Podcast: Mast Cell Activation Syndrome With Dr Bruce Hoffman

I was recently interviewed for The Dr. Hedberg Show, where we spoke about mast cell activation syndrome and how exactly the condition is diagnosed. In this podcast, we reviewed the similarities that exist among certain conditions (fatigue, brain fog, and GERD to name a few) and how they may be indicative of mast cell activation syndrome.

Natural Treatments for Mast Cell Activation Syndrome

I have recently returned from a most stimulating conference/think tank with Dr. Afrin and 30 other leading clinicians on Mast Cell Activation Syndrome (MCAS) at Commonweal—a cancer retreat centre in northern California.

MCAS is a type of mast cell activation disorder (MCAD) characterised by an abnormal activation of mast cells resulting in chronic multisystem polymorbidity of a general inflammatory nature, with or without an allergic nature. Mast cells are white blood cells that are concentrated at the entrances to body tissues (ears, ears, nose throat, skin, genitalia, rectum), and when activated, they release over 200 signalling chemicals (e.g. histamine, prostaglandins, leukotrienes, cytokines and chemokines). These chemical mediators trigger inflammation in response to the invasion of foreign toxins, infections or chemicals, resulting in a range of chronic symptoms. With MCAS, this function becomes upregulated and chronic, occurring at inappropriate times in response to substances that are not necessary a threat. This can lead to widespread symptoms in many different body organs and systems.

Mast cells are located throughout your body in many different tissues, primarily including dermatological, gastrointestinal, neurological and respiratory tissues.  While we need mast cells to protect us from threats, they become a problem when they are overactive and hyper-responsive and will not ‘turn off’. Dr. Afrin, a leading mast cell researcher, believes that between 15 and 20% of the North American population may be affected  by MCAS. The symptoms of MCAS vary greatly. As a result, many people spend years, even decades, in search of a correct diagnosis, visiting many different subspecialists. What is more frustrating for patients is that many doctors are not familiar with the multiple ways in which MCAS may manifest.

MCAS is often found in individuals with hypermobility syndromes (Ehlers–Danlos syndrome), postural orthostatic hypotension (POTS) as well as chronic inflammatory response syndrome (CIRS) and tick-borne illnesses (Lyme disease and co-infections).

The most common symptoms of MCAS include:

  1. Feeling as though you have been sick forever
  2. Trouble with allergies and asthma
  3. Overreaction to insect bites, bee stings and chemical intolerances
  4. Facial and chest flushing
  5. Skin rashes that come and go, including hives and angioedema
  6. Itchiness and a burning feeling
  7. Brain fog and headaches
  8. Poor wound healing and easy bruising
  9. Waxing and waning of symptoms

The condition may be mild in some people and only exacerbate in response to a significant life stressor, which may be either physical or psychological in nature (divorce, bankruptcy, loss of job, travel, infection, death of a loved one, exposure to novel infections, occupying a water damaged building, exposure to cold or heat). In others, symptoms may develop from a young age and slowly become worse over time. People with MCAS are likely to experience a few of the most common symptoms. Because mast cells are located throughout the body, symptoms can affect the eyes, nose, ears, throat, skin, heart, blood, lungs, gastrointestinal tract and the nervous, endocrine and musculoskeletal systems.

The symptoms of MCAS are often confusing. For a long time, many people with MCAS have been told that their condition was psychosomatic or ‘in their head’. Fortunately, awareness of this frustrating and debilitating condition is spreading. Testing for MCAS is somewhat complex and confusing, as positive biomarkers may only be observed when a patient has a flare up. Incorrect collection of specimens may also lead to false negative testing. Many specimens need to be chilled with a refrigerated centrifuge, which is not available in every lab or doctors’ office.

If you need a comprehensive overview MCAS, I encourage you to read my article: Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant.

The most common drugs that are prescribed for treating MCAS include:

  • Histamine 1 blockers – Hydroxyzine (Atarax), Doxepin (Silenor), Cyproheptadine (Periactin), Loratadine (Claritin), Fexofenadine (Allegra), Diphenhydramine (Benadryl), Ketotifen (Zaditen) and Cetirizine (Zyrtec, Reactine).
  • Histamine 2 blockers – Famotidine (Pepcid, Pepcid AC), Cimetidine (Tagamet, Tagamet HB) and Ranitidine (Zantac). Famotidine is chosen most often because it has fewer drug interactions than Tagamet.
  • Mast Cell Stabilisers – Cromolyn (Cromolyn Sodium, Gastrocom—oral form, Nasalcrom—nasal spray, Opticrom—eye drops, and there is a nebulised form and a cream can be made from a bottle of Nasalcrom and Eucerin or DMSO cream), Ketotifen (both a mast cell stabiliser and an H1 blocker) and Hydroxyurea (Hydrea).
  • Mast Cell Inhibitors – Montelukast (Singulair), Zafirlukast (Accolate) and Zileuton (Zyflo). Pentosan (Elmiron) is used in the genitourinary tract for perineal pain and interstitial cystitis.
  • Antibody neutralisers – Omalizumab (Xolair).
  • Tyrosine Kinase Inhibitor – Imatinib (Gleevac).
  • Stimulants – Mixed salts amphetamine (Adderall XR), Methylphenidate (Ritalin) and Ephedrine (Epipen provides an acute rescue injection when experiencing an anaphylactic episode).
  • Non-steroidal anti-inflammatory (NSAIDS) – Helpful in some, a trigger in others.  Aspirin is the most commonly used NSAID. COX 2 selective NSAIDs—Celecoxib (Celebrex)—are also used.
  • Low-dose Naltrexone (LDN) – Used in a step-up dosing at night.
  • Cannabinoids – Drobaninol downregulates neurons and mast cells via inhibitory cell-surface cannabinoid receptors (not available in Canada). CBD is more helpful than THC.
  • Benzodiazepenes – Addresses the inhibitory mast cell benzodiazepine receptors. Use short-acting varieties. Lorazepam (Ativan) and Clonazepam (Klonopin, Rivotril) are best when used three times daily. Valium and Midazolam are also sometimes used.
  • Selective Serotonin Reuptake Inhibitors – may occasionally be of benefit.
  • IV Immune Globulin (IVIG) – this treatment is sometimes used in MCAS.

