Histamine Intolerance And Mast Cell Activation Disorder | Chris Kresser

Could Your Histamine Intolerance Really Be Mast Cell Activation Disorder?

by Chris Kresser

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Histamine intolerance
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Do you have trouble with histamine? Have you struggled to get a diagnosis? In Mast Cell Activation Disorder (MCAD), part of the innate immune system becomes hyperactive, releasing histamine and other chemicals that affect every organ system in the body. Read on to learn more about MCAD, and how you can address the root cause.

Histamine intolerance has become a popular term in the natural health community.  Characterized by symptoms that appear to worsen with the intake of foods that are high in histamine or that stimulate the release of histamine, histamine intolerance is not really a diagnosis as much as it is a description of symptoms.

Most clinicians, including myself, now believe that Mast Cell Activation Disorder is a more accurate description of what patients with so-called “histamine intolerance” are suffering from. There are a number of factors that can contribute to, or cause, histamine intolerance, including excess histamine production, diamine oxidase (DAO) enzyme deficiency, HMNT mutation, and poor methylation in the liver; however, my experience has been that MCAD is responsible for a large number of cases of histamine intolerance. This article will serve as an introduction to MCAD – what it is, what causes it, and how to treat it.

Mast cells: sentinels of the immune system

Mast cells are white blood cells found in all human tissues, especially at places where the body interfaces with the environment, like the gut and skin. Though best known for their role in allergies, mast cells are also involved in the formation of new blood cells, wound healing, the development of immune tolerance, defense against pathogens, and the maintenance of blood-brain barrier function (1, 2).

Mast cells are the sentinels of the innate immune system, on the lookout for environmental changes or insults to the body. They respond by releasing mediator molecules that influence the behavior of other cells and tissues in an effort to maintain normalcy, or “homeostasis.” There are over 200 of these mediators stored within the granules of mast cells, including tryptase, prostaglandins, leukotrienes, and histamine (3).

Histamine often gets a particularly bad rap, but it has many important physiological functions in the body: acting as a neurotransmitter, regulating stomach acid secretion, and playing a role in the local and systemic immune response (4). The key takeaway here is that we need mast cells and their mediators for normal body function. The issue arises when these cells become overactive, as they do in individuals with MCAD.

Mast cell activation disorder: the hidden diagnosis

Mast cell activation disorder is characterized by the accumulation of mast cells that are genetically altered (mastocytosis) and/or the abnormal release of mast cell mediators (Mast Cell Activation Syndrome). Because mast cells are found in all human tissues, and mast cell mediator receptors are found on almost every cell in the body, MCAD has the potential to affect every organ system (5).

MCAD presents clinically as a chronic, multisystem pathology of a generally allergic and inflammatory theme, and has been associated with obesity, diabetes, skin conditions, irritable bowel syndrome (IBS), depression, and more (6). MCAD does have a genetic component, and tends to cluster in families (10), though related individuals may present with very different symptoms (11).

Trouble with histamines? Get to the root of the problem.

MCAD is estimated to be more prevalent (7) than other diseases of mast cell dysfunction, but also more difficult to recognize. This is at least in part due to the fact that it often does not cause abnormalities in routine lab testing. MCAD was not named as a condition until 2007 (8) and diagnostic criteria weren’t proposed until 2010 (9).

Finding the root cause of MCAD

In the functional medicine model, we always seek to address the root cause of disease, as opposed to just treating symptoms. We still have a lot to learn about MCAD, but I believe it is likely the result of deeper pathologies, including:

Heavy metal toxicity: Heavy metals like aluminum and mercury have been shown to destabilize mast cells. This makes sense, as the very purpose of using these as vaccine adjuvants is to elicit a heightened inflammatory immune response. Lead, cadmium, and bismuth have also been found to activate mast cells and cause mast cell mediator release (12).

Infections or gut dysbiosis: The gut is home to 70% of the immune system (13), including a large number of mast cells. Parasitic infections, bacterial/viral infections, or bacterial/fungal overgrowth activate mast cells (14). Helminth parasites and Candida have been shown to be potent stimulators of mast cell activation (15, 16). Mast cells regularly interact with microbes, and gut dysbiosis itself may lead to MCAD (17).

CIRS: Chronic Inflammatory Response Syndrome could also play a role. Those who are particularly susceptible to mold and have a reduced ability to clear mycotoxins from the body, which leads to a constant activation of mast cells.

Treatment for MCAD

Conventional treatments for MCAD are pharmacological agents that block the action of mast cell mediators. While these may provide much-needed relief to patients, they are not a long-term solution and can have unwanted side effects. Safer short-term action steps that you can take to provide some relief include:

  • Adopting a low-histamine diet: For some people with MCAD, a low-histamine diet provides significant relief. Supplemental diamine oxidase can also help by increasing histamine breakdown.  But, it’s important to keep in mind that this is only reducing exogenous (outside) histamine, and not altering the amount produced by your mast cells endogenously (within the body). Histamine is also only one of many mediators produced during mast cell degranulation.
  • Focus on nutrients and foods known to stabilize mast cells: Many nutrients, including selenium (18) and vitamin C (19), have been shown to stabilize mast cells. A number of herbs and spices, like holy basil (20), peppermint (21), ginger (22), thyme (23), and turmeric (24) also have this effect. I have also seen good results with supplemental forms of quercetin (25), bromelain, nigella sativa (26), nettle (27), and butterbur (28).
  • Reducing stress: Corticotropin hormone, released in response to physical or psychological stress, destabilizes mast cells and causes them to release their mediators (26).
  • Entraining circadian rhythms: Mast cell activity closely mirrors circadian rhythms (27), so getting enough sleep and avoiding blue light at night is crucial.

Ultimately though, we need to address the root cause:

  • Remove heavy metals from your system: Chelating agents can help to remove heavy metals from your system. This is best done under the guidance of a healthcare practitioner. Removal of old mercury fillings by a trained professional can also reduce the burden of heavy metals in the body.
  • Treat infections: A comprehensive stool test can help identify parasites and other infections that could be contributing to mast cell activation.
  • Heal your gut: Remove inflammatory foods and focus on nutrient density. Include plenty of probiotic, prebiotic, and healing foods in your diet.

Now I’d like to hear from you.  Do you experience symptoms of histamine intolerance? Had you ever heard of Mast Cell Activation Disorder? Let us know in the comments!

341 Comments

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  1. I have recently been dignosed with Mast Cell Activation Syndrome by my immunologist in New York City. All tests revealead that my major problem is histamine. I had sky-high levels of it in the 24 hour urine test as well as high levels that fluctuated in three separrate blood plasma tests. Tryptase and interleukins were only borderline high.

    Comolyn sodium did not work for me and I refused to take the slew of antihistimines he prescribed (like 12 pills per day!) My doctor’s next suggestion is to try the monthly Zolair injection. This worries me and I’m not even sure it will address my main problems which are fatigue and brain fog along with the long list of other symptoms I have (I am disablility because I am so sick).

    I follow a low histamine diet but it makes no differnce in the quality of my life–I am often housebound and even couch/bed-ridden. All physical exertion lands me in bed for three days.

    I’ve been unable to work for four years and it has ruined me financially. What can I do to tackle this wretched illness and regain some quailty of life?

    Feeling quite desperate…

    • Lisa – I also have Mast cell issue and 2 immunologists recommended Zolair. I have joined a number of facebook groups regarding this condition. Many have excellent results, a few do not. My concern is that some have indicated they feel their joints more and a few seem to have some hair loss.
      I was taking a daily pill of XZAL but in addition to hives I get Angioedema on my face about twice a month (swelling of lips and other places on my face) So my friend recommended using Singulair which I just started one a day. I also hate taking these antihistamines and am trying to find a natural approach like you, low histamine, all organic, cut out gluten and sugar. Such a wretched illness as you say.
      BTW who is your NYC doctor?

      • Hair loss? That’s cinches it. No Zolair. I already have that from the MCAS and thyroid.

        My Dr. is Arye Rubenstein out of Einstein Medical College/Montefiore Medical Center. He’s pretty typical in his lack of education and dependence upon pharmaceuticals approach to things. My big takeaway was finally getting the right diagnosis because he knew which tests to run. He did say that I must stick with the low-hist diet, which I detest.

        As far as the diet, I’ve been gluten, dairy, sugar and additive free for a few years now. And add to the the low-hist restrictions and we have ourselves one very boring diet. I even make my own almond milk (which I drink sparingly) because the gums and natural flavors which are added to commercial brands can stimulate degranulation.

        Is the Singulair helping you? My main symotms are fatigue, fog, flushing, facial hives, very minor angio on my lips, itchy bumps, nasal congestion, plus the rest of the long list.

        • I meant to say “He’s pretty typical in his lack of educating patients and dependence upon pharmaceuticals approach to things.”

          Plus my diet is 95% organic.

  2. I just wanted to let people know that after reading this article, I suspected that I have MCAD as I’ve had episodes of anaphylaxis and recently I began reacting to almost everything I ate. My weight started dropping dramatically because I was too scared to eat because of the pain. In desperation I ordered a supplement called PEA (Palmitoylethanolamide) which stabilizes mast cells and glial cells. I can’t tell you how much pain this supplement stopped but because its such a powerful anti-inflammatory too, it has taken all the inflammation in my gut down. I added Vitamin C and bioavailable B complex and the improvement has been incredible. I also restarted Chlorophyll which is providing Copper. I’m barely reacting to anything now and eating so much more than I could before. My metabolism has increased, my motility is perfect, and my digestion is working like it hasn’t in years, possibly due to a lack of inflammation. I can’t say enough good about using PEA, its an amazing supplement.

  3. I am going to see a CIRS specialist. I really didn’t want to go there, because the remediation sounds just daunting (and I don’t have the energy to face that or moving). However, I can’t ignore any more how much my symptoms line up with other water-damaged building sufferers. Has anyone experience with the Shoemaker protocol?

    • I totally can relate..however after 12 years of research I think MCAS might be the root of my multi system disorder. For me I live in mold as well and cannot move. What I am going to do is work on sleep hygiene , getting natural sunlight on my skin , and avoiding histamine foods, work on vagal nerve tone and when budget allows get: selenium [brazil nuts with seaweed boosts my energy] and liposomal vitamin C [and pantothine which really helps me). I like the idea of thyme , and turmeric definitely helps me. Maybe quercetin , bromelain, nigella sativa , nettle , and butterbur . For moral support there are quite a few good FB groups out there for MCAS or CIRS etc…Sending all the best to you, yours and all.

      • in another article Chris elaborates ” Lactobacillus plantarum and Bifidobacterium infantis are two histamine degraders. It’s quite difficult though to get Bifidobacterium infantis separately as an individual strain, without other strains that are also in it. But it is possible to get Lactobacillus plantarum that way, just as a single strain, pretty easily…[and maybe try] organisms like Prescript-Assist…”https://chriskresser.com/what-you-should-know-about-histamine-intolerance/

  4. Yes histamine causing me grief… increasingly so as yrs. Pass ! No …hadnt heard of MACD!
    & sure makes sense !

  5. I haven’t been diagnosed but 100% sure I have SIBO and MCAD. I have Fibromyalgia, Hashimotos, and extreme EHS (electrohypersensitivity) that sometimes puts me into complete paralysis. I have like an allergic reaction to wireless frequencies. I’ve been on Phenergan every night for the past 18 years because of food intolerances and had 4 anaphylactic reactions to Novocain at the Dentist. While researching I came across a supplement called PEA (Palmitoylethanolamide) which we make in the body in small doses. This supplement downregulates Glial and Mast cells and equalizes them. I’ve ordered some and hope to start within the next 2 weeks. The product is known as a pain supplement but has some incredible health benefits for almost every disease.

  6. Hi, I am reacting to pretty much everything that is on the SIGHI-list of food for histamine and mastcell activation.

    I get swollen lips, cheeks and eyelids. My nose, eyes, ears and scalp are itching and my eyes are also watery. I also feel a bit down mood wise. And I get extremely tired and just want to sleep.

    I would like to know if Lactobacillus Plantarum is a histamine-producer – as you say in RHR episode sent on Feb 13 2013 OR if it is a histamine-degrader as you state in a post from Nov 28 2014.

    Any ideas of how to relieve this? Is it possible to get better and tolerate eating at least fresh meat?

    Please, should I add Plantarum or stay away from it?

    • I can’t remember with Dr. Jill said about probiotics that produce histamines…they are there being all ferments are histamine culprits…the one she said HELP are lacto rhamnosus and bifidobacter spp.

  7. My daughter is 7 years old. I am trying everything to get her help and figure out what’s going on with her. She is having a bunch of random allergic reactions to seemingly random things. Two years ago we did an elimination diet and found out she was severely allergic to food dyes. We had mold removed from our home, she was bit on the head by a deer tick, and she also had a very bad reaction to vaccines. I don’t know where to start looking for the underlying cause!! I’ve been asking her doc to do tests and he has not. We have an appointment with an allergist in May, however I’m so worried about the reactions she’s having and don’t know what to do in the meantime. Please help!

  8. I tested IgG positive for C. Pneumonia (persistent cough symptom). Now I have “infection triggered asthma” and my IgE for C. Pneumoniae (Cpn) is up! ***Problem…C. Pneumoniae can invade mast cells!*** It prefers to exist in M2 macrophages which release MMP12 = elastase. Not good – down goes elastin. Elastase can cause…get this…emphysema and other problems in other organs. Most of us have been exposed to Cpn…like EBV…hangs around, but suppressed.
    I’m on I3C, genistein, Leutolin, Lycopene, Pycnogenol, Magtein (thanks, MIT!), Brain Gain w/berberine HCL et al (Cpn can cause AD as can other pathogens), ultimate Omega (3), Black seed (Cpn can cause Cancer). I’m going to try another approach also (targeting my blood type lectins) that may be impacting my own immune system to clear the infection. Several abxs. did not work. It can become a chronic infection. I3C helping peanut allergies is interesting! Any suggestions welcome!

  9. I think you should do a doctor Data Test to see what toxins you have in your body like heavy metals or sprays and chemicals and along with toxins come the Candida or have you taken a lot of antibiotics ?

  10. My GI stated that my symptoms sound like Mast Cell Activation Syndrome. I was referred to an Immunologist to treat my symptoms. They did a skin prick allergy test and I had no reaction to any of the 38 allergens. They ordered blood work which checked my histamine and tryptase, but the results were normal. They didn’t know how to further help me and recommended a Rheumatologist; this is the 3rd doctor to make this recommendation. Could I have MCAS even if my histamine and tryptase was not elevated? I fit the vast symptoms of the disorder. I was diagnosed with gastritis, esophagitis and GERD in April. I was diagnosed with SIBO in September, I believe PPI use caused this. My blood work in August indicated an ANA positive result, high red blood cell count, high lymphocyte and monocyte, and low granulocyte. The blood work also found Epstein Barr Virus. I see a Rheumatologist soon and I’m hoping for more answers. However, I strongly feel that I could have MCAS but don’t know if a local doctor can accurately diagnose me with this. I would also like to figure out if what appears to be MCAS is a separate issue from the SIBO, or a result of the bacterial overgrowth. I started having changes to my body in the beginning of 2016, well before chronic digestive problems began later that year.

