doen omdat ik liefst zo snel mogelijk wil stoppen met die pillen).
        Nog één vraag: heb jij je DAO laten testen? Ik vind het vreemd dat ik een histaminevrij dieet krijg zonder zo’n test te laten doen. (En voor mijn gemoedsrust zou het goed zijn om bewijs te zien…)
        Nogmaals dankjewel voor alle info hier, het is zó fijn om ervaringen te lezen!
        Groet, Mariël

      • histamine intolerance November 14, 2011 at 11:01 am #

        haaai!

        Vertel mij wat, ik weet het! De enige problematiek die dokters en psych’s vaak kennen rond voedsel is allergieen, of psychologische voedselproblematiek. Maar dat je lichaam nog op een andere manier kan reageren, is vaak niet geweten. Je mag niet vergeten dat intoleranties nog in zijn kinderschoenen staat. Voedsel is zo algemeen als vanzelfsprekend aangenomen, dat wanneer je niet kan eten zonder daar echt een medische redenen voor te hebben, je snel als psychosomatisch wordt beschouwd. Ik heb alle mogelijke testen laten doen, en ik krijg nog steeds te horen ‘ale, doe niet onozel en eet gewoon’.
        Ik heb mijn DAO’s laten testen en mijn histamine bloed waarden bij Micki rose van Purehealthclinic (http://www.purehealthclinic.co.uk/) Zij is het ook geweest die mijn gluten gevoeligheid heeft vast gesteld. De testen gaan echt supersnel. Ze zijn wel wat duurder, maar dan heb je tenminste iets om voor te leggen bij al die ongelovige dokters en dergelijke..

      • mariel November 14, 2011 at 12:03 pm #

        tsja, 15 jaar geleden zei ik al tegen mijn huisarts dat ik vermoedde dat ik ziek werd van mijn eten. En vervolgens werd natuurlijk geen enkele klacht meer serieus genomen. ‘Zorg maar dat je genoeg beweegt’ zij hij bij werkelijk elke psychische of lichamelijke klacht waar ik mee kwam… Ik ging zelf ook denken dat het allemaal tussen mijn oren zat.
        Nu is ie met pensioen en mijn nieuwe huisarts luistert wel :-) .
        Ik heb bij de allergoloog gevraagd of ik DAO kan laten testen. En wacht nog op antwoord.
        Maar ik bookmark je link alvast voor het geval ze niet willen!
        (oh, en ik heb net ‘the read wine headache cookbook’ besteld.
        Ik kan niet wachten :-), dankjewel voor de tip!

  17. Sathya December 22, 2011 at 4:10 pm #

    I have skin rashes (spongiotis dermatitis) with constant monitoring, have found out that I am allergic to milk, egg, tomatoes, spinach, wheat, oat..etc

    have consulted so many doctors but all in vain.

    In USA, is there any place where they test for histamine intolerance?

  18. Jacqueline Crandall January 30, 2012 at 7:13 pm #

    Wow… after having a bad attack this morning when I woke up, I hit on the idea of researching histamine intolerance after seeing an ad for Histame in the Living Without magazine. I started crying because I realize I have suffered from this all my life (I’m 57) and have finally found a diagnosis (even if it’s self-diagnosed) that explains all of my life-long symptoms. I do remember being checked for candida about 25 years ago and the diet was similar. But thanks for all the blog info; I’ll look forward to more.

  19. Sheila February 23, 2012 at 1:09 am #

    Hello everyone, my symtoms started last June with severe angioedema, meaning extreme facial swelling, hives, welts, skin peeling, and you cannot imagine the painful burning and itching. I do have trouble swallowing and breathing from time to time. After many specialists and no answers I started doing research. I changed my facial creams and makeup several times. I have been told nail polish is the culprit even though I insisted it was systemic. Not one Dr. asks about my diet. Now my dermatologist has stepped in to help and is doing research as well. When she finds something she calls and I do the same with her. Finally, I began to address my diet. Every morsel that I put in my mouth has a high histamine level……..fish, yogurt, soy milk, chocolate, beer, berries and nuts, grapefruit and more. I can actually feel the reaction coming from my toes up and feels like a cold flushing. My facial skin is very reactive and this happens daily, more so at night to which I concluded it to be a buildup of histamine. I have been taking a Zyrtec and Zantac every morning and benedryl at night which keeps the extreme attacks at bay and carry an epi-pen. I am now on day 3 of a histamine free diet so I will wait and see, but must mention I am starving (craving) my old diet. Perhaps, I should also mention that I am 62 and have other medical issues and have to take prescription drugs which I loathe! Keep the faith all, hopefully some medical specialist will all of remarks. Good luck!