While your doctor may prescribe you some of these drugs to help your symptoms, there are also several natural treatment options. A benefit of using natural treatments for MCAS is that you can take these on your own and they do not require a prescription. However, because most patients with MCAS present differently, it is a good idea to implement these with the guidance of a functional medical doctor who is experienced in MCAS.

Although there is a good possibility that you will eventually find the right therapeutic combination of treatments that will help alleviate many of your symptoms, the fact is that there are no specific biomarkers that will predict which therapy will be the most effective for your specific manifestation of this condition. Trial and error with both drug- and non-drug-based options is often the name of the game.

Also, if you opt for natural treatments for MCAS, always be sure to disclose everything you are taking to your doctor so he or she has a clear idea of what is going on. It is also important that you make only one change at a time when attempting different combinations of treatment options.

Advantages of Using Natural Treatments for Mast Cell Activation Syndrome

There are many advantages of using natural treatments for MCAS, including:

  1. Lower cost
  2. No need for a prescription
  3. MCAS patients are often sensitive to pharmaceuticals, particularly the excipients (bulking agents, binders, fillers, dyes) within the products. Patients will have to work closely with their compounding pharmacists to help identify a list of offending ingredients in drug formulations. If a patient has a strange reaction to medications (e.g. insomnia while using a typically sedating antihistamine), it is likely a flare up of mast cells in the CNS causing the problem and not the drug itself.
  4. Some drugs block DAO—an enzyme in the gut that breaks down histamine
  5. Many patients prefer natural treatments
  6. May have benefits beyond mast cell stabilisation

Disadvantages of Using Natural Treatments for Mast Cell Activation Syndrome

  1. Supplements are bioactive compounds that may have unacceptable effects
  2. They may interfere with known medications
  3. They still have to be processed through the same liver detoxification enzymes as pharmaceuticals and thus may have unacceptable side effects
  4. Supplements may also contain excipients that produce unacceptable side effects

Many of my patients find that these natural treatments are sufficient when it comes to treating their MCAS. For others, these natural treatments allow them to reduce the number or amount of drugs they need. When it comes to natural treatments for MCAS, the most effective work in the following ways:

  1. Stabilising mast cells
  2. Increasing histamine breakdown
  3. Reducing histamine levels
  4. Stabilising the immune system and reducing inflammation

With that in mind, here are some of the best natural treatments for MCAS according to the mechanisms they influence. These recommendations were presented at the think tank by Dr. Brian Bouch, a leading integrative medical doctor from California.

1. Stabilising Mast Cells

One of the best things you can do for MCAS is add natural treatments that stabilise your mast cells. Such therapies work by inhibiting the inflammatory mediators mast cells release and can be broken down into three groups (A, B, and C) based on how helpful and potent they are.

The “A” Team:

  1. Quercetin  – 2000 mg daily, dose divided
  2. Green tea (EGCG, L-Theanine) – 2 to 3 cups daily. Supplement with 500 mg (175 mg of ECGC) twice daily
  3. Curcumin (Meriva is a common brand name) – 1 to 4 g daily, dose divided
  4. Chamomile tea (Apigenin, luteolin) – 1 to 2 cups before bed
  5. Resveratrol – 20 mg twice daily
  6. Diamine oxidase enzymes (DAO) – 2 capsules with each meal
  7. Vitamin C – may need a non-citrus source such as rose hips – 1 to 3 g daily

The “B” Team:

  1. Luteolin – 100 mg twice daily
  2. Ginkgo biloba – 500 mg daily
  3. Silymarin – 500-1000 mg daily, doses divided
  4. Shea oil – 3 capsules daily
  5. Ellagic acid – 500 mg daily
  6. Pycnogenol – 500 to 1000 mg daily
  7. Magnolia/Honokiol – 200 to 250 mg twice daily
  8. Parthenolide (Feverfew) – 200 to 400 mg twice daily

The “C” Team:

  1. Fiestin – 100 mg twice daily
  2. Rutin – 200 mg daily
  3. Genistein (isoflavone)
  4. Mangostin (often taken as a juice) – 500 to 1000 mg daily
  5. Xanthium (dihydrocodeine) – 6 to 9 capsules daily
  6. Isatis (indoline) – 6 to 9 capsules daily

Here is some further information about select products that are used most often

Quercetin

  • Found naturally in stinging nettle, grapefruits, onions, apples, black tea, leafy green vegetables and beans
  • Downregulates the enzyme that converts the protein histidine to histamine—histidine decarboxylase
  • Inhibits the release of histamine, prostaglandins and leukotrienes— three of the most common inflammatory mediators found in MCAS
  • Decreases the production and release of inflammatory cytokines—the inflammatory mediators responsible for many of the symptoms of inflammation related to MCAS
  • Often used as a primary therapy—has been shown to be more effective than the pharmaceutical Cromolyn
  • Treats allergies, contact dermatitis, photosensitivity and inflammation
  • The dihydrate form has the best bioavailability
  • Dr. Theoharides, a top mast cell researcher, has produced a product called NeuroProtek, which contains quercetin, luteolin and rutin. At least 8 capsules must be taken daily for maximum effect.

Green Tea – EGCG

  • EGCG is the most common polyphenol found in green tea
  • Inhibits calcium influx into mast cells, thus preventing their degranulation
  • Inhibits mast cell production of inflammatory mediator leukotriene C4.
  • Has other benefits: improves brain function, improves dental health, lowers risk for cardiovascular disease, combats skin aging
  • Lowers risk for Alzheimer’s disease, Parkinson’s disease and diabetes mellitus

Curcumin 

  • Widely used in popular supplements for lowering inflammation
  • Best found in phospholipid forms such as Meriva
  • Has antiallergic activity—inhibits the degranulation of mast cells in a dose-dependent manner
  • Inhibits inflammatory molecules—interleukin-4 and tumour necrosis factor -?
  • Widely used in cancer and joint inflammation

Resveratrol

  • Found in grapes, berries and peanuts
  • Reduces the expression of inflammatory markers IL-6 and IL-8
  • Inhibits IgE allergy reactions

Vitamin C

  • Research has shown that when Vitamin C levels fall in the blood, histamine levels increase exponentially. When Vitamin C is reintroduced, histamine levels fall exponentially
  • There is very little evidence in the literature, however, to support its use as a natural antihistamine
  • It is frequently combined with quercetin in supplements—a popular supplement is Natural D-Hist by Ortho Molecular Products. Take 2 three times per day for maximum effect
  • Be careful of citrus-based Vitamin C and be aware that high does can cause diarrhoea. It is best to take smaller amounts more frequently
  • Slow-release formulations may be better