    • You have to get rid of the SIBO for starters. Candex along with Now Serrizymes along with an extremely low (I have to do near zero) carb diet will break down the bacterial biofilm (google for more info). Other biofilm degraders are Interfase and Biofase. Then you can take Sovereign Silver, or another bacteria killer.

      Researchers have found evidence that SIBO can cause autoimmune disease.

      I have found that when reducing carb intake sodium intake has to increase, which explains why I crave more sodium. I just read an article on Dr. Mercola’s website which explains it.

      Medical doctors know very little about SIBO, and probably nothing about how to get rid of it. A doctor may give you an antibiotic, but the bacterial biofilm has to be broken down first in order for it to kill the bad bacteria.

      Following a low histamine diet helps tremendously, starting with intermittent fasting to get histamine levels down quickly.

    • Don’t know if you found the answers to your questions or not but yes you probably have MCAS. Elevated tryptase is a marker for Mastocytosis not MCAS. I have elevated tryptase so I might have mono colonial mast cell disease (I think that’s what it’s called) or more likely Mastocytosis. I have to get a bone marrow biopsy soon to see, I’ve been putting it off for a few years now because it hurts and pain is a big trigger. I’m finally willing to take the plunge though because I’m on some good meds that have things decently controlled. I don’t have any Ige allergies either though that I know of and most of us don’t. I’ve dealt with SIBO too and getting rid of it didn’t make a massive difference with my symptoms because I still had mast cell disease regardless of whatever else came along with it. My disease was triggered by a few things. I have Hashimotos and I was taking Armour which is high in Amines, and I was exposed to mold. I wasn’t normal by any means before I got this. I’ve had weird health problems for a long time. I’ve come to the conclusion that every disease that I’ve gotten is the result of the underlying mast cell problem not that the mast cell problem is caused by a disease. Mastattack.org is a great resource for mast cell stuff as is healinghistamine.com and inspire.com. Mastattack and healing histamine deal specifically with mast cell related things and inspire.com is an online community for people with rare diseases like mastocytosis and MCAS (MCAS isn’t rare anymore unfortunately). As far as doctors go, my allergist is less knowledgeable and understanding than my regular dr. So I get all my meds from my regular dr. You don’t have to go to an allergist to get a diagnosis of MCAS a regular dr is just fine. I go to a concierge dr and he’s been a lifesaver. He gives me epinephrine even though I’m not in shock (to calm my bone pain down) and he gave me vials of epinephrine and the needles so I can inject myself without having to epi. Unlike my allergist he gets that my mast cells leak and just make me miserable and that I only need to epi if it’s an emergency. The meds I use are: Zantac, Zyrtec, Allegra, Klonopin (only on my period/ovulation, Benadryl (only when it’s super bad), Neuroprotek (daily), Quercetin, and Ashwaganda tea. Those meds in addition to an anti-inflammatory diet keep me out of Anaphylaxis which is great because I don’t want to die. If you’re going into Anaphylaxis make sure you have liquid Benadryl, Zantac (or another H2 if you react to Zantac), and try to get epi pens prescribed to you. The biggest risk from mast cell diseases is death from Anaphylaxis not the really annoying/painful symptoms. I have a medi alert bracelet too which I highly recommend. It just says mast cell disease on it and my biggest triggers which are sulfa drugs and sulfites. I also printed out the emergency tms websites protocol (the mastocytosis society) and I keep it in my purse in a ziplock bag with a note on it for emergency personnel. It’s notated on my bracelet to look in my purse. It’s a pain but doing stuff like that can help save your life. When you go to a hospital and are in a ton of pain or have an infection their first instinct is to give meds that will more than likely kill us (morphine for example). So if your unconscious it’s really helpful to have information about your health condition that’s easily accessible. Sorry for the book but I hope what I said was helpful. I got side tracked by your comment because I was looking for info on lysine and mast cells (googled it and came across this website).

      • It’s now a year later and my Functional Medicine doctors agree that I’m likely dealing with Mast Cell Activation Syndrome. I no longer have SIBO, and we have been addressing Gut Dysbiosis and Leaky Gut Syndrome. I have seen improvement in this area, yet MCAS is still an issue. We discussed the possibility of my gastrointestinal issues being secondary to this condition. I believe my chronic gastritis to be from excess histamine at this point. No official diagnosis of MCAS from lab work, though I believe this is an accurate diagnosis as well as my doctors. We are addressing gene mutations with methylation and detoxification. I recently started natural mast cell stablizers. I do not experience anaphylaxis which is why I was unsure at first about MCAS being an accurate diagnosis. I have experienced two memorable reactions which I believe were near anaphylaxis attacks: nausea, rapid pulse, overheating, muscle weakness and pre-syncope triggered by heat and sunlight. I do not have severe reactions requiring an epi pen; however, I do have a large variation of daily symptoms (multiple organ systems) with a number of triggers. I would assume that I’m not releasing as many mediators as someone who experiences anaphylaxis; however, my reactions can still be debilitating. We don’t 100% know the cause of this; I think a number of factors are involved.

        • Fixing my statement from above. I now recognize those two memorable reactions as vasovagal pre-syncope, not near anaphylaxis attacks. I have never experienced anaphylaxis, fortunately.

    • Test yourself for mold & mycotoxins. That’s what my family did. Order the test yourself. We have mold! Ughhh.
      MyLabsForLife.com

      Hang in there! We shouldn’t treat a piece of paper, we should treat people!

    • SIBO (small intestinal bacterial overgrowth) can cause MCAS, and whatever caused SIBO in the first place can cause MCAS. Gut dysbiosis, celiac disease, any intestinal issue, really, can cause both an inhibition of the production of DOA (diamine oxidase, the enzyme that breaks down histamine) and they can cause SIBO.

      Soon after my celiac diagnosis about 16 years ago, I read up on SIBO and found that an Italian study (they are huge in celiac and SIBO research), found that something like over 80% of people (IIRC) diagnosed with celiac disease met all the criteria for a SIBO diagnosis (including a positive result on the lactulose breath test).

      • Think this would true for someone with Gluten Intolerance as opposed to Celiac, Kathryn? I do, however, have a genetic marker for Celiac and a niece that has it.

  11. I recently wrote a post on this thread about the challenges I am having with histamine intolerance. In an effort to find a solution I worked with a natural path who put me on a host of supplements and herbal antibiotics for SIBO. In spite of taking about 20 supplements a day and avoiding all but about 5 foods, my symptoms worsened. The course of treatment seemed to make me worse by revving up my system. In a desperate attempt I contacted a Chinese herbalist for acupuncture. He prescribed an herbal concoction that though, tasting horrible, has calmed my system to the point where I am down to 0 or 1 antihistamine a day (down from 5). I was skeptical but willing to try anything for relief. My acupuncturist has studied Chinese herbs for years and really understands it. I write this as a suggestion for an alternative to those looking for an alternative to their current course of action. The acupuncture may or may not be helpin but as long as I take the prescribed herbs my intense itching (hands, feet, nose) subsides.

    • Thank you for posting your experience, Colleen. Would you share the herbs in your regime? Would love to find a practitioner and/or take this list to my kinesiologist.

    • Drs pussh No suppliments of al kinds are not likely knowledgable about MCAS as most supplements are rarely pure. They are not regulated or inspected for contents, fillers,
      Excipients, or strength of dosage. many brands of turmeric, or other herbals, and even vitamins were found to contain corn meal(GMO type). sawdust type fibers, and other crazy blends. Especially those with contempt s ladled ‘proprietary ‘
      Meaning non disclosure of contents, strength or ratio of ingrediants . Thus they can cause flares, imbalances and reaction in a majority of MC patients.

  12. I am just finding this thread and I am not sure if it is active or not.
    I was diagnosed with SIBO by a naturopath and have been attempting to get in under control. I eat super healthy (strict paleo, minimal alcohol, no sugar except fruit, organic, no fake sugar) and I have been having chronic itching only relieved by Allegra. Lately, however it has become less effective and I have begun to have “flare ups”. I also can’t seem to lose weight as hard as I try. I have read everything I can find, tried supplements and it seems to be worsening. I am treating the SIBO first in the hopes that the histamine tolerance will be corrected by getting SIBO taken care of. I am so frustrated though, seems to be getting worse and I don’t know where to turn or what to eat anymore. Any resources and / or recommendations would be appreciated.

    • The website yeastinfectionadvisor.com has helped me understand about the biofilms that bacteria build around themselves to stop any antibiotics from killing them.

      That is what I am currently working on is eroding the biofilm, and the Biofase is working, as long as I stay on a very restricted diet. Another biofilm degrader is Interfase, which I am going to add, just to get a broader eroding enzyme spectrum.

      Any carbohydrates that are eaten give the bacteria what it needs to keep building the biofilm so restriction is very important.

      What the yeastinfectionadvisor website is not clear on is when to start taking the herbal antibiotics. It should be one month after starting the biofilm eroding enzymes.

      I am very hopeful also, that once my SIBO is gone that I won’t have any more autoimmune symptoms.

  13. I was diagnosed with MCAD in 2012. My worst symptoms manifested after a 2007 mercury filling removal – without proper handling, I think – and overdoing it on brown rice products in 2011. I had a lot of symptoms after an unnecessary CT scan in 2010 and likely had leaky gut as well, as I was having abdominal distention. So I got off gluten, but that led me to arsenic laden brown rice products. I never touch brown rice now.

  14. Is it possible to start having these issues after finishing chemo for cancer (I specifically has 4 rounds of cytoxin and adriamyacin (sp?) for breast cancer in 2001). Can chemo do something to the mast cells to cause these issues? My symptoms are sneezing, congestion, migraine, and sometimes flu like feelings…but no high temp. My diets is very limited…mostly tolerated, low HIT veggies, apples, freshly cooked eggs, milk, rice/rice pasta…but no other processed rice products…like rice cakes. The only processed food I seem to tolerate is Nature Valley Oat/Honey Granola bars…don’t know why. Thank you.

  15. I have a primary immune deficiency. I also have Sjogrens and I had my thyroid removed a year and a half ago. The year before that I had major wrist surgery. Ever since the Thyroidectomy due to thyroid nodules, etc, I have been very sick with what seems to be mast cell. My doctor had suspected it for awhile. Since the TT, I have become totally disabled. I can’t even handle the very medications I need for my thyroid replacement. I can’t take T4. I break out in hives, eczema, everything. I am so sick. Totally disabled. I have thoughts of suicide due to this. I can’t imagine living like this. I am on T3 only. I can only take 60 mcg so I am hypothyroid. I am trying to get into a mast cell specialist, but honestly, I am so sick from all of the antihistamines and mast cell stabilizers. If anyone has any ideas, please be in touch. I am in a vicious cycle. I can’t take the very medications (thyroid meds) that could help stabilize my mast cell. Thyroid or lack thereof contributes to mast cell.

    • We’re you able to get help? What part of the country do you live in?

      It’s taken years for me, but slowly and surely I have found medications that work, supplements that work, and a routine that works. You absolutely need to find a good mast cell doctor though. Feel free to contact me and I will give you as much info as I can: lorenmark (at) gmail (dot) com

    • You asked for ideas…. I’d try the macrobiotic diet if I were you. Read as much as you can about it. It’s known to cure many ailments. Live on mostly whole grains- especially brown rice. Also cooked fresh vegetables & seaweeds. Try to avoid sugar and fruit- especially tomatoes. I hope you feel better soon. That sounds awful. Get plenty of sun & fresh air too. Force yourself to exercise. Do some dry brushing. These are all things I need to do too!

    • I had VERY same issue with my thyroid meds. I tried them all. Turns out one of my primary triggers for my mast cell is anything in the CANE family so mostly sugar and any cane sugar derivative and also coconut. Both cause anaphylactic symptoms to me. But I don’t have a true IgE allergy to them. It’s a trigger for my MCAD. Well once I figured this out I realized all thyroid pills have confectioners sugar (my trigger). Tirosint contakns glycerin which when I called the manufacturer they informed me that it was derived from coconut. So my doc had to prescribe a compound thyroid medicine which I take a t4/t3 combo. I have been able to successfully take it without incident for 2 solid months now. Yay. I would discuss compounded thyroid meds with your doc to remove any and all fillers. You have the option for compounded synthetic or natural porcine. My pharmacy Stokes in NJ will also ship if you don’t have a compound pharmacy near by. It is literally my life saver.

    • Many MC patients with hypo thyroid do better with a Med called Tirosent. Starting extremely low and titrating up.
      You sound like my daughter who had to have all MC meds compounded due to the excipients in brand names for h1h2and ketotefin.

    • SIBO (small intestinal bacterial overgrowth) can cause MCAS, and whatever caused SIBO in the first place can cause MCAS. Gut dysbiosis, celiac disease, any intestinal issue, really, can cause both an inhibition of the production of DOA (diamine oxidase, the enzyme that breaks down histamine) and they can cause SIBO.

      Soon after my celiac diagnosis about 16 years ago, I read up on SIBO and found that an Italian study (they are huge in celiac and SIBO research), found that something like over 80% of people (IIRC) diagnosed with celiac disease met all the criteria for a SIBO diagnosis.

  16. I have MCAS and until July of last year had been doing great on high dose steroids and histamine blockers. I had a stress induced flair in July and have been out of work since September. I am trying to find a DAO supplement, but currently it is hard to locate one. Do you have any ideas or a supplement that helps deal with histamine in the GI tract?

      • Unbrellux DAO brand has talc and shellac in the ingredients — are there any cleaner DAO products to be found? I am currently in need of taking DAO. Thank you!

        • There is only one worldwide source of the DAO enzyme. The extra ingredients make up the coating of the enzyme. This coating is necessary in order for the enzyme to make it to the small intestine with full activity.

            • Seeking Health no longer makes Histame Block which was their DAO supplement. They do sell something called ProBiota HistaminX which are probiota that are Histamine Intolerant friendly probiotics. I haven’t tried it yet.
              Prior to using Histamine Block, I used Histame which used to be a DAO supplement. I switched because it went off the market. When Histame Block went off, Histame came back, but is no longer a DAO supplement, simply some other enzymes and things like quercitin. The current available DAO supplement is Umbrellux DAO. The capsules look the same as the Histamine Block pills.

    • I have the histamine intolerance.

      I can drink my lemon water, and on it’s own, that’s just fine. But I follow it with strawberries & chocolate in my smoothie, leftovers with a kombucha for lunch, oranges as snacks, and spaghetti for dinner. Maybe throw in a glass of wine. I might be okay a few days like this, but it won’t be long before I break out into hives. When it was first happening, I was so confused. I was eating healthy. But now I know to be careful about how full my histamine bucket is.

