This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Wednesday, March 17, 2010

An Overview of High Histamine (also called Histadelia)

The condition of having excess histamine in the body is called Histadelia. This is apparently relatively common in people on the spectrum and their families. There are a lot of health issues associated with having too much histamine in the body and bloodstream (aside from the obvious issue of allergies), including asthma, migraines and other headaches, anxiety, fearfulness, phobias, panic attacks, bipolar disorder, OCD and tics, cardiovascular symptoms including fluttering heartbeat, dizziness and vertigo, Meneire's Disease, increased sensitivity to pain, abdominal cramping, diarrhea and Irritable Bowel Syndrome, and rosacea. The biochemistry of histamine is the biochemistry of alcoholism and substance abuse as well as other impulsive or compulsive behaviors (possibly including eating disorders). My older son looks intensely ADHD when he is “histamine-y”.

Prolonged exposure to elevated levels of histamine in the body is associated with damage to nerve cells and the central nervous system. It is known to be a cause in MS and suspected to play a role in other neurological disorders including Parkinson's Disease and Chronic Fatigue Immune Deficiency Syndrome. One role of histamine in the body is to regulate the "volume" of sensory input and processing so it is one cause of Sensory Processing Disorder. It also causes the blood brain barrier to become permeable, which could be one reason why high histamine people seem to be more susceptible to injury from toxins in the environment (such as mercury). I've also noticed, while researching the viral issue that we have, that people with viruses in the brain tend to have intense high histamine symptoms and I wonder if high histamine levels is what predisposes some people to have neurological complications from viruses that are relatively benign for most people (by allowing those viruses into the brain).

There seem to be a number of reasons why a person may have high histamine levels. Some bad bacteria in the gut produce histamine and good bacteria neutralize it, so an imbalance of gut flora could be a major factor. The process of methylation is one significant way that the body clears excess histamine out of the bloodstream, so people who under-methylate (or whose methylation systems are clogged with environmental toxins and yeast metabolites) seem to have histamine “back up” in the system. Adrenaline is another major tool the body has for lowering histamine levels (that’s what an epi-pen is) and adrenal fatigue also seems to be a factor. There are several enzymes that help people regulate histamine levels so a deficiency of these enzymes is suspected to be one cause (the two I know of are amylase and diamine oxidase).

Mercury has been shown to damage mast cells and make them more unstable and likely to release histamine. Mercury is also known to cause what’s called Th2 shifting, which is a state of the immune system that leads to auto-immune conditions and chronic inflammation (histamine). People with yeast overgrowth tend to have high histamine symptoms and I’ve heard the theory that some people may be allergic to the yeast in their own body. Ongoing exposure to allergens seems to be another likely possibility. High levels of histamine is a trait that seems to strongly run in families, which has led some researchers to conclude that it must be caused by a genetic variation that causes under-methylation, however gut flora is also passed along in families, as are epigenetic changes.

There are a number of things that can be done to lower histamine levels. There is a supplement regimen, which consists mostly of vitamin C and calcium (calcium pulls histamine out of the tissues and into the bloodstream, and vitamin C helps flush it out of the blood and into the urine). There are also supplements that support methylation that can help, such as SAM-e, methyl-B12, and TMG or DMG. Magnesium can help by stabilizing mast cells. Adrenal support is often helpful. You can try to minimize exposure to allergens. Some people get relief with anti-histamine medication, but responding atypically to medications is a common trait of high histamine people, so this option doesn’t help a lot of people. Histamine is actually a component of many foods so you can minimize dietary exposure (the low histamine diet). The low histamine diet won’t heal gut flora imbalance though, so other diet changes may be needed to address this, as well as probiotics. There are also several enzyme supplements on the market including Histame and Allerase.

38 comments:

  1. Wow, I remember coming across this awhile ago but never had a chance to really look into it. So I really appreciate the work you've done on this. My son and I have made huge leaps on the SCD but still some slight issues to fine tune, not to mention the list of symptoms you mentioned runs is in my mom and brother as well. I'm sure our bacterial imbalances played a role and our natural inablility to deal with yeasts (ASCA's). Something tells me I need to check into this more. Is there an easy test for this? Thanks for all of the great work and info here!!!

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    1. Thanks for you help... I read your post the other day and then oddly enough when i was at Wholefoods I seen the Enzymedica product Allerase. It has help me so much... Thanks!

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  2. You can have your blood histamine level checked. And yes, high histamine tends to strongly run in families, so it would not be surprising if you have family who also have the traits. If you find anything interesting while looking into it, please let me know! BTW- I'll be posting more on this subject soon too. What I have on here is just the tiniest tip of the iceberg.