Silymarin

  • Silymarin, an extract of milk thistle, which has been shown to attenuate mast cell-mediated anaphylaxis-like reactions
  • It also prevents the release of proinflammatory cytokines such as tumour necrosis factor, interleukin 6 and nuclear factor–kappa B.
  • Also known to have hepatoprotective, anti-carcinogenic and anti-inflammatory effects. Widely used to protect against drug- and chemo-induced liver toxicity

Other supplements that have been used in MCAS:

  • Lipoic acid
  • N-acetylcysteine
  • Ashwagandha – an Ayurvedic remedy known as an adaptogenic herb that modulates the body’s response to stress. Withaferin A is a compound found in ashwagandha that has been shown to prevent mast cells from releasing histamine and other inflammatory mediators
  • Vitamin D – usually best at higher doses. Need to test blood levels

Important Caveat:

Both quercetin and green tea extracts may inhibit the COMT enzyme. If you have a COMT ++ enzyme (slow function) on your 23andme, be careful when using these two supplements. The COMT gene determines your ability to process catechols, oestrogen and the major neurotransmitters adrenaline, noradrenaline and dopamine. Your anxiety, insomnia and pain may increase due to further slowing down of the excretion of these excitatory chemicals plus the excitatory catechols, substances found in green and black tea, coffee, chocolate, green coffee-bean extracts and quercetin.

Other things to consider in MCAS patients:

  1. Ensure you have sufficient magnesium levels, as a deficiency has been shown to induce the emergence of mast cells, particularly in the liver. Magnesium also has hundreds of other important functions in a healthy body.
  2. Zinc is another mineral you should ensure you’re getting enough of because it is important in appropriate mast cell signalling.
  3. Stress reduction is also important in stabilising mast cells. When you’re stressed, your body releases corticotropin-releasing hormone (CRH), which is associated with the activation of skin mast cells. Incorporate meditation, yoga, breathing exercises and other stress-reducing techniques into your daily life.
  4. Maintaining a schedule is a great way to help stabilise your mast cells because they exhibit circadian rhythm patterns. Try to wake up and go to sleep at the same time each day. Also, avoid electronic screens before bed or wear a pair of blue-blocking glasses for better hormone regulation.

2. Increasing Histamine Breakdown

Diamine oxidase (DAO) stabilises mast cells, but more importantly, it is the predominant enzyme that breaks down histamine. To increase your DAO levels, you can take DAO enzymes. I recommend taking two capsules with each meal. You can also increase your DAO levels with high doses of vitamin C.

You should also avoid anything that blocks the release of DAO. First and foremost, this includes any form of alcohol. Histamine and alcohol metabolic pathways share common enzymes—aldehyde oxidase and aldehyde dehydrogenase. When you drink alcohol, histamine is released from your mast cells and DAO is simultaneously inhibited. This can cause a runaway chain reaction, which results in greater sensitivity to alcohol and worsening histamine intolerance. Aged cheese and wine together may induce a major mast cell activation.

3. Reducing Histamine Levels

To reduce histamine levels in your body, you should adopt a low histamine diet. Avoid the following:

  • Alcohol
  • Smoked and cured meat
  • Seafood
  • Pickled foods
  • Fermented foods
  • Leftovers
  • Canned fish or meat
  • Berries, especially strawberries
  • Nightshades, including tomatoes and potatoes
  • Preservatives
  • Vinegar

Try to eat foods as fresh as possible, and stick to anti-inflammatory foods. Adding rosemary oil to fish reduces histamine formation as the fish ages.

For a comprehensive resource on low-histamine foods, diets and recipes, I recommend my guide on the Low Histamine Diet as well as Healing Histamine.

4. Stabilising the Immune System and Reducing Inflammation

Calming the immune system and reducing inflammation is a critical part of any MCAS protocol. The recommendations above mainly help to stabilise the immune system and reduce inflammation, though there are a few other effective methods:

  1. Check and treat any underlying infections – These can contribute to a widespread inflammatory response in the body if left untreated. These may include H. pylori, Epstein Barr and herpes simplex.
  2. Correct gut dysbiosis – Correcting the balance of your gut microbiome has been shown to reduce inflammation and improve immune system health. Specifically, there are certain strains of probiotics that have been shown to help breakdown histamine, including:

Many patients will need to experiment with various therapeutic options at different doses until they find the right combination of medications that helps with their particular symptoms. If unusual side effects are experienced with known medications, remember that the excipients contained within the medications may be the problem, not the medications themselves.

While there is no cure for MCAS, there is a lot you can do to minimise the condition’s impact on your life. The good news is that most of the natural treatments for MCAS are recommendations for a healthier life that anyone would benefit from. To read more about living with MCAS, check out 12 Tips for Living With Mast Cell Activation Syndrome.

With a chronic illness such as MCAS, it is possible to live a full life—the treatment just requires a careful, comprehensive approach. If you believe you have MCAS or have already received a diagnosis and need a functional medical doctor who specialises in MCAS in Calgary, Alberta, you can request an appointment here or call 403-206-2333.

Resources:

https://hoffmancentre.com/2017/11/mast-cell-activation-syndrome-histamine-immune-system-runs-rampant/ https://www.ncbi.nlm.nih.gov/pubmed/22470478
https://www.ncbi.nlm.nih.gov/pubmed/24477254
https://www.ncbi.nlm.nih.gov/pubmed/28458279
https://www.ncbi.nlm.nih.gov/pubmed/9421440
https://www.nature.com/articles/srep39934
https://www.ncbi.nlm.nih.gov/pubmed/17490952
https://www.ncbi.nlm.nih.gov/pubmed/25095772
https://www.ncbi.nlm.nih.gov/pubmed/10344773
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315779/
https://www.ncbi.nlm.nih.gov/pubmed/12793960
https://www.ncbi.nlm.nih.gov/pubmed/21390145
https://hoffmancentre.com/2017/11/12-tips-living-mast-cell-activation-syndrome/

Is Your Histamine Intolerance Actually Mast Cell Activation Syndrome?

Are you wondering if your histamine intolerance or allergic reactions are actually an issue with your mast cells? Or maybe you’ve experienced chronic symptoms that seem like allergies for as long as you can remember?