      I keep the DAO in the cupboard. I’ve added moringa and EGCG to the pile as well.

      One glass of wine on its own isn’t what brings me over the edge, it’s a glass of wine on top of everything else. Always keep in mind the histamine threshold!!!

  17. I have been on an AIP- low histamine- low fodmaps diet for 2 years. I have also cleaned up my “world” in every way recommended for AI. I take digestive enzymes and probiotics.i take a multitude of supplements and homeopathic tinchers , and consume ginger and turmeric daily. I have just been diagnosed with MCAS and now understand better why all my efforts have been falling short to reintroduce any foods and why my chemical reactions are so strong. With that said, I will look into the presence of chemical toxins and retest for SIBO and gut dysbiosis. I am just not sure what else I could do holistically to calm down my reactions. Presently, double antihistamines daily aren’t even enough.. :(( I will also look for quercetin. Your info and suggestions have been so helpful Mark! I also appreciate Eileen Laird from Phoenix helix for sending me this link!!!

  18. Dr. Anne Maitland, is an allergist/immunologist. She treats Mast Cell activation syndrome, Mastocytosis, etc. Her has an office in Westchester county, New York. Not far from New York City.
    914.631.3283. Research her online. She has very informative video on YouTube. Dr. Maitland also does telephone consultations, if coming to her office is inconvenient.

  19. Hi,
    My doctor just diagnosed me with MCAD. The only symptoms I have are congestion, cough and tighteness of the chest. Allergy tests are all negative. I also have inflammation in the body.
    Could this all be MCAD related?
    Thanks!

    • My MCAD symptoms included tightness in the chest, and I was diagnosed with emphysema. As soon I got rid of all refined carbohydrates, all grain flours, and started eating raw eggs (we have our own chickens), my chest tightness went away. I don’t believe I really had a true emphysema, but untreated MCAD had caused changes in my lungs.

      I now cook my eggs, and follow a low histamine diet. I have leaky gut, which is more than likely the foundation of my problems.

      • Hi Janet, thanks for the recommendation. In fact I stayed away from wheat products for the past few months and the tightness went away. However as soon as I have some wheat products it comes back. I guess no more yummy bread for me 🙁

      • I have SIBO and was told by my GI that I have symptoms of mast cell activation syndrome. My vast symptoms seem to fit the disorder. I tried Quercetin with Vitamin C, two different supplements, and felt worse. Same with taking Claritin non-drowsy. Not sure why the Quercetin and Vitamin C would trigger a reaction when it’s meant to do the opposite.

  20. Thank you! I’m not crazy nor am I a hypochondriac. I have spent the past year investigating and researching and have found exactly what this article talks about. I have “Fibromyalgia, Uticaria with extreme hives, along with some beginning arthritis”. I have had some symptoms of a lot of different auto immune diseases. I’ve just been trying to not be exhausted all of the time, with varying levels of pain. So many years and so many doctors. I started to self-treat. It is hard to find a doctor who isn’t profiting from the pharmaceutical companies, and who would rather help people. I feel I’ve come down the road of blaming them now for this even happening. Back in the day, we were all shot up with Penicillin for everything from a hang nail to a runny nose. I feel that started us off in a very bad direction. Add sugar, and pop, and stress – and that should be the total package of bad gut. However, in my case, I was also hit by a car when I was 8 and spent months in a coma, and many, many brain and kidney surgeries later, was fortunate to come out of it alive. Only one kidney left caused other issues throughout my life. But I know for a fact I was on a lot of different medications to make me live (I’m not knocking them at all). However, 55 years of not fixing anything that got broken inside of me has left me feeling like I’m 103 years old. Over this past year, I have taught myself about probiotics – what kind, how to take, how to tell if they are working, along with learning about histamine overload, auto immune “diseases”, gluten as well as the basic hormones that my body naturally produces (and as it turns out, does not eliminate). Add it all together….. and this is where I am. I’m still trying to conquer some more like Gerd, the rest of my fibro, and the left over uticaria – which I’m sure is going to take a lot more time to completely get clear of. I just wanted to thank you for this article and proving – it’s not all in my head!!

  21. A couple of years ago I was suffering from what my allergist called chronic idiopathic urticaria and angioedema. His solution was a prescription of antihistamines, which kept them at bay initially. Eventually, though, I’d get breakthrough hives and swelling. When I suggested checking for gut dysbiosis since we were dealing with an immune reaction and I knew that 70% of your immune system is in the gut, he just dismissed the idea, saying there was no cure for my problem, that it would eventually go away and just double down on the antihistamines to keep the problem under control. Not being satisfied with that answer (actually, I called him a shill for the pharmaceutical industry), I went and found a functional medicine doctor who, after a bunch of tests, determined that, indeed, I was suffering from gut dysbiosis. She put me on an elimination diet to limit my intake of foods that would contribute to the dysbiosis, and gave me some suppliments to rid me of the overgrowth of certain bugs and finally had me take probiotics to repopulate my gut with the right bacteria. Once we completed the treatment regimen, the hives and facial swelling stopped and I haven’t had another case since.

    • Thank you. Yes, I understand allergists are typically too narrow minded. The big question is how to find a doctor who has bought into MCAD.
      I live near Springfield, Mo. if anyone has a name.

        • Dr Casey Tramp(Sastun Center) in South Overland Kansas. She is an MD but also certified in Fubctional medicine. Might be worth the drive. She has helped me tremendously.

      • Craig,
        I live in Willard MO and have MCAD. I would recommend Dr. Minh Thu Le at FD. She has been a big help to me even at my worst.

    • Hi,

      Looking for some insight for myself..

      39 yr old, male, no significant medical history.

      Suffering abdominal pain which is waking me up very early in the morning for over a year usually relieved by bowel movement

      Colitis has been excluded

      Also suffering hive like welts when I scratch myself. Typical very itchy scalp or other hairy regions in the evenings. Lights scratching leads to more scratching.

      Had no idea they would be related until I read this.

      Could this be part of the same problem? How do I rule this out?

      Thanks!

      • I have these exact symptoms. Use to be just a random itchy rash on my neck or face (I thought it was from mildew in our basement), it progressed to entire limbs itching (and of coarse swelling) in about 6 months. I have tried things in my own like probiotics, DIM, and Epsom salt bath. Then turned to the stinging nettle capsules, mixed herbal teas, and putting a dash of tumeric in food every day. I don’t get near as bad of outbreaks (maybe a red spot that I scratched here and there). I never linked the cramps and the bowl movements in the morning to it though – time to look up natural healing for my gut. Thank you!

    • Omg! I am so happy to read your response to this article!

      I have symptoms of almost a dozen autoimmune diseases that ebb and flow and have continued to do so relentlessly for the last few years — but have been on the backburner since early childhood, now that I look back.

      I received a vaccination during my first pregnancy that really sealed the nail on the coffin and sent my health into a complete downward spiral. I have been battling random swelling, edemas, hives, colitis, brain fog, breathing issues, insomnia, body aches, on and off for almost seven years now.
      But the urticaria and angioedema is most stressful to me, as it often affects my lips and eyes.

      During one episode, I was covered in hives, head to toe, for a full year.

      The urticaria has morphed into an angioedema nightmare for me. L-lysine and low-histamine diet as well as quercetin helped some, but still getting a lot of breakthrough.

      Just started with a functional naturopath who is suggesting testing for SIBO.

      I’m going to pursue this further and hope for an update like yours in the near future!

  22. Would this also help explain why some folks have heightened immune reactions to external allergen triggers- ex. mosquito bites?

  23. Hi! Very interesting! I’m currently being worked up for an allergic response that happens with increased heat (usually exercise, occasionally just hot days) I have had an anaphylactic reaction and now carry an epipen. It was brought up about histamine intolerance so I have been curious. We (ND and myself) have started this path by looking at foods as being the cause and have identified a few but wonder if histamine intolerance would play a role in this scenario. Any thoughts?

  24. Have enjoyed reading all the info here about mast cell disorders. I have suffered from maddening chronic hives (Urticaria) for 20 years.
    I have recently been reading up on Luteolin. It sounds very promising as a way to moderate mast cell production. Has anyone here looked into it or used it?

    • It’s in Dr Theoharides’ formulations of NeuroProtek. He’s kind of the forerunner in mast cell activation disorder/disease. Works and does his research out of Tufts University.

  25. I can’t eat much variety, and I would like to follow a plan to heal leaky gut. If that was the initial cause of my MCAD, I think what I am eating now will heal it, except for milk. The question is fresh, raw A2 milk. Does anyone know if it is okay when dealing with leaky gut? I don’t react otherwise and would like to continue to have a little every day, since it is one of the very few things that I don’t react to. Thanks

    • Hi. A2 milk recently came to my attention as A2/A2. It can be A1/A2 and it’s unclear to me if the second is free of the protein chain that most people react to in A1. Homogenized milk is pulverized into particles so small it leaks through the gut. Can’t comment on pasteurized, but if that would be an issue then surely you couldn’t cook milk in food either. You didn’t ask but let me add that in America wheat has been hybridized for gain until there’s a toxic protein in it. Therefore what most of us thought was celiac or wheat allergy is actually a toxic protein reaction. (A1, product of bigger cows, more milk, more money…ring any bells.). Anyway, it’s my understanding they’re trying to breed that toxic protein back out of wheat. Meanwhile some are finding that they can eat Turkey Red wheat but not other wheat. It is available online at heartlandmill.com

  26. Hello, I’m diagnosed by genetasist as having EDSHM and POTS, and autonomic dysfunction. I have flare ups every autumn and spring, like clockwork, every year. I also have immune dysfunction. When this happens, in addition to my other diagnosis my eyes itch, sting and water, my nose is blocked up completely. I have to take codine 30mg four times daily, for pain, which I know is contra indicated, but can’t take Tramadol as it gives me gastroparesis, so I’m kind of stuck. I take ranitidine, which I know is helpful, I am planning on seeing a specialist to help me, should I look for a haematologist? I’ve just joined the Mast Cell support group, so hopefully will find a suitable Dr. To see privately, my GP has no clue about managing my other problems, so need to do this ‘off my own back,’ as she’s already ‘over Faced!’ Thinking of doing low histamine diet, but it sounds so complicated.

    • Hi Clare,
      I can relate. It took me over 6 years to get diagnosed with MCAD. Due to the nature of MCAD, it can affect nearly any organ and cause almost any symptom. Although itching and nasal congestion are hallmark signs, POTS and EDSHM are also associated and I recommend seeing a doctor who knows what MCAD is. I’ve written a detailed article about what MCAD is, how to get diagnosed, what that entails, as well as treatment options including diet, medication, and supplements. You can read more about that by clinking the link to my blog. https://jakejonesnutrition.com/blog/2017/3/15/m7iok649de00ds7b3l9yv3d61ptqn8

      Good luck!

  27. Has anyone on here done the heavy metal detox? Which is the best one to do? i don’t want to waste money on something that does not work to remove the heavy metals.

    • Janet, my husband and I did a great heavy metal detox outlined in a book called: “Medical Medium” by Anthony William. What I like about it is he is not selling a product; he is outlining a way through products and foods you get from your sources. The cleansing diet cleared up so many challenges for me (including all-over body pain & inflammation), and help my husband heal his gut.

  28. I see that left over meat is on the list for foods that you shouldn’t eat if you have an intolerance to histamine. Does it make a difference if you reheat the meat? Thanks

    • Excess histamine is produced by bacteria on the meat which convert histadine and other amino acids into histamine and other biogenic amines. Unfortunately histamine is heat stable so re-heating the meat with not remove the histamine. Thus left over meats are contraindicated in histamine intolerance and mast cell acitivation disorder.

    • No it does not help. I freeze portions immediately after cooking and defrost quickly before eating immediately. Some very sensitive people can’t even tolerate that. I find my worst triggers are aged, smoked, brined meat.

    • You can tell because..you have anaphylaxis to anything..with out it being a true Ige allergy or reactions which effect your whole body..if Mast cell stabilisers help you are more than certain it’s mcad or mcas..the symptoms include..flushing,angiodema,dermagraphism,bone pain symptoms,urticaria,headaches,itchy throat ears eyes gums tongue skin..fibromyalgia..neuralgia..brain fog or memory loss..feeling of doom..ibs like symptoms..heart flutters..asthma..
      Your life as you knew it is completely changed as you will react to environment scents and polloutants..keep calm as your body will react to stress..lack of sleep..hormone changes..friction..heat..cold..medications..foods..the list goes on..if you have mcad..believe me you know about it…and if this condition doesn’t kill you..the ignorance about it will.

      • I understand you. Been sick for 24 yrs. No dx. Drs can’t figure it out. I had an open bottle of pills I was about to take last week. Not because I’m depressed but I’m sick every day of my life. With no dx I can’t get disability. Can’t work! My life is gone. I told my family I will fight one more round and if still no answer, then I need them to let me go. I believe this is my disease. As u said…u will know if it’s you. 5 ppl in my immediate family all have different variations of the same disease. I’m the worst off, and the only female.

        • Hi Doreen,

          I have Systemic Mastocytosis and I know how awful the symptoms can be (mental and physical). Have you tried Doxepin? It is an inexpensive tricyclic antidepressant now used more as a sleep aid. It has potential to help all symptoms, and can cross the blood/brain barrier to stop mast cell action in the brain. It might be worth a try, it’s helped me. Good luck : )

        • Hi Doreen:

          My name is Brigitte. I hop you’re still fighting this unfair fight. Please know that your experiences…your life are highly valued. Your disclosure has encouraged me. I have lived with pain all of my life; I was diagnosed EDS on May 11, 2017. I suffer with extreme weird pain that seems connected to mast cell like issues. I haven’t been diagnosed with MSD yet.

      • I have all of these symptoms but I still don’t know how I can determine if it is HIT or MCAS. I’m not sure which tests I need to take.

  29. Interesting article. I was diagnosed with MCAS in Boston in 2015. l live in NYC but there is no knowledge here about this condition. It took five years and eighteen different doctors before I made my way to Boston on the advice of a dietitian. She promptly resigned from my case after she suspected that I had a mast cell disorder. I believe that I have had this all my life but the triggering episode that tipped me over into a crisis was eating a bagel in 2010!

    I also have had SIBO, fructose intolerance and a parasitic infection (e. histolytica).

    Taking antihistamines and cromolyn sodium, following a low histamine diet and avoiding other triggers such as salicylates, gluten, eggs, dairy, caffeine and alcohol have been helpful.

    I was fortunate enough to be a participant in an NIH sponsored acupuncture study while trying to obtain a diagnosis. It did nothing for my allergy problems but it reduced many other symptoms that I experienced.

    However, my food allergies seem to be worsening. Peppermint has been a lifelong problem and now even just the smell of it sends me into sneezing fits.

