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)
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.
Better supplementation. Fewer supplements.
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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!
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…
Thanx Kristina – how did u treat mcas ?
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.
If you don’t mind sharing, who is the hypnotherapist?
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).
Histamine is a notorious migraine trigger.
Agreed. Histamine can stimulate headaches in “healthy” people who don’t have histamine issues or MCAD.
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?
I’m curious about you and other people’s experience with cilantro/coriander leaves. I was eating them every day (thought it would help with mercury) and haven’t been brave enough to try again since I stopped cold. ANYONE ELSE???
Stress is a contributing factor to HI. Psychological, environmental….you name it. Manage yer stress and you’ll be healing your MCAD.
Fish, especially canned fish is one of the absolute worst things a histamine sensitive individual could consume. Study the phenomena of putrescence in fish.
Google, “fish putrescence and histamine intolerance”.
http://www.r-biopharm.com/news/news-en/histamine-intolerance-fish
what do you think of fresh fish? We catch Sockeye salmon here in Wa state, and fresh water trout…. would they be a high histamine food?
It depends if you have histamine intolerance or MCAD. If you have SNPs in DAO or HNMT, you can probably offset it with supplements and diet and feel pretty good. If you’ve got MCAD, it’s complicated and very diverse in terms of symptoms, treatment, and how long it can take to feel better. If you want to learn a little more about diagnosing and treatment options, you can check out an article I wrote. https://jakejonesnutrition.com/blog/histamine-and-mast-cell-activation-disorder-your-weird-symptoms-finally-answered
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!!
Why not just assume you/she has HI and adjust your diet and lifestyle accordingly until you find that doc. Then you can report to the doc what effect the adjustments had on yer symptoms.
Dr. Hosler at U of M allergy can help.
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.
There is evidence that (excess) estrogen promotes histamine release.
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.
Stress is a major player in histamine release. Scour your life for stressors. Whether they’re environmental or pyschological. Take remedial action.
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.
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
Wow Eric. That was great and thorough and I’m sure helped so many others. Thank you for your thoughtful comment 🙂
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
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/
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.
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!
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!
NO. You are done, unless you get a real TIGER LAWYER and sue their pants down.
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.
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?
Hi Anastasia
Do you have a name for the urologist in the UK?
Kymber I use Dr. Albert Snow for healing IC. We consult by phone and email. Here is his website. https://gicure.com
Does he deal with MCAS? what type of treatment protocol?
Check out Low Histamine Chef
May I suggest you look into, “oxalic acid” and it’s presence in the foods you are consuming.
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.
There are some great Facebook groups you can join to see what other’s experiences are with this rare condition.
please tell me witch facebook groups
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!
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.
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…
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.
Wow you say glib, easy simple. We say compassionate, clear, helpful.
IMHO and I’m not a MD,
The phenomena/symptoms can be approached with actionable ideas that can constructively begin to address possible contributing factors and influence incremental healing.
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.