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Could Your Histamine Intolerance Really Be Mast Cell Activation Disorder?


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Reviewed by Laura Beth Schoenfeld, RD, MPH

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
Do you have trouble with histamine? Mast cell activation syndrome can contribute to the release of histamine. istock.com/Ugreen

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 (7), though related individuals may present with very different symptoms. (8)

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

MCAD is estimated to be more prevalent (9) 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 (10) and diagnostic criteria weren’t proposed until 2010. (11)

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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)

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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.

Nutritional Deficiencies: Some nutrient deficiencies can trigger MCAD. Vitamin D is required to maintain the stability of mast cells, and a deficiency has been shown to activate them. (18) Zinc is involved in regulating mast-cell function, and there may be a link between magnesium deficiency and inflammation. (19, 20)

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 (21) and vitamin C (22), have been shown to stabilize mast cells. A number of herbs and spices, like holy basil (23), peppermint (24), ginger (25), thyme (26), and turmeric (27) also have this effect. I have also seen good results with supplemental forms of quercetin (28), bromelain, nigella sativa (29), nettle (30), and butterbur. (31)
  • Reducing stress: Corticotropin hormone, released in response to physical or psychological stress, destabilizes mast cells and causes them to release their mediators. (32)
  • Entraining circadian rhythms: Mast cell activity closely mirrors circadian rhythms (33), 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.
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Join the conversation

  1. I wake up most mornings with histamine intolerance symptoms. I follow a low histamine diet and do not get symptoms after dinner but certainly in the morning. Any clue as to why?

  2. Hi, I know this thread is quite old, but I would like to ask those of you who have mentioned PEA for MCAD for some info, I don’t seem able to reply to your posts….Anyway, please can you say what PEA you used and how much you took and also how long before you noticed any improvements in your Mast cell symptoms. I would be so grateful.

  3. Good article. It is important to know that a lot of the recommendations that are given though can cause problems in themselves with MCAS. And what triggers a response is unique to each person.

    For instance: turmeric is high in histamine and many react to it. However, curcurmin, the key ingredient in turmeric often doesn’t. Vitamin C, DAO, and other supplements are essential, but if the vitamin C is derived from corn it can cause problems with some. Same thing with the fillers in other supplements including quercetin, which can be as effective as cromolyn sodium, but others can’t tolerate it.

    Also, many probiotic supplements produce histamine and cause MCAS flares and the natural sources — kombucha, sauerkraut, and anything else that is fermented, they make many of us very sick.

    Many of us who histamine intolerance and MCAS try GAPS and other diets that rely on bone broths and fermented foods and feel worse than we’ve ever felt in our lives.

    So while the information in this article is very good surface information, it’s still incomplete. Know that with MCAS/histamine intolerance, every single one of us is unique and every single day is unique because it also matters what our histamine load is on that particular day from foods, stress, immune stress, inflammation, and serum DAO levels.

    It doesn’t help that testing is very unreliable. False negatives abound. My diagnosis arose simply from my dermatographia and my positive response to cromolyn sodium.

  4. Appreciate this article! When I read it the first time it was published, I was soooo sick, looking for answers. It was the first time I heard mast cell disorder- and it led me to find out I have extra tryptase genes. Hereditary alpha tryptasemia. Trying to deal with it as naturally as possible- thank you so much for your wonderful help.

  5. 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.

  6. 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.

  7. 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/

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

  9. 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.

  10. 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.

  11. 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!

    • From one mom to another, I’d highly recommend a functional doctor. An allopathic doctor will not likely help you at all.

  12. 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!

  13. 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 ?

  14. 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.

      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.

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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!!!