    I would like to work with a dietitian but I cannot find anyone locally with knowledge of mast cell disorders. Three dietitians have dropped me as a patient. (And four doctors as well.)

    MCAS is a heavy burden to bear. It has compromised my access to medical care.

    • Lois, would you share the name of your Boston practitioner? I’m also in NYC and having trouble finding a doctor. I’ve been diagnosed with SIBO. I also have palmar and plantar fibromatosis, which are mast cell mediated.

      • I see Dr. Norton Greenberger, a gastroenterologist at Brigham & Women’s Hospital in Boston. He diagnosed my illness and has been following my case since.

        I also had SIBO and felt better after that was treated. My dietitian diagnosed it.

        • Thanks so much for the info, Lois. I’m sorry to hear the problems you’re having finding a doctor in NYC who will treat you. I too think there’s some reason doctors here don’t want to treat this, so people get bounced around from one specialist to another. In general, I’m finding New York has much stricter laws surrounding medical practice than, say, Texas. As a patient, it’s infuriating. In Texas a person can order her own medical screening tests, but not in new York.

          • Apologies for my tardy response, Sally.

            Actually it’s worse than that. I’m not looking to replace my Boston specialist, but I need other medical care, in addition to my mast cell problems. I’ve given up finding anyone here in New York to treat my MCAS. Several of my doctors here in New York have made my other medical care contingent upon my trips to Boston or they won’t see me, e.g. my foot surgery.

            Yes, New York State highly regulates medical practice. My tryptase test was sent to the Mayo Clinic for processing, and the tests that were run had to be approved by the New York State Department of Health. They refused to authorize one of the tests.

      • I’m not quite sure why this keeps happening to me here in New York. It is not an insurance problem. It just seems that the doctors here are aware of this illness but extremely leery of it.

        I saw a gastroenterologist here in New York who tried to cancel my appointment three times, and then admitted to me that she does not want me as a patient because of this diagnosis. I’m on gastroenterologist number four here in New York.

        In the case of my last dietitian, she is in partnership with a gastroenterologist. He read my case notes and decided that because I had experienced bruising at one point that I had Gardner-Diamond syndrome, a psychiatric diagnosis. In short, he does not believe the diagnosis of MCAS. So it seemed that my dietitian preferred not to see me.

    • Tamara Duker in NYC and Jessica Pizano in Ct. Both are mcas nutritionists. I live in NYC also but haven’t been diagnosed.

      • Not sure why you are referencing peppermint, but as a matter of fact, I have had a life long allergy to peppermint.

        I am now unable to eat foods that are high in salicylates, so my low histamine diet also excludes them. And that affects a huge swathe of foods.

        It seems to me that the longstanding peppermint problem and the more recent and broader salicylate problem are pieces of the same puzzle.

    • That story is me and my Husband and many people in United sates. I became severely ill to the point I was reacting to everything! There was no safe place for me to live, no safe clothes to wear, no safe water to drink, no foods….etc…I lost everything in life and had to live in isolation, away from my husband and loved one. My story is a very long story. Please check gofundme/PilarOlave and you will be able to get a better picture.
      While I was being treated at an environmental clinic in Texas I met lots of people facing this same disease. There are a lot of people suffering tremendously. My case is extremely severe because I even reacted to light, to electromagnetic fields, to touch, to smell, to ink, books…Was able to do anything. I was loosing my vision, I had trouble talking. There were times I couldn’t talk and I would just cry looking at my husbands eyes without able to say a word….

  30. Thank you for this article, and so glad to read the many responses. No diagnosis here- but have seasonal allergies, food sensitivities, angioedema (which is food, histamine and stress induced) as well as estrogen dominance, hormone problems, and many other things. I was trying to work on digestion, and have been eating way too many high histamine foods- totally forgot about not eating ferments. No wonder the angioedema has been daily…. Kefir and walnuts today triggered it, as well as migranes. I’m sure my cup runneth over with histamines. Is there anything to do about that?

  31. I also diagnose a shellfish allergy and a fish sensitivity during this time. I have noticed when histamines are high, I have night terrors and also visual hallucinations of colored lights when my eyes are closed.

    • OH MY GOD I HAVE THE EXACT SAME SYMPTOMS AS YOU!!! THE HALLUCINATION THING AND EVERYTHING!!1 I THOUGHT I WAS THE ONLY ONE!!

  32. So great to see MCAD being talked about from a functional medicine perspective! I was diagnosed with UP Mastocytosis as a child and was told that I would grow out of it. Fast forward to the age of 33 and I was suddenly struck down with every symptom you can imagine. MCAD. It took me a while to work out what was wrong with me and found an immunologist who has me on a large cocktail of medications. It has enabled me to care for my children again but I am far from healthy and have a long way to get back to health. I know that the medications are just band aids. We have no functional medicine practitioners here in New Zealand so I am pleased to read your perspective on it and will put your ideas into practice. Thanks for raising awareness?

    • JO! Found a interesting functional practitioner in my travels online who is is in New Zealand! Her name is Alison Odey, she’s a Naturopath and Osteopath and her site has a lot of good info http://alisonodey.com
      I contacted her regarding several excellent articles of hers online, regarding leaky gut, allergies etc, and also some navigation problems with her site but hopefully they are resolved now.
      Blessings
      Jay

    • Hi Jo, I’m in NZ too, and I have MCAD, along with a list of other things. Just wanted to recommend Dr Helen Smith (integrative GP) from Auckland Holistic Centre. She’s based in Auckland, but does Skype consults. I see her in conjunction with ‘The Holistic Nutritionist’ – Kate Callighan. She’s based in Wanaka and I speak with her via skype. Hope that helps 🙂

  33. I became suddenly very sick and was diagnosed with H-Pylori and treated with antibiotics. Since that time I’ve developed an unknown chronic condition, which I believe is mast cell activation syndrome (although I’ve been unable to find a doctor who knows what it is or who can diagnose it), and hyper-POTS (I’m hypermobile as well). Zantax 2x a day has improved my health enormously, although I still have issues with fatigue, getting overheated and brain fog. My concern is that my mother had a lot of intestinal issues in her 40’s/50’s and now has dementia. I recently read that there may be a connection with the gut and Parkinson’s disease…and I know this is a leap…but I’m curious if dementia could be caused in part because of gut issues as well. Any insight or thoughts on this? Thanks!

  34. I’m glad to see you blogging on mast cell disorders. Joshua Milner from NIH recently published a study on familial hypertryptasemia, showing a duplication in a gene that codes for tryptase. The condition appears to be autosomal dominant, and overlaps with Ehlers-Danlos hypermobility type and dysautonomia.

    One quibble with your article. Parasites get a bad rap. I think it’s important to point out that evolutionarily speaking, our species was nearly ubiquitously colonized with helminths, which strongly modulate the immune system, downregulating inflammatory cytokines like IL1 and TNF alpha, and upregulating others like IL10. Some parasites are nasty, but some are more accurately classified as mutualistic, and their lack within the modern world human ecosystem is a potent driver of systemic inflammation.

    Great read. Keep up this important work!

  35. Could this disorder be revealed through a routine blood test that identifies levels of various immunological markers? It seems that identifying food sensitivities and piecing it together to figure out exactly what’s going on continues to become increasingly difficult. I’ve been in the health industry for many years now and with people becoming more and more sensitive to foods histamine intolerance appears to be another factor in addition to other health problems as opposed to the sole issue itself.

  36. Definitely MCAS has to do with stress en gut disbiosis.
    Would be interesting to check on products lowering NMDA-stress axis in the body and PDE (fosfodiesteraseblockers). Check out http://www.exendo.be. They have also a specific probiotics infantis for HI en a new special product against candiasis. Interesting to explore!
    For SIBO as for gut disbiosis, first step is to check not only what you eat but also when and how, as stomach (acid) is the gate of further gutflora (and negatively influenced by stress). So don’t eat in between, don’t eat late in the night, supply stomach acid, combine well, and fast from time to time! Hope these suggestions might help.

  37. Chris — can you suggest any treating MDs or specialist type in San Francisco/Berkeley for Mast Cell Activation Disorder. Am needing this for dx/documentation, etc.
    Thank you for all that you do!
    Merritt

    • Hello

      Also looking for someone treating MCAS or a MCAS nutritionist/dietician in the San Francisco Bay Area. Or actually anywhere, if they’ll skye. Thank you

  38. For many people with MCAD medications and vitamins/supplements are triggers. Often we get sicker from the very things that the medical/holistic community give to “help” us. Foods in natural state and avoidance of additives, preservatives dyes etc. are key

  39. I have a bad histamine reaction when drinking certain types of wine while eating certain types of dessert. I say dessert because it only happens if and when I eat dessert, although it doesn’t happen each time I do. It’s an anaphylactic reaction where my chest gets tight, and my face and neck get very blotchy and red. I’ve been to several allegists with no clarity and have tried to journal what I ate and drank but it seems to be a very random reaction. I wish I could pinpoint it as it sometimes is a very difficult reaction, sometimes very mild and sometimes so bad I need to immediately take Benadryl because breathing is so difficult.

    Any advice?

      • I recently tested positive to artificial flavorings on a skin patch test-after a very immediate reaction while making cotton candy with my son where he used jolly rancher hard candies. My skin became immediately blotchy and irritated. I had my dermatologist at Mayo Clinic include the info for skin patch testing and artificial flavorings showed up as a positive reaction. I believe the specific reaction is to Balsam of Peru- which has quite a few “dessert like” ingredients. (Vanilla, cloves, cinnamon, ginger …. there’s a very long list in fact. Just thought I would share.

  40. I have had very high levels of inflammation in my body noted by blood tests in 1998. Before this I had had signs of arthritis in my 20’s and 30’s, but didn’t get x rays and scans for some years. My joints are so bad I was offered knee replacements at 49.

    In 1998 I had a hospital infection after a hysterectomy and pelvic repair, it was a urinary tract infection that wasn’t treated for around a month. I ended up as an emergency admission with heavy bleeding 10 days post op. Within 12 months I was showing signs of interstitial cystitis (IC), although I wasn’t diagnosed until 5 years later when I found my own urologist who is an expert in IC. During bladder biopsies high mast cells were found. I also now have hashimotos thyroiditis, low B12, Low iron, Low Folate, low B12. I have a diet rich in all these nutrients but absorb them badly. My hand and wrist consultant always said that my arthritis is a systemic one, but I’ve never had a firm diagnosis in all these years.

    Could the high inflammation, IC and Hashimotos be linked to Mast Cell Activation Disorder?

    • IMHO, investigate the oxalic acid/oxalates in your diet and the possible relationship to your IC and arthritis symptoms. The inflammation generated by the oxalates can/may be contributing to the autoimmunity as well. Address the oxalates and you may see an impact on your symptoms. Remember to stay hydrated.

      • Hi Mark, thank you very much for your reply. I steer clear of oxalates as they cause me more bladder pain, the same with acidic foods. I follow a strict IC diet and can only drink water, which I have done for 13 years now. My sleep is very interrupted with going to the bathroom every hour at night, and I know lack of sleep can increase inflammation. My most recent bloods my ESR and CRP are the highest they have ever been. My GP agreed with me years ago that my body has never switched off with dealing with the hospital infection I had. My health literally feel apart, my mobility was affected and muscle and joint pain increased enormously, I felt like I was walking through thick porridge, and fatigue was and still is very bad. No doctor has ever put all my symptoms together in order for a treatment plan. Now as I know I have high mast activity in my bladder, I wonder if this is a widespread problem for me. One other thing, my adrenal function not surprisingly is now very poor. I did 2 adrenal stress tests a year apart and I’m producing very little cortisol, and DHEA was flagged as low.

        • my thoughts- have you had a genetic test done for MTHFR? I have mutations that basically don’t process foods. Also, you should see a Mast cell specialist and have labs done.

        • What antibiotic were you given for infection od prophylaxis for the op. Many of the symptopms of MCAS overlap with those of Fluoroquinolone Toxicity Syndrome and it is possible that exposure to an antibiotic of this class such as Cipro or Levaquin could trigger mast cell reactions. Fluoroquinolones also cause widespread tendonitis as well and peripheral neuropathy.

        • Helen,

          “I did 2 adrenal stress tests a year apart and I’m producing very little cortisol, and DHEA was flagged as low.”

          This is serious! You likely have Addison’s Disease and need to be treated accordingly. I have AD and can tell you low cortisol, by itself, causes inflammation body-wide. Untreated AD is life-threatening. Low DHEA, produced by Adrenals, is also classic AD. You need to demand to see an endocrinologist and be taken seriously. Your illnesses are not causing your low adrenal functioning. It’s the reverse. Your adrenal insufficiency if contributing/causing many of your concerns. Also, NEVER EVER have surgery again until you are on replacement cortisone. Please do some research. I still don’t know the cause of my Addisons but was sick for years until I finally demanded testing – my symptoms were becoming severe – and got the diagnosis in my 40’s.

  41. Hello, I was dx with Dermatographia (by dermatology and allergists) and have suffered from it on a daily basis for 3 years but I stopped having “scrubs” at spas 8+ years ago because my skin would become severely itchy. I don’t get a rash all the time that I can see (I have lots of freckles). I have since by identified with MTHFR double mutation, a metabolic disorder/insulin resistance. I have been trying to follow the AIP program. Gluten and nightshades have been identified as triggers. I have not heard of Mast cell activation syndrome mentioned on your website.

  42. I actually suffer from mast cell activation disorder. In my area, I’m the most significant and through social media have connected with others with mast cell. Some aren’t as severe as me, some are the same, and a very few are a but worse. My treatment plan involves many h1/h2 blockers along with a chemo pill. We have had to do a variation of the histamine diet but my list of food I can safely enjoy is very little. And due to my MCAD I also suffer from Dysautonomia/POTS (postural orthostatic tachycardia syndrome) along with Gastroparesis and undiagnosed (at the moment) Ehlers Danlos Syndrome.

  43. The subject of the article deals with the immune system. But both the article & the posted comments do not bring up the possible connection with vitamin D deficiency which is a widespread condition in the general population. The action or vitamin D as an hormone is said to be of regulating an underactive or an overactive immune system. Vitamin D deficiency is associated with many disorders & diseases including autoimmune diseases. In fact it may be more than an association as studies start to show it is a cause or an aggravating factor in some cases.
    For instance this recent trial demonstrated that Hashimoto can be treated with moderate vitamin D supplementation (4000 IU):

    Is vitamin D related to pathogenesis and treatment
    of Hashimoto’s thyroiditis?
    http://nuclmed.web.auth.gr/magazine/eng/sept15/07.pdf

    As thyroid problems (from any cause) are affecting multiple illnesses, it seems a good idea when suffering from a difficult to diagnose health issue, to start by having blood tests for vitamin D & thyroid markers.