Histamine is an important but potentially dangerous mast cell mediator and part of the immune system response. Histamine is secreted by mast cells into surrounding connective tissues when there’s an exposure to an allergen. Histamine works by increasing the permeability of blood vessels and allowing white blood cells and proteins to access affected tissues more easily.

Histamine intolerance is a condition that’s growing in recognition. However, it is mostly considered a part of a much wider problem which is defined as Mast Cell Activation Syndrome (MCAS); a situation in which part of the innate immune system becomes hyperactive and releases multiple inflammatory mediators, of which histamine is one.

Histamine intolerance is considered to be present when there is just too much histamine in your body for it to cope. This is further exacerbated by the fact that histamine is also present in many foods and so a person’s histamine burden may be further amplified by their diet. This histamine isn’t broken down due to a DAO gut enzyme deficiency, or a HNMT deficiency in the liver. A comprehensive guide regarding the low-histamine diet can be found here.

Histamine intolerance is a subset of MCAS

Mast Cell Activation Syndrome is often confused for histamine intolerance. The difference between the two is that when a person has MCAS, their mast cells secrete many mediators, not just histamine. Though, histamine is still a major component of MCAS it’s only a piece of the puzzle.

Histamine intolerance is actually a subset of MCAS. If you’ve discovered you’re histamine intolerant or recently received a diagnosis, you should also be tested for MCAS.

Conditions associated with MCAS

Because MCAS is a multisystem condition with inflammation at it’s core, it’s been associated with a number of other conditions including:

  • Chronic inflammatory response syndrome (CIRS)
  • Irritable bowel syndrome
  • Gut dysbiosis – the gut is rich in mast cells and home to over 70% of the immune system. Parasites, bacteria, fungi, and parasites can all trigger gut mast cells.
  • Obesity
  • Diabetes
  • Asthma and allergies
  • Autoimmune diseases (such as lupus, rheumatoid arthritis, and Hashimoto’s)
  • Candida overgrowth
  • Celiac disease
  • Parasite infections
  • Skin conditions such as eczema and psoriasis
  • Food intolerances and allergies
  • Gastroesophageal reflux (GERD)
  • Infertility and endometriosis
  • Postural orthostatic hypotension (POTS)

If you’ve been diagnosed with one of these associated conditions, it could mean that being diagnosed with MCAS is more likely. Make an appointment with a doctor who specializes in MCAS and begin the diagnostic process. It can be somewhat of a journey, but once you know you have MCAS there’s a lot that can be done to relieve your symptoms and improve your life.

For a comprehensive guide on Mast Cell Activation Syndrome, you can read my in-depth article, Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant.

Resources:

https://www.ncbi.nlm.nih.gov/pubmed/25773459

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4507480/

https://www.ncbi.nlm.nih.gov/pubmed/15462834

12 Tips for Living With Mast Cell Activation Syndrome

Living with Mast Cell Activation Syndrome (MCAS) usually results in widespread symptoms that are seemingly unrelated. Unfortunately, most people go many years or even their whole life without a diagnosis.

If you’ve been diagnosed with MCAS or suspect you have this condition, the best course of action is making a series of lifestyle changes and working with your functional medicine doctor. Fortunately, many of the changes are easy to implement and you’ll see the benefits from implementing them fairly quickly.

Try not to get overwhelmed by this list, instead pick one or two items and incorporate them into your routine. Add a few items week by week, and soon enough you’ll have a comprehensive plan that has the potential to significantly improve your symptoms and your quality of life.

1. Adopt a low histamine diet

Avoid leftover foods, alcohol, cured meats, canned fish, pickled and fermented foods, berries, citrus, nuts, chocolate, dairy, yeast, soy sauce, tomatoes, vinegar, and preservatives. A comprehensive guide to a low histamine diet can be found here.

2. Avoid triggers of MCAS (non-food items)

Avoid temperature extremes, mold, emotional stress, insect bites, chemicals in personal products, medications that liberate histamine of block DAO, sodium benzoate (common food preservative), airborne chemicals, smoke, heavy metals and anesthetics.

3. Work on your gut health

Good gut health is a cornerstone of overall wellness and will help you get your MCAS under control. Cut back on food that damages the gut or causes inflammation. Take probiotics and a DAO enzyme (generic name Umbrellux DAO).

4. Stabilize mast cell mediator release

Stabilize mast cell release of histamine with quercetin and vitamin C.

5. Use H1 and H2 blockers every 12 hours

Try using 5 mg of levocetirizine twice daily and 20 mg of famotidine twice daily.

6. Block nighttime histamine release

You can block nighttime histamine release and get a better night’s sleep by taking 0.25 -1 mg of ketotifen or zaditen at night.

7. Treat existing infections

Treat any existing infections to help your body heal and reduce mast cell triggers. Get a thorough examination with your functional medicine doctor and test for any pathogens.

8. Identify and remove toxins and allergens

When you have MCAS, you’ll do your body a world of good by reducing its toxin burden. You can reduce your exposure to toxins in your daily life through cleaning up your personal care products and opting for natural solutions, using natural household cleaners, and removing mercury fillings.

9. Take helpful nutrients

Support your health with important nutrients that assist in treatment. Some of these include vitamin B6, alpha lipoic acid, vitamin C, selenium, omega-3s, N-acetylcysteine, methyl-folate, SAMe, and riboflavin.

10. Add supportive herbs

Take nigella sativa, butterbur, turmeric, ginger, and peppermint to support your MCAS treatment.

11. Get into a routine and stick to it

Try to stick to a routine because your body’s cycles are closely linked to your daily activities. This will also help you get high quality sleep, which is essential to reducing the impact of MCAS on your life.

12. Reduce stress

Stress can activate your mast cells and cause them to release mediators like histamine. Reducing stress is important for anyone living with MCAS.

For a comprehensive guide on Mast Cell Activation Syndrome, you can read my in-depth article, Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant.

Another great resource for dealing with histamine and MCAS using diet and exercise is through Yasmina Ykelestam at Healing Histamine.

How to Tell If You Have Mast Cell Activation Syndrome

If you’ve been searching for solutions to your mysterious health symptoms, they could be caused by Mast Cell Activation Syndrome.

Mast cell activation syndrome (MCAS) is an immunological condition where mast cells inappropriately secrete mast cell mediators. Mediators include but are not limited to histamine, which can cause widespread and chronic inflammation.