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  3. Thanks for posting this. I have recently discovered this information for my daughter who has autism. I am also high histamine.

    I wanted to add that a higher dose of B6 helps the body produce Diamine Oxidase. Since adding B6 and Calcium, my daughter's progress has been amazing.

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    1. Mast cells produce Histamine. You need to get information about mastocytosis. Its a complex disease and very few doctors know of it. There is systemic, indolant & unipicara or something like that. You need a bone marrow, tryptase test. I'm rattling on. Go on line and read about mastocytosis. There are alot of different forms of the disease. Best way to check elevated histamine levels is by a 24 hour urine test. I also reccomend a tryptase test & buy a BIG bottle of Benadryl!!

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  4. Hi! Thank you so much for this information. I just discovered this disorder and believe my son and husband are definitely both histadelic. Can you speak to the information about avoiding folic acid and b12. My son is autistic and I have always thought these were two supplements essential for him. Thank you again!!!!

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  5. Thank you for providing this information. Recently, me and my 3 children had strep and started a round of antibiotics. 2 days ago (day 8 on antibiotics) 3 of us developed a rash on our legs and torso. I had no idea what would be causing this, but, when I read your information I realized that the high levels of yeast due to the antibiotics could be the culprit. Thanks again.

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  6. Hello, I have just starting reading abut high histamine levels as both my husband and son (diagnosed adhd) display some of the "symptoms". I came across it accidently when I was researching my son's consistently high lymphocyte levels. I would like to say thankyou for putting together your own research in such a lucid manner. I really look forward to hearing more Thankyou.

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  7. Hi I know this post is old, but I'm trying to gather some information about mast cell disorders and if mercury can be involved somehow. (Google brought me to your blog with my search)

    In your post you said,
    "Mercury has been shown to damage mast cells and make them more unstable and likely to release histamine."

    Do you have any specific studies that show this? Thank you so much! I have POTS and I think maybe mercury toxicity is the underlying issue for me too. :)

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    1. What was the reply about Mercury and mast cell? I also have mast cell and am looking for a way to work with it.

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  8. There has been a lot of work done in this area- I'll try to go find some of the research for you. In fact, I think one of the main researchers did a presentation at the AutismOne conference this year about it. If I can find that I'll post a link to it.

    So you have POTS, do you have ME/CFS too? Have you explored the adrenal connection?

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  9. Yeah it is definitely NOT adrenal for me. I've been down that road for a while and got myself stuck on hydrcortisone. So I can definitely have say I've been there and done that. :) I do not have the debilitating fatigue, so I don't consider myself as having CFS.

    Thanks so much for taking your time out to find a link. I really appreciate it and it may help to show others that some people with a mast cell activation disorder (which docs say can cause POTS) may be mercury or just heavy metal toxicity in general. :)

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  10. Just for consideration. I would consider the histamine/copper link too. Excess copper can lower histamine. However, high copper levels, or really low copper levels can contribute to the rise in psych symptoms in children and adults. Just a supportive though to contribute.

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  11. Sorry to bother you again, but I take it you were unable to find those links?

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  12. Sorry for the delay. The person who seems to be doing much of this research is Theoharis Theoharides, MD, PhD, a professor and director of a laboratory at Tufts University. Here is one paper of his:

    http://www.wickedlocal.com/brookline/news/x160320501/Brookline-doctor-seeks-autism-breakthrough#axzz1VYRygp27

    Another study:
    http://intimm.oxfordjournals.org/content/13/3/297.abstract

    This link has a series of interviews with Dr Theoharides that may shed ight on this: http://autismmedia.org/media3.html

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  13. Sorry wrong link for the first study, here it is:
    http://www.ncbi.nlm.nih.gov/pubmed/20222982

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  14. thanks so much for your great blog! Fab info. I've just got test results showing histadelia, plus pyrolia (with v v low zinc and v v high copper levels). Hoping vitamin therapy (starting with addressing the pyrolia first, plus some hormone probs - v low progesterone) might help with 20 yrs of CFS/sensitivities/candida/ibs/etc. I've been trying GAPs but was having reactions to the cultured veg, so your posts have been very helpful re that. Altho strangely I can tolerate kefir very well. Anyway, just wanted to say thanks for all yr work in sharing this. warm wishes, Beth

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    1. Beth, I have been reading the blogs regarding histamine levels..you mentioned low zinc and high copper.
      we have a daughter who is 38 with multi diagnosis of bipolar, autism and mental retardation. We go to Mensah Medical in Warrenville, IL. Previous place was Pfeiffer Treatment Center where they Pyrolia. She was prescribed a custom compound for her problems of low zinc and high copper. Due to the high pollen count this year we are dealing with high histamine. Has anyone taken quercetin for high histamine?