    P.S.
    An other recent example showing vitamin D, beside its preventative role in reducing the risk of many diseases, being used for treatment :

    Vitamin D Supplements May Improve Cardiac Function in Heart Failure Patients
    http://tinyurl.com/jz8jmlg

    • My vitamin d level is basically nonexistent. I’m in the process of labs for Mast cell disorder diagnosis. I do think the vitamin D deficiency is a part of the problem for me, but I doubt that every Mast cell disorder patient has low vitamin D, if it was that obvious they would’ve figured it out already. Many people find that their Mast cells greatly react to fluctuations in hormones, for example, menstural cycles.

    • I would have to agree on this possibility, there has been so little research towards what causes issues. Vitamin D is linked to so many of our processes; with us using up what our bodies have stored and not replenishing it, in our 30’s is when these symptoms start appearing (when there are no other underlying conditions).

  44. My husband had histimine intolerance following antibiotic treatment for lyme. From my research, I believe he developed SIBO after the antibiotic (had been on a probiotic, but not a histimine friendly one because we didnt’ know better.) He broke out in a rash daily after that. He has a long history of migraines and what I call “crash and burn days” (just feels awful!)… he can’t tolerate any alcohol, whereas he used to only seem to be sensivitive to beer for years. He has been eating clean, taking soil based probiotics (from Chris Kresser online store), avoiding high histimine foods,.. it’s been almost 2 years, but his symptoms are much better. No more rash, few headaches. Sometimes it feels like he’s teetering on the edge, though, and a bad cheat day or extra stress will throw him back over. We haven’t been able to afford a full-blown functional medicine workup, so I’m reading a lot and trying to educate myself.

    • Both Prescript Assist and Primal brand probiotics cause histamine hives to appear on my face. I’ve heard that histamine-free probiotics are available but I’ve not tried them because I’m a bit distrustful at this point.

    • Careful, some probiotics are “histamine producers”. You wanna take the critters that are “histamine reducers”. Google them.

    • Hey there,

      I also had antibiotic treatment for lyme disease and now have high tryptase indicating some kind of mast cell disease. My doctor is an immunologist who has me on a number of histamine and other type of allergy medicines. I am (trying) to follow a low histamine diet, but it is hard. I have the history of headaches and good/bad days and poor reaction to stress that you mention in your husband. This sounds so alike…hmmm.

    • If you’ve got health insurance, I recommend finding a doctor who specializes in MCAD. I’ve got MCAS, and I can reduce my symptoms substantially with “natural” methods, but sometimes drugs are needed. Also, there’s not cure for MCAD, and I haven’t heard of anyone feeling 100% better. Its more of a management thing.

      • I agree with your comments. I, too, have MCAS but I can’t imagine an unmedicated life anymore, despite following a strict low histamine diet. I have recently returned to work full-time, and I don’t think that it would have been possible without my medications.

        My mast cell specialist told me that if you have a mast cell problem you never really feel well again. I concur. It is a highly management intensive illness.

  45. While this article gives some terrific information in typical Chris Kresser fashion, there are still inaccuracies. Not even functional medicine knows the root cause. And if you’re a practitioner, you know that not everyone who has heavy metal toxicity or gut dysbiosis or CIRS have histamine or mast cell issues. The root cause has to be true for 100% of the population for it to be entirely valid, according to the Journal of Theoretics (2003). Chris, please learn German New Medicine! Once you do, you’ll understand the real role of heavy metal toxicity, gut dysbiosis and chronic inflammation and you’ll be able to educate – and help – many, many more people.

  46. After struggling for 2 years with severe localized headaches, leading to a bout of intense diarrhea and vomiting and losing 20 lbs. I was finally diagnosed as having histamine intolerance and I have noticed amazing improvement by avoiding histamine rich foods but there are times when I still suffer from symptoms and I am at a loss to know the cause.
    I am writing from a medical suppervised fasting clinic in Germany, the Buchinger Wilhelmina , where last year I underwent a 21 day fast with amazingly results! When I returned home I was symptom free for a full 3 weeks eating pizza, cheeses and drinking red wine! I really thought that I was cured but then I became sensitive to histamine again but not to the extent that I was before. This time I am here for a 10 day fast and I plan to be much more careful upon my return home. I will let you know my results.

  47. MCAD may be the explanation for my itchy skin and the raised brown spots that erupt mainly on my back, but also on belly and upper legs, and a few around the hairline on my face.
    I thought it might be dry air in Ontario winter, because when I escape the cold into warm tropical heaven the itch goes away. The spots remain however. The dermatologist says it is genetic and that removing them useless because they come back. A red spotty rash appears and skin is itchy again.

  48. I was born with urticaria pigmentosa, which I’ve always understood to mean that I have overactive histamines, which usually results in bad reactions to big bites (my whole life). My doctors, including my allergists, have never connected urticaria pigmentosa with any other health problems. I’m wondering if the condition you describe in the article is almost the same as UP? I have suffered from extreme seasonal allergies which began after I turned 30, as well as exhaustion and depression. I started eating whole30 this summer and have more or less kept it up because it makes me feel so much better. I more or less eat paleo. I still have depression, allergies and exhaustion, just on a much smaller scale than before changing my diet. I feel I need to address my problems more deeply and this seems like a good avenue to pursue. Would an MD recognize mast cell disorder? I want to know more! Thank you for this article!

    • If you adopt a Low Histamine diet/lifestyle you’ll be able to discern for yourself whether histamine inducing foods, enviroment, supplements and stress you generate is an issue for you. The stress you generate contributes to yer histamine load. Try it! It’s A LOT of work and discipline but worth the effort.

    • Yes, I can recommend one in particular. Dr. Afrin is who I saw to get diagnosed. Unfortunately, he lives in Minnesota. There are other doctors who are learning a lot about it, you just have to search for one. Urticaria pigmentosa is indeed associated with MCAD. Most people have seemingly “unrelated” symptoms.

  49. Hi,
    I’m allergic to tree pollen (birch and alder). In early Spring, when the trees are pollinating, breathing the air will cause my histamine to overreact.

    However, while I’m sleeping, breathing the same air, my body is calm. Within 5 minutes of waking up, the histamine will overreact. Even though I was breathing the same air 5 minutes earlier.

    So, the question is… What is the difference between sleeping and waking up? Why does histamine not overreact while I’m sleeping yet the histamine does overreact while I’m awake. Remember, I’m breathing the same air.

    While I’m sleeping, something (or lack of something) controls histamine levels.

    When I’m waking up, something (or lack of something) enables histamine to overreact and inflame.

  50. I stumbled on the whole histamine disorder when getting ready to do an elimination diet this summer. I felt lousy, had frequent headaches and recently realized my heart was racing and I was out of breath with the slightest exertion. I am borderline prediabetic as well. The elmination diet was helpful but I did not find any overt allergies. I did however notice that I could tell a difference when I eliminated sugar, caffeine and histamine producing foods. I have never had a proper diagnosis though.

    • Histamine Intolerance is cumulative. Overload yer system’s ability to degrade it and it’ll whack you. The more you overload yer body’s ability to process H the lower the threshhold becomes.

  51. You mentioned the important use of hitamine in the body. I work for a mental health team where the psychiatrists often prescribe phenergan (an antihistamine) to help people sleep. What do you see as the dangers in doing this given the importance of histamine in the body?

  52. I was diagnosed with Mast Cell Activation Disorder by the allergist at the local hospital about 4 years ago, but now rarely experience any symptoms since taking two rounds of high-dose garlic about two years ago.

    Prior to diagnosis, I had been eating paleo for a couple years and had also tried Whole9 and not gotten relief from the symptoms of mast cell activation (similar to low-grade anaphylactic shock multiple times a week). A low-histamine diet helped some. It seemed that I was sensitive to any foods high in histamines or sulfites. (“Fresh” fish was especially potent.) I was prescribed daily over-the-counter ranitidine and cetirizine which mostly controlled the symptoms but I was still feeling mildly ill most days and had gained 15 pounds in a year.

    I went to a naturopath, who diagnosed SIBO. She prescribed a round of high-dose garlic followed by re-introduction of probiotics. I began to feel ill again and did a second round. That was almost two years ago, and I have felt ill only about a dozen or so times since. (When I do have symptoms, Benadryl stops them.) I have been trying to re-introduce probiotics with mixed success, and I continue to slowly increase my consumption of fermented foods. I’ve gained about 30 pounds since taking the garlic, but I’m very much happier with not being sick anymore.

    Interestingly, my circadian rhythms were very much out of sync before taking the garlic. Within three days of starting the garlic each of those two times, I suddenly began waking up naturally at 7am. I’m still a bit slow moving in the mornings, but usually wake up naturally between 7 or 8am. Also, I had been anemic for decades despite eating meat and taking iron and B12 supplements, but last year tested as no longer anemic despite no longer taking supplements.

    Just thought I’d throw my experience out there if maybe it could help anyone else.

  53. I started suspecting MCAD after being hospitalized (abroad!) two years ago with what I believe was complete mast cell degranulation. While I’d had hives before, I had never experienced anything like this: tiny red dots started appearing on my stomach and grew into massive hives. This spread over every surface of my body and as one area of my body improved, another area started developing hives. This went on for one day and it took four days of steroids and rest in the hospital to get it under control. Unfortunately, no one at the hospital spoke English and I certainly was not diagnosed with anything. I think the following combination of triggers caused this degranulation: extreme vibration (riding on a very bumpy road), travel stress/fatigue, and staying in a new hotel (off-gassing chemicals).

    Before this hospital stay (which came the summer after year six of my PhD program), I had intermittent problems with “pressure” hives (near my bra strap at the end of the day, on my back when I would wake up, on my shoulder where my bag strap rests), heartburn, acne, teeth grinding, low blood pressure, high heart rate at times, and anxiety. All of this had started in the first year of my PhD program so I know stress is a big part of the equation for me. However, I also believe there could be a trigger from all the international travel I’ve done to developing countries and the poor diet I had while living in one specific country for a year due to poor food quality.

    My symptoms are definitely of the gut-brain-skin variety. I have had vague gastrointestinal issues, been treated for anxiety and depression, and have been diagnosed with rosacea (of both the skin and eyes) and excema (although removing eggs seemed to get rid of that!). These have all been diagnosed in the past seven years (since starting grad school). I also developed a shellfish allergy and a fish sensitivity during this time. I have noticed when histamines are high, I have night terrors and also visual hallucinations of colored lights when my eyes are closed. I have also noticed that the combination of drinking a beer and having too much cheese causes sharp stomach pains and I usually throw up. The last time this happened was two years ago after a friend’s wedding where the following Italian-themed foods were served and eaten by yours truly (who also happens to be half Italian): deli meats, pickles, cheese, nightshades, and alcohol. I will never make that mistake again–I felt like my stomach was going to explode!

    Since my hospitalization, I have gone on a health journey to figure out the best combination of diet, exercise, and meditation for my body. I meditate through yoga everyday, do cardio several days a week, and I try to be careful with diet. When I switched to eating (primarily) paleo, I used to batch cook but now I freeze leftovers immediately to decrease added histamines. In general, I avoid dairy (cheese is the worst), nightshades, alcohol, and anything fermented. When I cheat, I do find that Histamine block works — I can tell that my histamines are raised but I don’t get sharp stomach pains or throw up.

    I’d really like to address the systemic cause for me, which currently seems to have a mold connection. My histamines have been extremely high since allergy season last spring. This has meant painful menstrual cramps (which are histamine-mediated), constant facial flushing, and extreme sensitivity to mold (walking into a room and knowing there is mold or mildew) and chemicals (esp. perfumes which get ‘stuck’ in my nose for hours after someone passes by). I’m hoping that cleaning up my diet will help alleviate some of this, but I’m also hoping to try some of the suggestions left in the comments.

    Thank you for sharing your experiences!

  54. Me just tracking all these connections also
    Anyone else out there making the connection with migraines ?
    I get several a week & find relief basically from coffee enemas that often release the ascending heat & pressure
    Thanx

    • my headaches went away when i treated MCAS. also you will find the anti migraine diets are similar to low histamine diets…

        • mast cell blockers (sodium cromolyn) was big changer, plus low histamine diet, low oxalate (in my case MCAS trigger), supplements like Quercetin, meditation, hypnotherapy with an amazing women who specialises in mast cell issues. in theory also H1 / H2 blockers but they have done less for me.

    • I got relief from my migraines by taking 500mg of magnesium oxide daily, but it still leads me to believe that there is a reason for the mineral deficiency…..likely gut issues. I start to get relief when I’m on a strict AIP diet, but sugar really throws everything out of whack.

      p.s. I refer to it as a “volcano” migraine 🙁

      • A possible reason for the Magnesium deficiency is Aluminium toxicity. I am finding that almost everyone I test for heavy metal toxicity has high Aluminium. This blocks the absorption of Mg. Here in Australia, aluminium sulphate is added to the town water supply to help get rid of the dirt but obviously this has its downside. The other reasons for high aluminium is anti-perspirants, vaccinations and food storage (cans etc).

  55. I acquired sudden-onset histamine intolerance from increasing foods that were high-histamine, such as liver and canned tuna, in my diet. (I was trying to increase vitamin B12 intake).

    I believe the trigger was liver that was on the verge of being spoiled.

    Prior to that, I had no problem with high-histamine foods except a shellfish intolerance dating from my 20s and probably inherited from my father. I didn’t have persistent rashes or migraines or other typical MCAD patterns.

    I went on a gut-healing regimen for perhaps 6 months and the histamine diet. Now, I’ve been on the histamine diet for several years. My sensitivity to histamine-containing foods has decreased. I am wondering if I will ever recover my ability to eat normally.

    I am particularly sensitive to coriander aka cilantro, an ingredient in many delicious cuisines (Thai, Indian, Vietnamese, Mexican) that I used to enjoy. Do I have MCAD? Has anyone ever recovered from this type of histamine intolerance?

    Do I dare ask how long recovery might take?

  56. I need to find a doctor in Michigan who can diagnose MCAS in my daughter (18 yr old) and possibly myself. Any recommendations? Having a difficult time finding one. I’m in the Detroit area though my daughter attends college in Grand Rapids, Michigan so either area would work. I had her tested by an allergist but found he is only aware of mastocytosis. Please help!!

  57. Professor Theoharides gave a lecture last week at the TACA autism conference on mast cell activation and brain inflammation. The mast cells don’t have to degranulate and release histamine to be activated and cause problems. Mast cell activation in the blood brain barrier causes inflammation in the brain. (It activates the glial cells in the brain.) This might be one reason so many people with dysbiosis suffer with “brain fog”.

    There are different mast cell stabilizers. The most potent he has found is luteolin. He revealed that he is on the board of directors of Algonot, a company that sells luteolin products. In one study, half the people with autism regained the ability to speak after being put on his luteolin products. (Some luteolin products have trouble with their quality control presently. So, for now, I’d only use the Algonot products.)