This mediator release can be excessive and/or chronic and result in long-lasting symptoms in almost any cell of the body where their receptors are found. This can potentially affect every organ system in the body.

Some experts believe as many as 14 to 17 percent of the US population have MCAS, which is one out of every six to seven people. It’s also been estimated to take up to 10 years to reach a MCAS diagnosis. This is mostly due to the lack of awareness surrounding MCAS.

Because mast cell activation syndrome goes unnoticed for years, I’d like to dig a bit deeper and uncover some of the symptoms and lab work available that can help with MCAS diagnosis.

Symptoms of MCAS

Patients who have MCAS typically have been struggling with inflammation-related symptoms over the years, which commonly include:

  • Having allergies as a toddler
  • Various rashes that came and went
  • Gut conditions (that may have been misdiagnosed)
  • Anxiety
  • Headaches
  • Insomnia
  • Poor wound healing

While these are common MCAS symptoms due to mast cell mediators occurring throughout the body, a person can be affected by symptoms that are more widespread. These can include, but are not limited to:

  • Feeling as though you’ve always been sick
  • Overreaction to bee stings and mosquito bites
  • Shortness of breath
  • Feeling lightheaded when you stand
  • Insomnia
  • Ringing of the ears
  • Facial and chest flushing
  • Frequent colds, infections or fevers
  • Food, chemical, and drug sensitivities and intolerances
  • Heat intolerance

You can also find a comprehensive list of MCAS symptoms in my in-depth article, Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant.

You have the option to get testing done with a doctor to help confirm the MCAS diagnosis. I recommend you have these tests done with a doctor who’s experienced in MCAS because it’s still largely unknown, even in the medical community.

Lab work for MCAS

Working with a doctor who specializes in MCAS is your best bet as you’ll need to get testing on multiple occasions since the symptoms of MCAS wax and wane. False negatives are a common occurrence with MCAS testing. In fact, positive lab work is only obtained 20 percent of the time. However, testing can still give you a lot of valuable information regarding your mast cell mediator status. Testing for MCAS is quite complex and requires specialized handling of tissue samples.

The most important tests are:

  • Histamine – plasma – Quest 36586 – must be chilled. Normal range – 28-51 ug/l.
  • N-Methylhistamine – 24-hour urine – must be chilled. Normal range – less than 200 mcg/g.
  • Prostaglandin D2 – plasma – must be immediately chilled and spun in a refrigerated centrifuge. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  • Prostaglandin D2 (PGD2) – 24-hour urine – specimen collection must be chilled. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  • Chromogranin A – Quest 16379 – must be off proton pump inhibitors (PPIs) and H2 blockers (Pepcid and Zantac) for 5 days before tests, since they can falsely elevate chromogranin A.

There are others you can have taken, which you can find in more detail in my in-depth article, Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant.

More information regarding a low-histamine diet may found found in my guide here.

Resources:

Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant

There is undoubtedly an escalating epidemic of chronically unwell people in North America. The present method of looking at illness is geared toward a single organ, a single specialty, a single drug, and voila! – let’s hope for a cure. Often patients go from pillar to post to see various medical consultants according to specialty (gastroenterologists, dermatologists, etc.), only to discover there isn’t one underlying syndrome or root cause that explains all the assorted symptoms the patient is experiencing. Patients may be given multiple diagnoses with multiple treatment options or medications, often with conflicting interactions and side effects that are worse than the underlying condition they are meant to treat.

Recently, a number of new ways of looking at chronic multisystem, multisymptom diseases has emerged as pioneering physicians connect previously disconnected dots and make sense of disparate symptoms that were never understood as components of a single syndrome. The first is the trailblazing work of Dr. Ritchie Shoemaker on chronic inflammatory response syndrome (CIRS). This syndrome is induced primarily by mold biotoxins and the inflammagens of water-damaged buildings, ciguatera or pfiesteria infestations, or Lyme disease and co-infections. The second is the pioneering work of Dr. Lawrence Afrin on mast cell activation syndrome (MCAS). Dr. Afrin is a board-certified hematologist/oncologist who recently wrote a book, “Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.”

Two important books that address the complex syndromes that may underlie many chronic, multisymptom, multisystem disease conditions are:

  • Surviving Mold: Life in the Era of Dangerous Buildings, by Ritchie C. Shoemaker, M.D.
  • Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, by Lawrence B. Afrin, M.D.

What is Mast Cell Activation Syndrome?

Mast cell activation syndrome (MCAS) refers to a group of disorders with diverse causes presenting with episodic multisystem symptoms as the result of mast cell mediator release, often without causing abnormalities in routine laboratory or radiologic testing. Most people with MCAS have chronic and recurrent inflammation, with or without allergic symptoms. This occurs when an aspect of the innate immune system becomes overactive and releases a flood of inflammatory chemicals, which may affect every organ in the body. The symptoms of MCAS will wax and wane over time. Another way to think of this is the symptoms will flare up and go into remission, affecting different organs and body parts, over and over again throughout a person’s life, without a common unifying theme or established diagnoses to account for the patient’s presentation of symptoms.

MCAS can present subtly but may become more serious as an individual ages. If you were to chart the symptoms of MCAS on a timeline, beginning at birth you can often identify symptoms that began at a very young age.

For some, MCAS becomes a highly probable diagnosis when they notice that they have had various symptoms of an inflammatory nature over the years. These symptoms may include:

  • Allergies as a toddler
  • Various skin rashes that came and went
  • Disturbed gut function (possibly diagnosed as irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD) or small intestinal bacterial overgrowth (SIBO))
  • Unexplained anxiety
  • Headaches
  • Insomnia
  • Poor wound healing

Any of these symptoms could indicate MCAS.

You can take our Hoffman Centre for Integrative Medicine MCAS Questionnaire HERE.

Dr. Afrin believes that MCAS is an epidemic with as many as 14 to 17 percent of the US population having MCAS – one out of every six to seven individuals. It has been said that it may take up to 10 years and numerous doctor visits before someone is adequately diagnosed and treated by a knowledgeable physician—or the patient figures it out for themselves!

What are Mast Cells, Mast Cell Mediators, and Histamine?

Mast cells are types of white blood cells that release up to 200 signalling chemicals, or mast cell mediators, into the body as part of an immune system stabilizing defense response against foreign invaders (parasites, fungi, bacteria, or viruses), allergens and environmental toxins.
We need mast cells to protect us from infection, heal wounds, create new blood cells, and develop immune tolerance. However, in conditions in which these cells are dysfunctional or overactive, they can cause serious issues.