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  15. Thank you for getting back to me with the links. These are perfect!

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  16. There are three different categories of ADHD symptoms: inattention, hyperactivity, impulsivity.

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  17. Thanks for your research, I'm getting tested for histamine levels Thursday. Honestly, I hope I have this, because I've been on a search for more than 2 years.

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  18. I have been tested and have high histamine...my doctor recommended Buspar which seems to help. But it seems like a bandaid. Your blog was very helpful. Is there a specialist that helps with this type of issue?

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  19. From what I can tell, the closest thing to a specialist for this would be an orthomolecular doctor, but those are hard to find. At least they seem most likely to have heard of it. I think it is essentially unknown in mainstream medicine, let alone how to work with it. Some doctors who practice functional medicine are aware of it. The Pfeiffer Center would be the closest thing to experts I guess, but I'm not sure they get all the implications, such as the role of bacterial infection of MAO enzymes in the mitochondria. Personally, I think you are best off doing your own research.

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  20. High Histamine also causes low blood pressure alot of times, since histamine is a vasodilator.

    Another high histamine trait is getting heart palpitations and tremors after working out. The thing that helps me the most, is eating lots of veggies & fruits. Supplementing with Spirulina and on workout days, an adrenaline stimulator such as Yohimbine.


    Shilajit + Spirulina + 5-HTP is also a VERY helpful combination.

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  21. I've read conflicting information on B12 and Folic acid supplementation. I've suffered from depression since age 19 combined or triggered by obssessive thinking which used to go away on its own. I do remember having my symptoms return during the Spring and dissipate in the Fall. Since age 33 I have taken a myriad of medications creating a whole set of different problems. I had a complete blood up and my hemoglobin and B12 and folic acid were on the low side and inflammation was pretty high. I'm currently taking Cerofolin (B12, B6 and NAC) which is available by prescription only but I'm afraid of my obssesive thought coming back again (no OCD however). I also have Fibromyalgia and CFS.Can any one weigh on this? BTW, I believe I was exposed to mercury in sixth grade. My Science teacher had jar containing a shiny silver gel like substance and some students including me dipped our silver necklace charms in it as they would turn super shiny. (this was over 35 years ago).

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  22. Hello!
    Thank you so much for this blog! I find myself here repeatedly for various things.
    My daughter has eczema and I suspect high histamine as well. We are a GAPS family and are loving the results so far. I have a question about how to get my daughter tested for histamines, are you in the US? If so, did you test for histamines or DAO activity? If so, which lab did you use?
    Thank you so much for you help!
    All the best
    Christine

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  23. We had testing done quite a while ago, all I remember was that it was a blood test for histamine. I do think there are several tests that could help diagnose this problem. This really isn't something I've looked into, if you do please post info here. Thanks!

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  24. The MTHFR gene polymorphism has been linked to both autism, high histamine, and many other conditions. When histmamine is high it is also helpful to take methylfolate along with methylcobalamin and avoid folic acid at all costs. This site explains how to treat histadelia if you have MTHFR (most kids with autism do).

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  25. Great blog. The human body is really amazing and I think we still have a lot to learn about ourselves.

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  26. My experience may be of help to some. I was 50+ when symptoms started happening that I chalked up to stress and menopause. I slept poorly and had for years, had heart palpitations that did seem tied to exercise and food, suffered severe flushes, muscle cramps in the neck and shoulders, and diarrhea sometimes after eating. Then I got eczema around my neck and one eye. One Easter I ate pretty much anything I wanted to at a buffet and had a Bloody Mary to boot. About an hour later my heart went nuts and I barely made it home to the bathroom. I went online to see what food reactions could cause those symptoms and discovered an excellent article called "Histamine Intolerance" in the "American Journal of Clinical Nutrition". I was amazed as I read that all the symptoms I just mentioned could be from the same underlying cause, histamine intolerance, and dismayed to find that a low-histamine diet was the only solution. Long and short, I tripped on Histame, a supplements that provides diamine oxidase. As long as I take it anytime I'm ingesting histamines, all my symptoms are gone. Oh--and I was surprised and tickled when, after a month or so of starting Histame, I started sleeping like a baby. Turns out scientists are finding that the hypothalmus uses histamines as a neurotransmitter to be awake! That's my story. Hope it helps someone.

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    1. I too started having symptoms when menopause started. I am just finding out about Histamine Intolerance. I have started a low hist. diet and it is helping. thanks for your post.