    The luteolin is made from peanut shells. It contains phenolics. (You don’t want too many phenolics. It can slow down your liver and detox pathways.) So, don’t take luteolin with large amounts of phenolics. Be wary if you are estrogen dominant. Estrogen is a phenolic. Be wary if you have COMT++, because removing phenolics may be difficult for you.

    For those who cannot tolerate phenolics, he has a skin cream containing a form of luteolin where all the phenolics have been removed.

    • Isn’t the issue why the mast cells are overacting. I believe its toxins. one in particular is sulfites. Sulfites need sulfur oxidase to be processed into to sulfate in the body. You might find that high levels of heavy metals such as lead/mercury inhibit sulfur oxidase.

  58. I live in NZ and have struggled with histamine issues for 5 years – unable to get any help from a GP, it was a dietician who suggested I might have this disorder, unable to get any testing and just sort of battle on. I really don’t know what I can do, I live on a very low histamine diet but about 6 months ago IBS -D also started. I did not have that before. I do not tolerate any supplements, not even vitamin C in any form at all.

    • Have you tried non-corn buffered vitamin C? That is probably the easiest form of vitamin C to tolerate. If a product doesn’t say where the vitamin C came from, it is probably the cheapest source, which is corn.

      • Yeah try non-corn buffered vitamin C. It may not even be the vitamin C, since those with MCAD can react to just about anything, including fillers, dyes, etc. You want buffered vitamin C because it will digest a little slower. Unbuffered vitamin C will be in and out of your body in no time.

    • Have you tried vitamin c made from something other than corn? I can’t tolerate Vit C made from corn, but do really well with the non-corn varieties.
      I don’t know what is available there, but in the US, Perque sells one made from potato and Ecological Formulas sells one made from Tapioca. The Perque ones are large tablets, that can be hard for some people to swallow. The brand Organic India sells a product called Amalaki (made from amalaki berries) that has a lot of Vitamin C, but some of their products are believed by some to contain lead, so I’d be careful to check that one out if you decide to go that route.

      The non-corn varieties are getting harder to find. Hope that may help.

      • I’ve found the Alive brand has a fruit based vitamin C and Allergy Research has a cassava based vitamin C.

        From what I’ve gathered, ascorbic acid and ascorbyl palmitate are both derived from corn.

        • This is in response to a comment about vitamin C and ascorbic acid which if you are aware than I apologise. Ascorbic acid is only part of the Vitamin c complex, namely the antioxidant protective shell of the complex. The VC complex consists of Vitamin P which is the Bioflavanoid, Vitamin J which is the lung/anti Pneumonia vitamin to assist the lung to inhale oxygen efficiently. Vitamin K which is a blood clotting vitamin and copper; each vitamin within the complex comes complete with a mineral to form an enzyme Tyrosinate which is a precursor to build adrenal hormones, in fact the adrenals are a reservoir for Vitamin C. If any tablet supplement for ‘Vitamin C’ is greater than 100mg, chances are its made of corn starch and sulphuric acid, and probably GMO corn. If you want to take a Vitamin C supplement I would take Ester C with citrus bioflavanoids from American Health or even better from fresh or frozen orgainc fruit.

    • Check out Yasmina the Low Histamine Chef. Google her. She has lots of suggestions and years of personal experience. I found out about her here on Chris’s site a few years ago. Also, Lara Briden is a Naturopathic doc from Canada who now lives in NZ. She can probably help you too.

    • Hi Cherie

      I also live in NZ. Have you heard of Dr Steve Joe? Be worth emailing him your history and see if he can do something to help. He’s not cheap but appears to be very good.

  59. Great article! It seems that I cannot tolerate most food these days. I either get a burning hot, red face & ears, super itchy, hot flashes, or severe stomach issues & dizziness. I used to rotate my food, but am not even able to tolerate the few foods I used to be able to eat. I’m hypothyroid, have Chronic Fatigue Syndrome, IBD, Fibromyalgia, anxiety, hormonal imbalances, hypoglycemia & a bunch of other things. My white blood cell count is always low, BUN always high & have the double MTHFR mutation. I’m not sure how to bring this up to my Dr. She is not educated in field. Is there a certain lab test that I can have her order for me? Thanks so much!

    • Hi Jamie

      I was just reading this article and I came across your comment. You have several issues that appear to be all related. In the words of Dr Jacob Teitelbaum you have tripped the circuit breaker in the Hypothalamus. This part of the brain is a link between your endocrine system and the Autonomic Nervous System (ANS) that controls 1. sleep 2. Hormone function via the pituitary gland 3. Temperature 4.Autonomic functions (Blood pressure,pulse,bowel function and peristalsis.

      Whenever, an individual has an energy crisis to protect further damage the hypothalamus goes into a hibernation state. This is generally caused by infections, hormonal deficiency,toxicity,nutrient deficiency, stress. All your conditions are autoimmune in nature caused generally by immune system confusion or chaos…the immune system is attacking its host and since most of the immune system is located in your gut this is generally related to gut dysbiosis. It is quite possible your gut flora ( the wonderful world within us which is our bacterial garden) is unbalanced in terms of beneficial and non beneficial flora.

      One thing to remember there is nothing on this planet greater in terms of design than the human body. It is highly intelligent, designed for health ( its default state ), self healing and self regulating. You may not agree but all your issues are due to an intelligent response of the body, but if you dont put the correct fuel in you will, as it is perceived by you currently, physiological dysfunction. The same situation will occur if you dont change the oil in your car..its not that your car is breaking down its because you have not maintained its running requirements. This is how conventional physicians approach the body like a broken down volkswagon and not with respect and awe as they should do and prescribe medicines to work with body not against the body.

      Once you begin to maintain your body as it is designed the body will self heal and hypothalamus will retrip its circuit breaker and come back on line and your symptoms will gradually disperse. First of all you need to supplement with all 90 essential nutrients ( 60 minerals, 16 vitamins,12 amino acids, 2-3 essential fatty acids) using either a liquid or powder whole food supplement ( you will have to research on line there are a few good products out there. My aim is to try and help not flog products but since your current condition is emanating from the gut you need a good probiotic so Supergreens (LivingFuel) has everything that you need for now ). Believe it or not the 90 essential nutrients is the basic fuel for all humans to realize their inate, as designed, self healing mechanism. I would start taking some good proteolytic digestive enzymes before each meal and try and consume a good natural unsweentened Kefir since this contains some good live bacteria to repopulate your gut flora ( Yoghurt does not provide probiotics as advertised it simply cleans your colon).

      I dont know what your diet is like but make sure you are consuming large amounts of organic ( if possible ) cruciferous vegetables ( brocolli,cauliflower, cabbage,brussels sprouts ), carrots etc. In addition try and eat at least 1-2 cups fresh ( or frozen) fruit like blueberries,raspberries, banana, papya,mango ( when in season ), pomegranate etc. You should include some raw food in your diet. I personally blend vegetables ( not juice because this eliminates the fibre that your colon needs) which include dark leafy greens like Kale ( the liver loves bitter dark greens like kale ), pissenlit, swiss chard, beet tops, ginger, lemon,lime,cucumber,celery. organic apple cider vinegar ( contains acetic acid and helps with stomach acids for digestion). Since this juice mix can be bitter I sweeten it a little with banana, some organic berry mix, and an apple. You can play around with the ingredients that suits your taste by eliminating some ingredients and introducing others like Spinach, cress, parsley etc. From time to time I addd some fresh Aloe Vera which is good medicine so dont always add it say every 2 months. Buy a good blender thats strong enough to chew up some of the hard stalks

      Since we are all unique in terms of food tolerance and nutrient absorption you may need to experiment a little but you are experimenting with fuel that is designed for your body not prescription drugs that are poisonous and work against the body. It would not hurt as well to take wheatgrass for a month or two because this is pure chlorophyll ( the natural blood of plants ) and is almost indentical to our own heamoglobin and is a great healing substance that will provide body healing B vitamins and purify your blood which is probably toxic at the moment ( Since this is a medicine you should only take it for about 2 months and then stop for a while..anyway see how you feel..only you can determine what is right for your body, NOBODY ELSE including naturopath, conventional medicine doctors, NOBODY just you) You only need a teaspoon of wheatgrass with water on an empty stomach every morning, try and swill it around in your mouth for a few minutes before swallowing.

      I would take it easy at first in terms of dietary changes. Let the whole food supplements start to heal your gut and gradually your food intolerances will subside and then start to introduce dietary changes. There is one important aspect you need to know. The autonomic nervous system (ANS) that controls all sub conscious control of your body is split into 2 parts Sympathetic ( which activates during your awake state and controls the fight or flight mechanism (stress related), arousal,energy, inhibits digestion, increases heart rate etc) and the Parasympathetic ( which activates your rest and digest functions, digestion, allows rebuild function of body tissues, lowers blood pressure etc). These two functional sides of the autonomic nervous system must be balanced for health. Everything that you consume has an effect on the symmetry of this vital physiological system and trauma, injury etc can also effect the mechanics of the skeleton and impinge the functioning of the ANS so it would not hurt to visit a good chiropractor to check your nervous system for sublaxation. Since I play tennis 9 hours/week I visit my chiro every month to maintain ANS symmetry.

      Avoid all processed food..if God didnt make it dont eat it, stay away from modern medicine they are just dis-ease managers ‘papering over the cracks’, and most of them are flat earth thinkers. If you want to learn more view the video from Jacob Teitelbaum for the link below:
      https://www.youtube.com/watch?v=KuIRDzUDO3o
      and view the excellent presentations of Dr Bergeman on autoimmune for example from the link below:
      https://www.youtube.com/watch?v=zGmyUppmt-g&list=PL9kk20gT7X-QEKme2-MxedaO8wMBRR7cX&index=6

      Dr Teitelbaums take home message is the following to cure your condition:
      SHINE ( Sleep,Hormones,Infections,Nutrition,Exercise )
      I have not mentioned exercise or sleep but these 2 activites are vital. Sufficient sleep is essential to reset your body and allow rest and digest. Exercise can be just walking for 1/2/day since it stimulates many functions in your body – Apoptosis ( natural cell death), Autophagy ( natural cell recycling ), Gluthathione production ( the bodys most powerful antioxidant) etc.

      If you need any more assistance You can simply reply to this comment and I will receive it in my email box. In order to empower yourself and your health you need to do the research. Only you have a vested interest in your health. Good luck on your road to recovery and health. Remember your default condition is HEALTH not disease so help your body to get back to this state.

      best rgds

      ERIC

      • Thank you, Eric for for taking time to assist others who are in crisis and seeking answers from natural medicine. Many of the folks who will benefit from this advice are presently intolerant of COUNTLESS foods, supplements & chemicals. The inclusion of just a few of these squeaky clean health foods would make some gravely ill. Before adding a new food or supplement I do a form of muscle testing demonstrated to me by an RN. Rub your hands together between samples. Clasp a sample of item to be ingested tightly in your fist and hold it under your breastbone. Stand on flat surface w your feet spread apart. Relax and ask is this safe? Wait patiently for your bodyweight to pull you forward for yes or back for no. Multiple ingredient supplements may yield a conflicted response. If you have absolutely no luck with this self test seek guidance from a chiropractor or turn to YouTube. There are many excellent suggestions in this post. GO SLOWLY.

      • This is all great info but it’s really hard to do this when your body is reacting to literally everything- meds, environment, stress, food, etc. you get down to minimal “safe foods” and try to rebuild adding more foods all while just hoping you don’t tank and have to start all over again.

      • Hello Eric,
        I will be brief. First, thank you for your informative post and time in helping others.
        My question, have you any thoughts on Luteolin?
        Thank you.

    • I would say that no other illness besides MCAD would come close to the symptoms you’ve got. I too have dizziness and IBD, and some of the other symptoms you listed. Took me along time to figure it out and get diagnosed with MCAS. Its a complex process, but you would like to learn more, you can check out the articles I wrote by clicking the link. https://jakejonesnutrition.com/blog/histamine-and-mast-cell-activation-disorder-your-weird-symptoms-finally-answered

  60. I only learned of MCAD recently. My 15 yr old daughter was diagnosed this year with dysautonomia, a dysregulation of the autonomic nervous system, a truly baffling and disabling condition. Dysautonomia International is holding an education symposium for children and adolescents dealing with dysautonomic conditons including MCAD in early December. It’s being held in Orange, CA at Childrens’ Hospital Orange County (CHOC). A separate symposium for Physicians is being held simultaneously!
    http://www.choc.org/events/ ehlers-danlos-syndrome- symposium/

  61. Almost forgot! Thank you Chris Kresser, I know of histamine intolerance and it’s RX from you, from your newsletters and articles, thank you!

    • I want to second that. If it wasnt for Chris, I would have never put two and two together and asked my naturopath to look into HI. Thank you!!

      • Yep, Chris started it for me a few years ago talking about histamine. This article is perfect, because it took me another couple years to figure out and get diagnosed with MCAD.

  62. Oh absolutely I have histamine intolerance! Has any testing been done? NO! Western medicine doesn’t given a damn, my ND and I just treat it! I take the diamine oxidase supplement, try to avoid high histamine food and take all the supplements you’ve listed. I can’t tell you how nice it is to not be exhausted after eating (especially the evening meal), to not have a gut ache, to have more energy overall and to have the eczema be much less!

  63. Periodically, both my husband and I have histamine reactions characterized by itching and rash usually on our forearms when under emotional/physical stress. The itching and rash last for about 10-20 minutes and then resolves itself. Unfortunately for me, my husband developed these signs/symptoms on June 17, 2016 during a police interrogation in our home. Long story short, I was arrested and jailed because the police officer falsely assumed that I assaulted my husband and caused “injuries” to his left forearm, which my husband tried to tell the officer that the itching (not injury) came from histamine-induced stress reaction whereby caused him to scratch himself. In fact, the redness and scratch marks had already disappeared by the time I was handcuffed and led away to the police car. Even the CSI photographer (who later arrived at the house) could not capture any visible signs on my husband’s left forearm.

    My husband and I are in disbelief and anger that the police officer could not distinguish between a rash versus an actual physical injury that he would make such a harsh determination to arrest and charge someone (me) of domestic violence, which is a felony with a $50,000 bail.

    As it stands right now, my fingerprints, jail photo and DNA information is stored in the federal criminal database for life. Unbelievable.

    Is there any way for me to make a case for myself in trying to clear up this great misunderstanding and injustice? Any advice would be greatly appreciated!

  64. I am trying to recover from pneumonia and atelectasis, still have heavy post nasal drip and some chest noises (7 weeks, 3 different antibiotics) have a history of sinusitis, plus IBS with intolerance to grains and dairy, (which I avoid) now asthma has been mentioned as a possible explanation for continuing symptoms – worst of which is exhaustion. Also have face pressure, painful glands under jaw, extreme tinnitus, frequent earache, and suddenly very little saliva! My GP is concerned, but somewhat baffled. Maybe MCAD is an answer of sorts? Anyone out there as weird as me?