  20. Jackie March 23, 2012 at 9:29 am #

    I am so relieved to find this. Just so relieved. It’s been an awful, horribly long 3 years. And when I read about histamine intolerance just yesterday I cried because all the pieces fit together.

    If anybody reading this is in the UK, especially the London/Oxford areas, please contact me. I’m here on a student visa and totally intimidated by the NHS and how to go about getting an appointment with a specialist.

    My email is jacjrat@gmail.com and I would love to hear from you. Please get in touch so we can have a support system, it would mean so much to me.

  21. PatriciaT March 29, 2012 at 5:38 pm #

    Is there anyone in Los Angeles, California, who can test for DAO levels? I feel I am a textbook case of Histamine Intolerance. I am having trouble finding a way to get diagnosed and tested.

    I had allergies all of my life. Then a doctor recently had me tested for allergies with blood tests. I had NO allergies whatsoever. I have been bothered my whole life by “supposed” allergies.

    I do know this. I react badly to MSG, sulfites, and red dye #40. I also react to many foods and environmental things and weather/ humidity/temperature. My doctor is saying at this point that I am a hypersensitive person. I am not particularly happy with this diagnosis. Can anyone help me? I sure would be so happy to have some clues on what to do. I have spent a lifetime trying to feel better. I have close to 100% of the symptoms of Histamine Intolerance.

  22. Michelle April 24, 2012 at 4:14 pm #

    Hi Patricia – I like just about everyone else on this blog, spent years trying to figure out what was causing my symptoms, and like everyone else was misdiagnosed over and over. I had a GI doctor tell me because all of my tests came back negative then the problem was obviously stress! My advise is to keep looking. I had been seeing an allergist for my seasonal allergies for 6 years. He had never heard of the two problems I’m dealing with, Oral Allergy Syndrome and Histamine Intolerance. I had a very bad reaction which put me in the emergency room, their advise, follow-up with your allergist, so I did; only this time I went with my gut and found a new doctor. I sat down in his office and explained everything that’s been going on for years and he said those two words – Histamine Intolerance! Keep at it, call around, before making an appointment ask if the doctors are familiar with Histamine Intolerance, if not, move on. And an FYI, my new doctor told me this afflicts 1%-2% of the population; he sees 1 – 2 patients a week with this problem. It’s mind boggling to me that more GI’s, Allergists and Immunologists haven’t clued in. Just know it’s not in your head!

  23. Kerry Collard May 7, 2012 at 11:53 pm #

    I couldnt read through every post so I am not sure if anyone prior had mentioned the product HISTAME. It used to be only available in the U.K. but in the last few years it has been available in the U.S. IT WORKS! It supplements the enzyme DAO to brakdown the histamine in your blood.

    I also have been literally debilitated by this at times and after keeping a food journal for two years, i narrowed it down to all foods with yeasts, fermented foods, dyes, preservatives, sulfities, alcohol and the list goes on and on!

    My heart races so much that my primary doctor was so nervous she had me see a cardiologist and a vascular surgeon. I FIGURED IT OUT MYSELF! My heart would start racing after eating these foods. Some avoidance, coupled with supplementation of the HISTAME product has been a lifesaver!

    I hope this helps!

  24. Adam July 4, 2012 at 5:50 am #

    Great blog, thanks. I may be at the beginning of this diagnosis road as well. Has anyone found a good testing lab for these issues in the U.S. yet?

    cheers,

    Adam

  25. menno August 2, 2012 at 12:18 pm #

    Hi Nele,

    your blog is a good initiative. I don’t know if you already found relief for your intolerance. Your story is pretty similar to my sister’s, who has histamine intolerance and serious lactose intolerance (and also has been told for 20 years the reason she threw up after certain meals was purely psychological :( `psychological’ is the doctor’s word for `I don’t know, but can’t say that after 15 years of study’). She eventually found a specialized dietist in Bruxells, Belgium, named Christine Toback, who helped her a lot. I think she is specialized in this kind of problems and takes it really seriously. see for info http://www.optinutrics.com/NL/index.php
    and she also has a good book on this topic `eet wat bij je past’. Anyway, the idea is that after a 2 week histamine free diet you can add some types of food and see what gives problems and then try to balance your diet such that histamine levels remain low. It is not so easy to consciously erase all `bad food’ but if someone has real problems it is worth the effort. Hope this might help anybody who is looking for a dedicated specialized dietist or for more in depth information.