Mast cells are found in most tissues throughout your body. In particular, they are found in tissues that are in close contact with the environment such as your skin, airways, and gastrointestinal tract. Mast cells are also found in your cardiovascular, nervous, and reproductive systems.

Mast cell mediators are the preformed granules secreted by mast cells in response to an outside stimulus, which can occur very quickly, in milliseconds. Mast cell mediators include histamine, proteases, leukotrienes, prostaglandins, chemokines, and cytokines. Their job is to signal and guide other cells, tissues, and organs to respond to the hostile invaders. These mast cell mediators provoke potent inflammatory responses that can include urticaria (AKA hives—skin rash and swelling), angioedema (swelling beneath the skin surface), bronchoconstriction (airway constriction), diarrhea, vomiting, hypotension (low blood pressure), cardiovascular collapse, and death, all within a matter of minutes.

Detailed Symptoms of Mast Cell Activation Syndrome

Patients who come into my office with MCAS usually have multisystem, multisymptom inflammatory responses. These symptoms have often caused them to trudge from doctor to doctor, undergoing rounds of testing, causing them to feel extraordinarily confused as to what’s happening to their body. Because the symptoms of MCAS have so broad a reach and differ so considerably from person to person I’d like to break them down by nonspecific, general clues, and organ system signs.

See Keith Berndtson’s (http://havenmedical.com/) slide below: Permission to use slide given by author.

 

Mast Cells The Bad

 

Histamine Intolerance & Mast Cell Activation

 

Most Common General Symptoms:

  • “I’ve been sick for as long as I can remember”
  • “I overreact to bee stings, mosquito bites, penicillin and most medications”
  • “I can’t take a full breath”
  • “Whenever I stand up I get lightheaded”
  • Insomnia/sleep disorders starting early in life
  • Tinnitus/ringing in the ears from a young age
  • Vomiting as an infant
  • Abdominal pain as an infant
  • Facial and chest flushing ( a red flush when embarrassed or stressed)
  • Dermatographism—a red line appearing on the skin when scratched with a blunt object
  • Frequent infections, cold, viruses, gut viruses as an infant, adolescent or adult
  • Fatigue and malaise
  • Frequent fevers
  • Edema—“water” accumulation in different parts of body
  • Waxing and waning of symptoms
  • Food, drug, and chemical intolerances (especially fragrances). This is a very common symptom which may be exacerbated by phase 1 and phase II liver detoxification problems as identified by gene testing
  • Sense of being cold all the time
  • Decreased wound healing
  • Hypersensitivity to much in environment, including medications
  • Weight gain or loss
  • Heat intolerance
  • Frequent family history of cancer, especially intestinal or bone marrow (hematologic)
  • Generally feeling inflamed
  • Generalized lymphadenopathy (enlarged lymph nodes)

MCAS Symptoms by Organ System

Eyes – Red eyes, irritated eyes, dry eyes, burning eyes, difficulty focusing vision, and conjunctivitis (pink eye).

Nose – Nasal stuffiness, sinusitis, postnasal drip, hoarseness, laryngitis, nose bleeds (epistaxis), and intranasal sores.

Ears – Ringing in ears (tinnitus) and Eustachian tube dysfunction (blocked, popping ears).

Throat – Vocal cord dysfunction, throat swelling, sores on tongue/mouth, itchy throat, burning mouth, and difficulty swallowing

Skin – Hives, angioedema (swelling of the skin), skin flushing, itching, skin rashes, dermatographism (when scratched skin causes a red welt), chronic itching, urticarial pigmentosa (legion/hive-like spots on the skin), flushing, bruising easily, reddish or pale complexion, cherry angiomata (skin growths), patchy red rashes, red face in the morning, cuts that won’t heal, fungal skin infections, and lichen planus.

Cardiovascular – Fainting, fainting upon standing, increased pulse rate (tachycardia), palpitations, spikes and drops in blood pressure, high pulse or temperature, high triglycerides, lightheadedness, dizzy, hot flashes, and postural orthostatic hypotension syndrome (POTS).

Respiratory – Wheezing, asthma, shortness of breath, difficulty breathing deep, air hunger, dry cough, chronic obstructive pulmonary disease (COPD), and chronic interstitial fibrosis.

GI Tract – Left upper abdominal pain, splenomegaly (enlarged spleen) epigastric tenderness, nausea, vomiting, diarrhea and/or constipation, abdominal cramping, bloating, non-cardiac chest pain, malabsorption, GERD/acid reflux, cyclic vomiting syndrome, colonic polyps, and gastric polyps.

Liver – High bilirubin, elevated liver enzymes, and high cholesterol.

Neurological – Numbness and tingling (especially in the hands and feet), headaches, migraines tics, tremors, pseudo-seizures, true seizures, waxing and waning brain fog, memory loss, poor concentration, difficulty finding words, and spells of cataplexy (suddenly becoming disconnected from and unresponsive or unreactive to the world around).

Musculoskeletal – Muscle pain, fibromyalgia, increased osteopenia, osteoporosis, weakness, and migratory arthritis (joint pain).

Coagulation – History of clots, deep vein thrombosis, increased bruising, heavy menstrual bleeding, bleeding nose, and cuts that won’t stop bleeding.

Blood disorders – Anemia, increased white blood cell count, platelets, decreased white blood cell counts, decreased neutrophils, decreased lymphocytes, decreased platelets, reductions in CD4 helper lymphocytes, reductions in CD8 positive suppressor lymphocytes, reductions or excesses of IgA, IgG, IgM, IgE, a known condition called MGUS, myelodysplastic syndrome (reduced red cells, white cells, platelets), and increased MCV (mean corpuscular volume).

Psychiatry – Anxiety, panic, depression, obsessive compulsive disorder (OCD), decreased attention span, attention deficit/hyperactivity disorder (ADHD), forgetfulness, and insomnia.

Genitourinary – Interstitial cystitis, recurrent bladder infections, sterile bladder infections, and frequent urination.

Hormones – Decreased libido, painful periods, heavy periods, infertility, and decreased sperm counts.

Dental – Deteriorating teeth.

Anaphylaxis – Difficulty breathing, itchy hives, flushing or pale skin, feeling warm after exposure, weak and rapid pulse, nausea, vomiting, diarrhea, dizziness and fainting.