    • The dry mouth and jaw problem maybe Sjogrens syndrome? Could you be hypothyroid(hashimotos auto immune)? You may have a problem with gluten, even though you don’t eat cereals its easy to get glutened through so many other foods. Just a few thoughts due to things I have experienced, I have Hashi and also celiac, (Dermatitis Herpetiformis no biopsy) and fructose intolerant. Also had the symptoms of Sjogrens but it went away after agressive use of pre-and pro-biotics and coconut oil.

  65. Hey Chris,

    I’ve been working on healing from a whole host of things and it appears that histamine intolerance and, potentially, MCAD, may play a large role in my recurring INTERSISTIAL CYSTITIS symptoms.

    Can you refer me to any resources which speak to holistic methods of healing this bladder condition??

    Thanks!!

    • There is a urologist in the UK who treats IC as a mast cell disease in some of his patients with great success–low histamine diet, DAO, mast cell blockers… on forums some people get great relief by just going low histamine, others low oxalate diet, others both…it seems very individual but definitely can be MCAS related!

      • I have had very high levels of inflammation in my body noted by blood tests in 1998. Before this I had had signs of arthritis in my 20’s and 30’s, but didn’t get x rays and scans for some years. My joints are so bad I was offered knee replacements at 49.

        In 1998 I had a hospital infection after a hysterectomy and pelvic repair, it was a urinary tract infection that wasn’t treated for around a month. I ended up as an emergency admission with heavy bleeding 10 days post op. Within 12 months I was showing signs of interstitial cystitis (IC), although I wasn’t diagnosed until 5 years later when I found my own urologist who is an expert in IC. During bladder biopsies high mast cells were found. I also now have hashimotos thyroiditis, low B12, Low iron, Low Folate, low B12. I have a diet rich in all these nutrients but absorb them badly. My hand and wrist consultant always said that my arthritis is a systemic one, but I’ve never had a firm diagnosis in all these years.

        Could the high inflammation, IC and Hashimotos be linked to Mast Cell Activation Disorder?

  66. Chris, I have researched this for 13 years on my own. Yes, it is the same thing. I have managed it with low-histamine diet, along with fish oil, flaxseed oil, garlic /allicin, aloe vera supplements, vitamin C and Histamine Block (DAO supplement).

    I would love to share my story if you were ever interested!

    For me it caused horrible, chronic dry eye, which led to muscle spasms, headaches, etc

    In addition, i had constipation/bloating, racing heart rate/palpitations and I/C (painful, bleeding bladder).

    For me, thank GOD, researching this on the Internet the last 13 years helped me find clues to help manage it so that with diet/supplements I was able to lead a great life despite this awful condition.

  67. I was diagnosed with MCAS/MCAD this year, though I’ve been dealing with the symptoms for 15+ years. In 2009 it got much worse and became Chronic Fatigue Syndrome and I had to quit my job in 2012. When I was diagnosed with POTS, and could undertake lifestyle changes to manage that, I gained a little more control over my life, but I haven’t worked fulltime in almost four years due to the symptoms. Taking Zantac and Zyrtec twice daily has been life-changing for me. It even stops the POTS! When I still flared on those meds this Fall when pollen counts soared, my doctor added in a luteolin/quercetin med called NeuroProtek and the brain fog and fatigue have reduced considerably again. Plus he treated me for SIBO, a gut dysbiosis. Thank you for bringing awareness to this diagnosis Chris. I love your site and continue to benefit from reading it with every email you send.

    FYI, my doctor thinks that a systemic bartonella infection is what set off MCAS in me (I’m a veterinarian, and intracellular Bart is hard to diagnose and hides from the immune system well like Lyme), and we are about to start treatment for that, so don’t forget those pesky vector-born diseases (Lyme, Bartonella, Babesia, etc) as possible underlying factors for some people at high risk of exposure. I also have a reactivated EBV infection with a persistently elevated IgM for the HH4 virus, so antivirals are on the list to do as well. But addressing histamine and mast cells has been life-changing for me. I am no longer stuck lateral in my bed with dizziness and inability to communicate due to concentration and memory issues. and the awful tachycardia when I stand. It’s so nice to have that reduced.

    • Thank you for posting this! I also have POTS (diagnosed at the Mayo Clinic) and it is fairly well controlled with a beta blocker. The memory fog is THE WORST. I have been convinced I have early Alzheimers at times. What is your exact regimen? I have been on Zyrtec for years and just recently switched to Singular. I can tell a huge difference. My sinus issues have lead me to THREE years of seeking out why. I have had two surgeries and a quality of life that has been horrid as far as my health goes. Do you also follow a certain diet like low histamine?? Any advice would be great! Thanks!

  68. I was just recently diagnosed with AITD and MCAD. I was struggling to lose my last 20 lbs. I eat clean, work-out 4-5 days/ week 2x with a trainer and still cant get this weight off. That is what brought me to an endocrinologist. Very frustrating. Still cant put my finger on this low level inflammation going on. Do experience some water retention especially in hands and have been more fatigued mostly in the AM. Had food sensitivity tests done and follow that religiously. Take Vitamin C, D, probiotics, Glutamine, Fish oil, Fiber supplement. Gluten and dairy free.
    All along I was thinking it is my thyroid but now thinking it is MCAD causing the symptoms. Had a lot of stress going on with loss of my mom and husband sick but things are improving .
    Any suggestions?

    • Exercise in general can cause mast cell degranulation. If you feel worse after exercising, even if you don’t exercise that hard (low/moderate), it could be MCAD. Water retention is common with MCAD, but honestly, the symptoms are incredibly vast and diverse for MCAD. Fish oil and probiotics are a catch-22 for MCAD, and probably for a lot of people who don’t have MCAD.

  69. Dr. Theoharides at Tufts University is also working on the issue of mast cell activation. His work has focused on the ability of quercetin and luteolin to block many of the compounds released by mast cells. His lab designed a product called Neuroprotek which aims to make the flavonoids more easily absorbed. His research is very interesting and can all be found on his website, mastcellmaster. His efforts are primarily aimed at autism, as mast cell activation appears to play a role, but the work is applicable in terms of understanding the physiology. Maybe this will help someone here…

  70. Good info but this tries to give too many simple answers to an extremely complicated problem that no one understands properly as yet. It is the FM problem – glib, easy responses to issues that are multifactorial and often cause multiple pathologies, the root of which is never clear because so many moving parts are involved.

  71. Very informative article. I want to learn more! Is there any connection to having limited Tyramine breakdown? The symptoms are the same and the low Tyramine diet is low histamine also. Also I have taken an antihistamine everyday for 35 years for nasal allergy symptoms and have many food sensitivities. I would love to get to the source of these very limiting symptoms.

  72. Sounds possible that this is what is going on with my husband. After several years of intense stress in an extremely demanding job, he started responding to cold temperatures with extreme itching, hives and burning skin. He also cannot tolerate even a drop of alcohol without being in detox for a week. Other symptoms are chest pain, tiredness and dizziness. We’ve seen a functional doctor and he ran a lot of tests and everything came back normal 🙁 He has not gone though any kind of genetic, heavy metal or microbial testing. What is the best way to test for this disorder?

    • Did your husband get his blood tested for cryoglobuline? It may be positive and may be the reason for itching and hives when the temperature drops.

  73. This diagnosis appears to be the key to solving Asthma problems. Most of the sutritients recommended do work for Asthma.

    I have Chronic Lyme (30+ Years) and the MTHFR A1298c mutation. The key issue is fighting the inflammation that is causing brain swelling and severe 24/7 headaches. Could the brain inflammation be MCAD? What is the best approach to control MCAD for people with these types of conditions?

    Thank you for this new insight into our medical conditions. Anita

  74. Thank you for raising awareness of this, we need to get MCAS onto the radar of more doctors and health professionals. In the UK there are only a handful of doctors who treat MCAS, i.e. A dermatologist, urologist ( some interstitial cystitis is mcas related), gastro, few allergists or immunologists…). But knowing that mcas is now thought to be quite common and linked to IBS, anxiety, depression, IC, etc etc this is so important.
    As in some areas holistic professionals are rare, and not everyone can afford it,?information on what tests would be very useful…i.e. How do U test fir metals?

    Also I know dysbyosis can lead to overproduction of histamine but how does it relate to overactive mast cells? Thanks!

    • Hello Anastasia,

      Would you please point me in the direction of some of the doctors in the UK? I am trying to get a diagnosis of the dozens of symptoms I have going on, and my GP is kindly condescending and not helpful.

      Thank you.

      • If you join the Mast cell activation uk group on facebook they have s great list in their files…plus is great group!

  75. Hi Chris,
    I have been searching for better ways to treat MCAD. I was diagnosed with Crohn’s disease in my early 20s but have suspected it was more allergic. About 10 years ago I had “an episode” that has been diagnosed as heart problems, anxiety, allergies, brucellosis exposure, asthma, and many other things. I finally found an allergist willing to think outside the box who mentioned MCAD. She started me on many antihistamines and a drinkable mast cell inhibitor called Cromolyn, and I have found some relief, most particularly in my Crohn’s symptoms and anaphylactic responses. Unfortunately, I also get to deal with extreme fatigue among other side effects of so many antihistamines. I would love any and all information you have on this topic. My goal is to get off all of the medication and treat this naturally if possible.

    • I was excited to learn about cromolyn liquid, so I quiclkly logged-on to my prescription coverage plan’s website to see how much it costs. Too rich for my pockets! Depending on brand or generic, it is between $2,600 – $3,360 for a 90 day supply, and it’s all out of pocket. So sad!

      • Look into Enteragam. I am finding it helpful and am replacing the expensive Cromolyn with it (and it tastes much better!!). Foundation Care along with my insurance reduces the cost of Enteragam to $25/month!! Cromolyn was $145/month for me, but still expensive along with my other supplements, and thyroid hormone (which is costing me a arm and a leg!!). I have SIBO, hypothroid and a histamine issue.

  76. Wonderful to read this article! The more exposure this “rare” disease gets the more people will be helped.
    I’m one of the “lucky” who has a diagnosis of Mast Cell Activation Syndrome and have received a great deal of help from specific foods, supplements, probiotics and avoiding triggers. I also take one medication that is actually a mast cell stabilizer in addition to being an antihistamine. As Chris mentions there can be side effects, long term issues, etc. But it improved my quality of life tremendously.
    Be prepared to be your best advocate. Learn all you can about the disease if you seriously think you have it because your doctor (I have seen regular and functional) more than likely will not know it exists.

  77. I was diagnosed with Mast Cell Activation Syndrome four years ago. My symptoms have improved since beginning treatment with antihistamines, mast cell stabilizers (oral Cromolyn and Ketotifen) and following a low histamine diet. Keeping a journal of foods and symptoms helps to identify triggers (odors/food/heat) and strategies to reduce mast cell degranulation. Mast cell disorder research is advancing and the Mastocytosis Society helps keep us up to date.

  78. I have Histamine Intolerance for sure. I assumed that it was basically the same thing as the Mast Cell Activation Disorder. Either way, I’m generally doing better, it presents on my chest. BUT, I also have been suffering with “seasonal allergies” all year long for the past year and a half. I defiantly think that the two presentations are connected. How to I reverse the condition? Just diet and nutrients aren’t doing it.

  79. I do know for a fact that if you get the trash foods out of your system and feed your body healthy foods and exercise at least 30 minutes EVERY day, you will see a huge improvement in how your body feels. This includes allergies, digestion problems, achy joints and arthritis. Eat three meals a day, small portions, lots of color, you can still have your dark chocolate in small portions, nuts and fruit become your go to snacks, drink plenty of water. Tea and coffee are ok too. I switched to decaf coffee over two years ago and have never gone back. The caffiene is out of my system and I feel much better than I used to. I know that everybody cannot do all this, but if I can I believe almost anybody can. I quit smoking 17 years ago and I feel like I never smoked at all. This lifestyle is different for me, it is a constant daily challenge and I face it every day knowing the changes I am making show me the results I have been looking for.

    • exercise can actually be a problem for people with mast cell and histamine problems. Unless you mean gentle yoga or walking. Probably best to just speak for yourself

        • Me too. I have always gotten “heat stroke”, and migraines from heat. Now I know why. Too vigorous of exercise makes me feel ill and depleted. Also, I have to be careful on beach vacations. I will feel worse on vacation because of the heat and because of more alcohol :(. Oh the alcohol. It was so sad to say goodbye to wine!!

    • You are an inspiration, I know I’m not willing to do all the changes you made at once, but I have made a list of what you did, and it’s all so realistic and simple (implementing will be not so simple 😉 ). Thank you for the down to earth reminder to take charge of health/lifestyle!

  80. Forgot to say that I frequently get itchy all over and have to take an anti histamine pill which quietens it somewhat but I will now try some natural remedies.
    Very interesting article the first time I have read about this condition.

  81. I have Hashimotos, celiac D, Candida overgrowth, and also have problems with contact dermatitis at the moment only occasionally, I thought it was hormone based but suppose it could be MCAD? My brother has lung fungus problems and asthma.

  82. I think I have histamine intolerance too, it started last year as a lumpy scratchy feeling in my throat which I was attributing to my hot yoga practice ,after a while I started to manifest dermatographism that is on and off depends on whatever.
    Sometimes I think is associated with stress sometimes can be food ,anyways its a mystery for me and am trying to understand it and to try to fix it but its a a tuff thing, the good side is that I am able to live with the symptoms once I understood that it’s not a big issue but it’s unpleasant and I hope at one point to be able to wake up one day without this condition.
    Also I think it may have been triggered by the flu vaccine that I took for the first time 2 years ago.

  83. This is interesting information. I have been diagnosed with dermatographia since I was ~13. I’ve been told it means the mast cells in my skin are “leaky” and will release their contents with just a light touch. Now I begin to think this is a systemic issue as I have migraines and digestive stress as well. Is there a test for this or just trial of diet changes and supplements?
    Thanks.

    • Low histamine chef has a whole post about testing if you Google. But they aren’t very accurate. A lot us diet supplement and med trials. Leaky cells is pretty much mcas!

  84. My daughter has histamime intolerance and MCAD. I have yet to find a stool test that accurately detects parasites. I’ve done Metametrics GI Effects on her several times and DRG lab stool test. Is there a different one you recommend Chris? Thank you!!

  85. I had histamine intolerance fairly severely for about two years. I couldn’t eat at a restaurant without flushing badly and had to limit my diet at home. I’m 42 years old, homozygous MTHFR C677T, and have some hetereozygous DAO mutations. I’ve been taking methylfolate/B vitamins along with trace minerals, vitamin c, etc., but the SINGLE thing that cured my histamine intolerance was avoidance of all cultured milk products, which contain the L. Casei strain of probiotic, (had to give up the morning yogurt!) plus an introduction of three probiotic/biophage products:

    1) Arthur Andrew Medical “Floraphage”
    2) Seeking Health “Bifido”
    3) Allergy Research Group “Lactobacillus plantarum / rhamnosus / salivarius”

    I have no intention of promoting these companies; only to tell fellow sufferers what worked for me because I know how awful it is to live with histamine intolerance. I took the three products every morning on an empty stomach before breakfast. Within two weeks, I saw a major improvement; and within a month or two I was back to eating anything and everything – red wine, parmesan, hurray!