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  27. High Histamine Is often a symptom of Low Levels of Magnesium. I found your post very interesting, Seminal even. After about a week of taking a high dose of Magnesium alot of the symptoms have subsided. Though without testing there is no way to know this was the problem or exclusively the problem, alot of what you listed rang true with me. Additionally after long periods of time of nutritional deficiency other problems are likely to surface so It may very be the case that I am still dealing with these

    This link is a study to rats and though they are not always analogous, I think it might help you
    http://www.ncbi.nlm.nih.gov/pubmed/3111814

    With Regards to dose you could consult this (I took a 600mg chelate dose divided by four) - it is safe. Absorption of minerals is always tricky
    http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

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  28. I have no experience with autism but am 58 years old and symptoms of histadelia have made my life miserable. I spent several years thinking it was mold allergy before realizing that it has to be due to lack of enzymes that clear histamine. All of the high histamine foods cause every symptom. I could always eat anything until stomach problems 6 years ago. A child was believed to have caught giardia at school and spread it to me. I was also diagnosed with c difficile toxin at the same time. Now there is permanent lactose intolerance and reactions after eating the histamine foods. I will be going on the diet and had no idea it could cause nervous system damage. Thankyou!

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    1. I'm sorry to hear this has happened to you. Histamine intolerance is often about much more than insufficient enzymes, and with the details that you've shared here I think you would benefit from doing the diet but also looking into healing the gut more. C. diff can produce histamine, and having too much in your system can create the issue with foods because your body's ability to handle histamine is already being maxed out. Lactose intolerance is a sign of gut damage and can sometimes be reversed by healing the gut.

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    2. Histamine production as well as a host of other inflammatory cytokines is typical for us as humans as well as virtually every other animal/mammal in response primarily to interaction with chronic infections, foods, drugs, and various chemical compounds. Most people will drive themselves crazy chasing their histadelic symptoms down and even though supplementation is effective, any underlying susceptibility is not attended too unless epigenetic changes are necessitated by addressing the deficiency. No doubt you have been for some time full of infections as are most of us. The issue is your specific susceptibility to these infections and not the organisms themselves, although their presence obviously has pushed your tolerance to the limit. Almost all of this is liver/immunological related and can be corrected with greater efficacy through homeopathics specific to the actual infection and not the just the symptoms. Look for someone in your area, although difficult who practices Sequential Homeopathy and also can demonstrate an excellent working knowledge of supplementation and dietary adjuncts in order to go after this. Inflammation is primarily why we suffer with most of our long term and even short term-acute- based symptoms.

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    3. I agree about there being underlying causes of high histamine levels, one thing that I discuss a lot on this blog is what those underlying causes are and how to heal them. Yes the liver and immune system are involved, but they are not the "root cause" but instead they themselves are signs of deeper causes. Mito dysfunction (as the result of toxic exposure and chronic pathogens for example) is one such cause, as is under-methylation, which itself can have a number of causes. I do not personally advocate just addressing symptoms with supplementation, but instead identifying and healing from underlying cause.

      While I do know some people who have had good results with homeopathy (although sometimes short-lived), most people I know (including myself) only get positive results with homeopathy when used to address symptoms such as taking Histaminem during an acute episode of elevated histamine. Most people who I know who have tried homeopathy for bigger issues have not had much success. I know some people have, but it just does not seem like a reliable road to go down for many people, especially considering the cost.

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  29. WATER
    water is the best natural antihistamine. For many years I suffered from sinus headaches and upper respiratory irritations, similar to allergy reactions. I began drinking 3 liters of water per day. Within 1 week my symptoms subsided. I am not familiar with the role of histamine in these serious systemic diseases/syndromes. Perhaps someone can experiment with the use of water and post their findings.
    A formula to start with is 1 liter of water per 25 kg body weight per day, spread throughout the day.

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  30. Thanks for the blog! Great info and also comforting to see other people struggling with similar problems.

    I have had problems with anxiety since about 16 years old (hard to remember before then) when I developed anorexia. Since then I have suffered a host of symptoms such as headaches, feeling wired, anxiety, insomnia, burning feet, throbbing, severe stinging eyes. I found out I have super high cortisol, high histamine and candida (just waiting on gut analysis results to confirm but I get candida breakouts on my skin, white tongue, constipation). Funnily enough though in pregnancy all my symptoms disappeared.. I just dont know where to go with treatment.. is it histamine? or adreanals? or candida?? I've cut out gluten, dairy, sugar and white carbs.. feeling better but not 100%. Any Advice?

    Thanks

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