Illnesses Associated with MCAS

There are a number of illnesses and conditions that can exacerbate MCAS, including chronic inflammatory response syndrome (CIRS), poor methylation as determined by genetic MTHFR defects (leading to low SAMe, which degrades histamine intracellularly), deficiencies in histamine-N-methyltransferase enzyme (HNMT; degrades histamine in the liver) and deficiencies in the gut-based diamine oxidase (DAO) enzyme, which degrades histamine found in food. Histamine is one of the many inflammatory mediators released by individuals with MCAS. For those with healthy DAO levels, nearly all the histamine derived from food sources are broken down by their DAO enzymes.

But when there’s a lack of DAO, histamine can assist in creating intestinal permeability and upregulated inflammation. If a person suffers from small bowel intestinal overgrowth (SIBO) or has significant small intestinal issues (called dysbiosis), the lining of the small intestine may be disrupted. This leads to even lower levels of the DAO enzyme and hence, intestinal permeability.

Here’s a relatively common situation:

A woman who struggles with chronic fatigue and malaise throughout her life gets pregnant and suddenly feels energetic and wonderful throughout her pregnancy. Studies suggest this could be because DAO levels are up to 500 times higher than normal during normal pregnancies.

Alternatively, a person who was previously quite healthy develops a bacterial infection, is prescribed a 10-day course of antibiotics and suddenly develops severe reactions to certain foods. When looked at closely, these foods are found to contain high histamine levels. The current fads of consuming bone broths and fermented foods such as sauerkraut and kombucha only help to exacerbate this condition.

Histamine can have a powerful effect on a person’s wellbeing, making it important to be aware of the symptoms that indicate MCAS.

Histamine Intolerance is a Subset of MCAS

Mast cell activation syndrome (also referred to as mast cell activation disorder (MCAD)) is sometimes confused with histamine intolerance. The major difference is that with MCAS, a person’s mast cells secrete many mediators of inflammation, such as leukotrienes and prostaglandins, not just histamine—although histamine is an important component. Histamine intolerance is considered a subset of MCAS where too much histamine is released from mast cells, too much histamine is taken in by consuming histamine-containing foods, histamine is not broken down in the gut because of DAO gut enzyme deficiency, or not broken down in the liver because of HNMT deficiency.

However, histamine is not all bad; it serves useful functions as a neurotransmitter, helps to produce stomach acid, and is an important immune mediator when not in excess.

Diagnosis of Mast Cell Activation Syndrome

A proper diagnosis of MCAS requires the presence of several symptoms from the above list. In addition, other disorders should be ruled out by a specialist in functional medicine.

MCAS is so difficult to diagnose because it may present in so many varied ways that traditional health care providers are not always trained to assess. There is a tremendous range of possible presentations, with local and remote effects which wax and wane over time.

If MCAS is suspected at our office, I send patients home with Chapter 6 of the book Mast Cells – Phenotypic Features, Biological Functions and Role in Immunity by David Murray. This chapter was written by Dr. Afrin, entitled Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome. It describes, system by system, most of the symptoms that can be attributed to this diagnosis. Patients then return the symptom check list, which we review together slowly in order to establish the clinical diagnosis. I then order the lab tests to prove its existence.

In Dr. Afrin’s own words, “The general presenting motif of MCAS is chronic multisystem polymorbidity, generally of an inflammatory theme and with assorted elements waxing and waning over time, sometimes in synchronization with one another but more often cycling with different periods and amplitudes. The range of mast cell mediators and their effects is so great that “unusual” presentations actually become de riguer.”

Lab tests can be done to check for mast cell mediators. Tryptase is one of the most common mediators released by mast cells in those with mastocytosis (abnormal numbers of mast cells), but not for those with MCAS (abnormal release of proinflammatory mediators by mast cells, but not an increased number, as in the much rarer mastocytosis). Lab tests can also check for other mediators, such as histamine and prostaglandins; however, most doctors and many labs, particularly those in Canada, will not run the tests that are required to make the diagnosis.

Sometimes patients are able to identify triggers of their MCAS. These may be food or non-food triggers. Pay close attention to what you’ve eaten and have been exposed to when symptoms worsen.

After symptoms have been identified, other conditions have been ruled out, lab tests have been analyzed, and some treatment techniques have proven to relieve symptoms, an official diagnosis of MCAS is made.

In an effort to help you notice common triggers, below are 10 non-food and 10 food triggers that commonly provoke mediator release in those with MCAS.

10 Non-Food Triggers of Mast Cell Activation Syndrome

If you’re struggling or suspect you have MCAS, it’s in your best interest to reduce your exposure to these triggers, including:

  1. Extreme temperatures – either hot or cold
  2. Exposure to mold or Lyme disease and coinfections
  3. Emotional stress
  4. Insect bites
  5. Chemicals in personal products
  6. Medications that liberate histamine or block DAO
  7. Sodium benzoate –a common food preservative
  8. Airborne smells from chemicals or smoke
  9. Heavy metal toxicity – aluminum, mercury, lead, cadmium, bismuth and arsenic are known to be mast cell destabilizers
  10. Anesthetics

10 High Histamine Foods that Should be Avoided

Studies have shown that eliminating foods high in histamine and other triggers can significantly improve symptoms. Ten of the highest histamine foods include:

  1. Yeast and alcohol
  2. Dairy (especially fermented dairy like kefir)
  3. Gluten
  4. Fermented foods, especially sauerkraut, kombucha, miso
  5. Cured and smoked meats and fish
  6. Shellfish
  7. Citrus foods – lemon, lime, orange
  8. Vinegar
  9. Leftover and aged food – especially if left in the refrigerator and not frozen immediately
  10. Berries – strawberries, blueberries, raspberries

Conditions Associated with Mast Cell Activation Syndrome

Because MCAS is a chronic, multisystem, multisymptom condition with an inflammatory theme, it’s been associated with a number of conditions and diseases, including:

  • Chronic inflammatory response syndrome
  • Irritable bowel syndrome
  • Gut dysbiosis – the gut is rich in mast cells and home to over 70% of the immune system. Parasites, bacteria, fungi, and parasites can all trigger gut mast cells.
  • Obesity
  • Diabetes
  • Asthma and allergies
  • Autism
  • Autoimmune diseases (such as lupus, rheumatoid arthritis, and Hashimoto’s)
  • Candida overgrowth
  • Celiac disease
  • Parasite infections
  • Skin conditions such as eczema and psoriasis
  • Food intolerances and allergies
  • Gastroesophageal reflux (GERD)
  • Infertility and endometriosis
  • Chemical and medication sensitivities
  • Postural orthostatic hypotension (POTS)
  • CIRS – exposure to mold mycotoxins is a potent stimulator of mast cell activation
  • Migraines
  • Depression
  • Fibromyalgia
  • Fungal infections
  • Tinnitus
  • Multiple Sclerosis
  • Cancer

In general, inflammation accompanies MCAS and most of its coinciding or associated illnesses. If you are struggling to get one of these illnesses under control, there’s a possibility MCAS could be causing further complications.