    I myself have never been officially diagnosed but after following a histamine free diet for 2 weeks now I already feel a big difference: concentration and fitness has improved dramatically. Therefore I also believe that histamine can cause (for people sensitive to it) concentration problems or ADHD like symptoms (I don’t claim that this works for everybody with ADHD but there might be a small group of people with related problems for which this is relevant.)

    good luck to people trying to get well. Just dig in, fight and work for it until you know how to feel and function ok.

    • histamine intolerance February 26, 2013 at 12:24 pm #

      I have been with Christine myself, and unfortunately she made my situation a lot worse. She believed I was fructose intolerant, and had me eating corn and rice all the way. Unfortunately I have a gliadin sensitivity, which is also found in rice and corn. She’s a wonderfull lady, but I did lack tests with her. I did one gene test after that and it immediately revealed my gliadin sensitivity.

      And ooooooh yeah do I know about the ADHD ;) will be blogging about that more!

  26. Graham Kerr September 4, 2012 at 10:12 pm #

    I live in Australia and have found a great testing service have a look at http://www.imupro.com.au they send your blood sample to a lab in Germany and you get a VERY detalied booklet with your results and recommendations about diets
    Hope this helps someone else out there
    Regards
    Graham Kerr

  27. Barry January 10, 2013 at 3:41 pm #

    Thank you for posting this. I have been to 17 doctors during the last 12 years trying to just identify what is causing all of my problems. I think this may be it.

    You are correct: just one wish!

  28. Tracy March 25, 2013 at 12:54 pm #

    Hi Guy’s. My name is Tracy, I study Naturopathy. I have had this illness for the last 8 year’s. I’m self diagnosed. I live in australia, the medical system here don’t know as much as some oversea’s. I have had that many test’s and blood test it isn’t funny.. everything i am tested for is negative. I’m very healthy apparently apart from electrical problem’s this is what i was told, i refused there medications as i wouldn’t have been able to use mineral’s importand for the body. I haven’t got any cure’s for histamine intolarance, but i do know that it depletes magnesium and vitamin c from the body. i tend to have a lot of suplement’s in these two, i have magnesium citrate at least 4 tsp’s a day, magnesium chloride, as needed, full body with flare up. and calcium ascorbate at least 4 tsp’s a day, hourly with flare up, make sure you do research on the products you are using to make sure they are gmo free and the purest you can get. i also am a big fan of blackmores p.p.m.p. i take at least four a day and hourly on a flare up. A flare up to me is to long to explain, before i started that above method’s i almost had to close my business, i could barley walk at night, way to much pain to deal with. my heart was getting very scary, my lung’s were burning pretty bad as well.. the list goes on as most of you know. i am pain free most of the time now and i can cheat with food’s that flare me up now and again. anyway i am just in the hope i can help some people out there. best of luck. Tracy

    • histamine intolerance April 18, 2013 at 6:04 pm #

      good for you!!!! I hope your path continues upwards! Me and supplements still are on the iffy side, and finding truly grainfree ones are tough!!! (many many thanks to Micki Rose from Purehealthclinic for that! She’s a lifesaver!!!!)

  29. Shannon March 31, 2013 at 1:38 pm #

    Hello. I’ve been experiencing a number of symptoms for the past few years, and some of them for my whole life. I took a food sensitivity test which helped a lot, but the symptoms would reoccur randomly about once every month or so. I’m so glad I found this blog, because I’m almost positive histamine is the problem! I’m going to try a histamine free diet, however I’m a college student and my options can me limiting at times. I am pretty creative when it comes to cooking, but some breakfast and lunch ideas would be great!

  30. Sharon April 1, 2013 at 12:40 am #

    I am searching for answers. I am dealing with peanut allergy, histamine intolerance that makes my throat and tongue swell with foods, fruits. Exhausted with this whole thing!!! Rapid City SD

  31. iphone行動電源 June 21, 2013 at 2:03 pm #

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  32. Suzanne August 20, 2013 at 3:24 am #

    Please help. Every night I awaken every 3 hours because the bottom of my feet feel like they are on fire. I think I am HI because I can hardly eat any foods without have a reaction. But please, I cannot find anyone who has heard of this symptom. Has anyone else had this or known anyone with HI that has had it ? Thank you,

    • histamine intolerance September 18, 2013 at 11:38 am #

      I’ve never heard of it to be honest. Perhaps scout about on some histamine intolerance fora and see what others say?

  33. sharon March 7, 2014 at 2:52 am #

    I do not have anyone to diagnose me. They just don’t get it here. Mine has issues with my tongue and throat swelling with most foods, but I can have different symptoms. I cry because I am scared.

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