  86. Very good article Chris. I have learned so much from you you’ll never know, thanks so much. I’m dealing with histamine issues. Working with a functional medicine doctor. Just got test results today, zonulin perfect, Dao optimum but histamine is high. So not sure what is going on at this point, but will see at my next appointment.

  87. So what probiotic foods can you eat? Most all low histamine food lists I have seen show most fermented foods as being high in histamine. And from personel experience I have had trouble with some fermented foods depending on my histamine and stress level.

    • In my experience, yes. I posted above that I was diagnosed with MCAD and then went to a naturopath who diagnosed SIBO and treated that with high-dose garlic (and, I’m remembering now, something else. I think it was neem maybe.) I have had very few symptoms for the last two years.

    • Also I have taken antihistamines everyday for the last 35 years for nasal allergy symptoms and I have many food sensitivities, that result in migraines.

  88. I believe the major source of inflammation is aluminum. Check out the periodic table. Unlike every other heavy metals, which the body recognizes and strives to eliminate, aluminum is right in the middle of loads of essential minerals. Until about 80 years ago no one in the whole of evolutionary history was exposed to free aluminum. Now it is everywhere, it is highly reactive, and the body has no idea what it is or what to do with it. Unless we address our daily exposure I believe all kinds of inflammatory diseases will continue to increase. Check out the work of Dr. Christopher Exley.

  89. Chris, there is a great book by Dr. Lawrence B. Afrin, a well known hematologist in the field of mast cell diseases called: “Never Bet Against Occam, Mast Cell Activation Disease and The Modern Epidemics of Chronic Ilness and Medical Complexity ” 2016. I just finished reading it and it has really helped my understanding of this difficult to diagnose disease. I have suffered from this since I was young, the doctors. It knowing what it was. My son also has it and we have the genetics.

  90. I have genes that prevent methylation as well as variants in Dao genes. I cannot get rid of cellular waste effectively or deal with the heavy metals. Have Hashimoto’s and chronic fatigue, recurrent SIBO, leaky gut, many different food sensitivities including all grains, dairy, legumes, sugar, eggs, and most nuts. Am working now to try support methylation. Been a battle for many years. Am 69. Suspect MCAD is an issue as well. Haven’t found an answer yet but am constantly working on it. Feel fairly good ne day and sleep well then terrible the next with no sleep. Nose runs most of time and chronic sinus drainage that itches my throat.

    • Ah Judy, I felt like I was reading about myself! That’s great that you continue to work on it. That’s what it takes to battle this disease. Even with a diagnosis of MCAS, the burden of finding what helps us is on us. And the interesting thing is that sometimes what helps one doesn’t help another. Best of luck on your journey.

    • Wow you describing me. What foods do you eat then, specifically the nuts that you can tolerate? I am now doing my best to just eat foods that grow, no longer pre-packaged foods. But nuts are something I love and yet can cause kidney stones and Diverticulitis issues for me. I had my kids food sensitive tested a few years back called an Igf test.. they came back with issues with all gluten, eggs, dairy, shrimp and honey. I know I am similar to what they tested. My nose is always post nasal drip too no matter what time of year it is.

  91. This may be the answer to my issues. When not following a paleo diet, I struggle terribly with debilitating allergy attacks, so I’ve put together the link to my digestion and gut. How do I find out for sure whether this is the root cause? I can’t imagine having this conversation with my MD, and when I asked a gastroenterologist about candida, she looked at me like I was crazy. Thanks!

  92. I have gotten into a habit of taking anti-histamines daily because I feel less reactive to things, less itchy and puffy eyes and better on a whole.
    I react severely to insect bites which often tend to reappear and swell as if I have just been bitten on an annual basis
    I couldn’t believe your article because I was beginning to wonder if I just was imagining that I felt better but perhaps there is a deeper reason why.
    I would be really grateful to find out if I need to run tests …

  93. So is this why i all of a sudden have chronic hives? The hives coincidentally started the same time my thyroid levels dropped and my blood work showed hypothyroid and high antibodies? I tried gluten free/paleo for years and it doesn’t effect the hives at all. I go through cycles of where the hives get really bad and then go away for a while. Skin test on allergens all came back neg. So right now im getting the Zolair shot and taking zyrtec every day . The combo of the 2 is def helping. I do remember my allergist talking about mast cells when describing to me how the shot works. Would trying an anti histamine diet possibly assist too? Thanks!

    • I had really bad hives for years until I discovered that it was when I ate sweet things, especially fruit, so maybe a fructose problem? Alcohol also seems to trigger the hives but not so bad. I steer clear of anything with fructose I can tolerate a very small amount of ordinary sugar, so maybe the sucrose cancels it out to some extent, but mainly I eat nothing sweet at all, and so no hives. If I cheat the next day the hives are back!

  94. I got anti histamine eye drops, anti histamine pills, anti histamine nose drops and still it felt like it was going haywire, especially just before the period it is going berserk. But I have to say I went Paleo low carb a couple of months ago and my blood results came back perfect (I saw some huge improvements), my hair is in good condition, even after all the abuse, my menstruation has decreased (menorrhagia) and lost after so many fruitless attempts 24 pounds in 3 months! I hope my other issues will improve over time as well if I also keep an eye on the histamine levels in food.

    Thanks for the article!

  95. Copper is essential for the formation of the DAO enzyme.

    Many avoid it because of the fear of its toxicity.

    When I was copper deficient, I became intolerant of many foods, even beyond high histamine ones.

    • You can have high copper levels and low useful copper. There are different forms of copper you can purchase. Copper sebacate is more likely to increase useful copper. Personally, I was diagnosed has having low useful copper. I tried copper gluconate and it made me feel poorly. However, the sebacate form was helpful.

      I have since found out that you need a protein called ceruloplasmin to transport and use the copper. To make cerulopalsmin, you need boron. However, you lose your boron if you have been exposed to aluminum. I think my problem was a lack of boron, because I had also been diagnosed as having too much aluminum in my body. Boron / borax supplementation helped my health. I’ve been using Fiji and Volvic water to remove the aluminum. I can’t say that water has made a dramatic difference, but some subtle improvements in my health have occured.

      • Thanks for the info, Polly,

        I’ve tried both the copper sebacate and copper glycinate.
        Both seem effective.

        Interesting about boron.

        Metals can displace each other and cause deficiencies. It turns out that I have iron overload, which can cause copper deficiency.

        Copper enzymes and proteins, like ceruloplasmin, regulate
        iron metabolism. I’m hoping that dietary practices, etc., along with copper supplementation will mitigate the iron overload.

        Meanwhile, the high histamine symptoms have resolved.

  96. This is very interesting. I have Hashimoto’s disease( which I am slowly healing naturally), high mold reactions, and high Candida Antibodies that are extremely difficult to get rid of. My body also tends to create abnormal skin celled moles, which I get scraped off often.I wonder if this all as something to do with MCAD?

  97. Could histamine be a problem if there is a lack of the typical respiratory symptoms? I never get cold like symptoms such as runny nose, etc., but I get seemingly random and sometimes intense itches in arms and other places that are pinpoint localized. I also get frequent migraines that I’ve never been able to identify triggers for.

  98. What about the relationship between folate deficiency and high histamine? Or insufficient methylation altogether, which can cause the body to have a higher toxic burden?

    And, do you know of a DAO product that doesn’t contain rice or corn (which I’m allergic to…)

    Thanks!

    • +1 for that idea! I, too, have looked for a DAO supplement free of rice or corn without success.

      My functional MD inquired with a compounding pharmacy and they weren’t able to find an unadulterated source either. Apparently it is considered a drug in the EU, so we had hoped the enzyme might be available as a raw ingredient.

      Chris Kresser: product opportunity!

  99. As someone with diagnosed MCAD, I was wondering if you would talk about under the “Root Causes” section about MCAD’s relation to connective tissue disorders like Ehlers-Danlos Syndrome. Research suggests that MCAD can be caused by/secondary to Ehlers-Danlos Syndrome and faulty collagen. I’d love to hear your take on this as well. MCAD-EDS-POTS is a disease cluster that it seems little is known about, and I tend to see articles like this where the causes of MCAD are talked about as something that can be addressed and healed, but I become disappointed when I realize that my particular mast cell activation issues may not be caused by heavy metal, mold, or gut dysbiosis but because of a genetic condition.

  100. Hi Chris, At last, someone is talking about this debilitating problem.
    I’m 70, and have battled with Hashimotos & other auto immune issues all my life, and I’ve baffled, AND battled a LOT of doctors over the years! Now, thankfully, there are a few Integrative medical professionals who are thinking beyond the square and realizing that it is NOT all in our heads. I’ve tried everything to get rid of the inflammatory side of the disease, with very little success. I came across an article on histamine, as I was trying to find out why I can’t eat so many foods,…gluten, dairy, sugar, salicylates, and anything yellow, orange, red or purple. These foods produce violent leg cramps, and sometimes, hand cramps, numbness in one side of the face, dry eye and all sorts of nerve tingling and other weird problems. I’ve tried every recommendation to fix my gut, include. bone broth by the bucket, probiotics. etc. etc.
    I NOW read that one cannot have any of the lactobacillus varieties of probiotics with histamine intolerance, and various other supplements that I take are no no’s too.
    You have to look at everything, for instance ginger and tumeric are supposed to be helpful, but if I had either of those, I would be up all night, screaming with leg pain.
    Yesterday I had a $400 blood test, to check on methylation and histamine issues. Can’t wait for the answers!
    I suggest that once autoimmunity is activated, the body tries to compensate in any way it can, which throws the whole system out of wack, and it begins to over produce or under produce all sorts of mechanisms. As the years roll on, we suffer more and more from the breakdown. Hence, my body now reacts in some way to every food I put in my mouth because it sees it as a ‘foreigner’ and sends in a whole army to protect it. I’d like to know how many people who have histamine intolerance, ALSO have auto immune diseases, perhaps 100%? Also, what is the connection between histamine intolerance/Mast Cell issues and Methylation?
    Hope this helps someone!

  101. Chris and team, thank you for this article. I was wondering if you could recommend a functional medicine doctor in the southern California area …preferably the Torrance/Redondo/Hermosa/Manhattan Beach areas. (I see the practitioners in your clinic are located in Northern California.) I have Crohn’s (and other autoimmune conditions) which I have semi-successfully managed with Paleo and AIP. However, I’ve now developed some sort of angioedema with itching (on my face and eyes, which is especially concerning), and I would like to seek professional help for proper testing and treatment. I think it may be histamine intolerance (and may be related to mold and/or mercury exposure). I read that Chris is originally from Manhattan Beach and thought he might be able to recommend a good FMD down here. Any recommendations would be much appreciated. Thank you in advance!

  102. Please include Copper as an essential component of the DAO enzyme.

    Copper deficiency may be part of the reason there is so much histamine intolerance these days.

  103. Yes, I have histamine intolerance. What I noticed at the age of 67 that Hormone Replacement therapy aggravates it. I was off HRT for 5 years and when I went back on it for my bones the migraines started back up. Also being on the computer with eye strain also triggers the response. Good article. Do you know anyone that has been cured of this condition? I would really like to know. I would like to eat fermented foods to heal my gut, but I can’t because it creates very bad high pitched tinnitis. I tried to take DAO but it wasn’t a good long term solution. Is there a Autoimmune connection? As I have Graves disease also.

  104. Great article…. I have a question though. Can taking histamine through pill form, such as hydroxyzine or benadryl, cause the same reaction in your body if your intolerant or even in a person who is not intolerant? Thank you!

    • Those drugs are ANTI-histamines. They work by blocking certain receptors that histamine binds to, thus temporarily stopping histamine based symptoms (itchiness, runny nose, etc). They don’t break down the histamine however, so if you have a build up of histamine in your body, it will likely still be high (but maybe not so bad) when the drugs wear off.

  105. Good information, Chris! I have Chronic Lyme disease in which I am being treated naturally. This sounds like it could be a problem that Lyme disease would help to occur. What are your thoughts?

      • Isn’t MCAD diagnosed by chronically high tryptase levels? MCAD was ruled out in my case because my tryptase levels routinely tested low normal. I think information about tryptase and other clinical and symptom indicators need to be included in this article surrounding the discussion of MCAD. If someone gets this diagnosis, they are going to have a hard time finding experienced practitioners to help them manage the condition when generic information like this does not work well enough.

        • Good point. Just finished with a hematologist. Tryptase was high, then low. The urine test was negative. And now my bone marrow biopsy came back normal. I think there isn’t even an agreement on the definition within the medical community. My allergist was the one who finally suggested the diagnosis, but no one knows what to do. I feel like I’m going crazy and the reactions just keep happening. I walk too much, I break out in hives. I get stressed, my face turns beet red, itchy and puffy. I spend more than 10 min in the sun, I get welts all over my arms, neck, chest and calves (even though they weren’t exposed to the sun). I can’t tolerate ginger, fish oil, corn (used in many supplements). Didn’t mean to rant but yesterday’s dr visit made me feel like I will never feel better again.

          • Restesting is a very good idea. Dr. Afrin recommends 3 rounds of testing. I think only 1 bone marrow biopsy and aspiration, but even then, bone marrow biopsies and aspirations miss MCAD 1 in every 6 times. This is because mast cells tend to aggregate in clumps, sometimes that is. So a sample may not show anything. The mediators tested in the urine and blood have a super short half life, so its difficult to get an accurate reading.

      • Given that MCAD is a disease of genetically altered mast cells and not an autoimmune disease…would the low histamine version of AIP still be a useful for those of us battling with this disease? Thanks!

    • I have chronic Lyme as well–which has welcomed SIBO and guy dybiosis. But yet I struggle to find relief, answers…. Do others with Lyme have MCAD? What are symptoms that would indicate this is something to look into?….. Do conventional doctors test for that then too?

    • I have Lyme disease with babesia infection and I have histamine intolerance issues along with mcs (multiple chemical sensitivities). A low histamine diet has been beneficial along with “pearls” histamine degrading probiotics. Sometimes I go days where my nose runs and inside of ears itch or roof of mouth also chest pressure and head and and neck swell up and ears are full and pop. Also severe brain fog and dizziness. I have methylation issues too. I take quercetin and vit c and organic sulphur. I will sauté several onions and eat them to help stop the nose from running. Dao enzymes are also my first defense. My blood pressure drops and I get the pass out feeling. I eat Celtic sea salt when this happens.

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