It’s a good idea to check for MCAS if you have any of the above conditions and vice versa.

You can take our Hoffman Centre for Integrative Medicine MCAS Questionnaire HERE.

Ask Your Doctor for Lab Work

MCAS can be difficult to diagnose because lab test results may fluctuate as symptoms wax and wane. Many tests may need to be repeated during times of symptom flare-ups. Poor handling of specimens by the laboratory is also a real issue affecting results. Lab testing may thus result in false negatives despite a clinical history highly consistent with MCAS. Furthermore, MCAS doesn’t always cause abnormalities in lab work, adding to the complexity of diagnosis. Positive lab work is obtained only 20% of the time.

If you’re interested in getting lab work done to check for MCAS, I recommend the tests listed below. The top five, in bold, are the most important and necessary to establish a diagnosis:

  1. Histamine – plasma – Quest 36586 – must be chilled. Normal range – 28-51 ug/l.
  2. N-Methylhistamine – 24-hour urine – must be chilled. Normal range – less than 200 mcg/g.
  3. Prostaglandin D2 – plasma – must be chilled. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  4. Prostaglandin D2 (PGD2) – 24-hour urine – chilled. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  5. Chromogranin A – Quest 16379 – must be off proton pump inhibitors (PPIs) and H2 blockers (Pepcid and Zantac) for 5 days before tests, since they can falsely elevate chromogranin A.
  6. Prostaglandin 11-beta F2 Alpha (PGF2alpha) – 24-hour urine – chilled. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  7. Serum Tryptase – Quest 34484. Rarely elevated in MCAS. NR less than 11.5 ng/ml. Positive if increase over baseline of 20% or baseline greater than 15.
  8. Leukotriene E4 – 24-hour urine – chilled. Must be off NSAIDS (Motrin, Advil), aspirin, ASA, anything containing aspirin, for 5 days.
  9. Plasma heparin Anti-XA (must be off heparin products) – chilled. Degrades quickly.
  10. Blood clotting profile – Thrombin/PT/PTT/INR.
  11. Anti-IgE Receptor antibody.
  12. Neuron Specific Enolase – Quest 34476.
  13. Plasma pheochromocytoma workup.
  14. Porphyria workup.
  15. Factor VIII deficiency.
  16. Plasma free norepinephrine – Quest 37562.
  17. Urinary metanephrines – can b done in normal Calgary labs.
  18. Immunoglobulins – IgG, IgM, IgE, IgA
  19. Bone marrow biopsy looking for the following markers: CD117/CD25; CD117/CD2.
  20. Gastrin
  21. Ferritin
  22. CBC – eosinophils, basophils.
  23. Antiphospholipid antibodies.
  24. Genetic testing looking for Phase 1 and Phase II liver detox and methylation defects.
  25. Dunwoody Labs – test zonulin, histamine, DAO enzyme deficiency.

Many of these tests require specimens that are chilled by using a special centrifuge as the mast cell mediators are fleeting and degrade very quickly if not handled properly.

Further tests that may be of help:

  1. MTHFR gene mutations
  2. MAT gene mutations
  3. DAO gene mutations
  4. HNMT gene mutations. The liver plays a role in histamine intolerance. Histamine is not just disassembled in the gut by diamine oxidase (DAO). It is also disassembled in the liver, where it is in high concentrations, by HNMT.
  5. Glutathione levels. If glutathione levels are depleted, the inflammatory mediators released by mast cells may not be adequately neutralized by glutathione, the master antioxidant. This can lead to a vicious circle where oxidative stress results in mast-cells releasing inflammatory chemicals, which need to be detoxified by Phase 1 of the liver. If glutathione is low, the liver will be unable to neutralize them, resulting in further inflammation and oxidative stress.

These tests can help you identify whether MCAS is the cause of your mysterious and seemingly unrelated symptoms.

Treatments for Lowering Histamine and Reducing MCAS Symptoms

Now, you might be thinking, “Why can’t I just take an antihistamine?”

Antihistamines don’t actually reduce histamine release. They only block histamine receptors, preventing you from feeling the symptoms. You may need a round-the-clock blockade of the H1 and H2 receptors, every 12 hours.

If you want lasting relief for MCAS:

  • Histamine 1 blockers – hydroxyzine, doxepin, loratadine, fexofenadine, diphenhydramine, ketotifen, and cetirizine.
  • Histamine 2 blockers – famotidine (Pepcid, Pepcid AC), cimetidine (Tagamet, Tagamet HB), ranitidine (Zantac). Famotidine is chosen most often as it has fewer drug interactions than Tagamet).
  • Mast cell stabilizers – cromolyn, ketotifen (both a mast cell stabilizer and an H1 blocker), hydroxyurea, quercetin.
  • Leukotriene inhibitors – montelukast (Singulair), zafirlukast (Accolate)
  • Tyrosine kinase inhibitors.

H1 and H2 blockers must be taken every 12 hours for maximum effect. It may take up to 12 months to achieve maximum therapeutic effect. The doses may need to be increased to up to three times the recommended over-the-counter dosing.

Here is how I approach treatment with my MCAS patients:

  • Eat a low-histamine diet: Remove alcohol, smoked and cured meat, tinned fish, pickled and fermented foods, berries (strawberries being one of the worst culprits), citrus, nuts, chocolate, dairy, spinach, yeast, soy sauce, tomatoes and tomato products, preservatives, and vinegar. Stop eating leftover food. This will only reduce the incoming histamine and won’t affect the mast cell overactivity within the cells of the body. A comprehensive guide regarding the low-histamine diet can be found here.
  • Promote good gut health: Cut back on gut-damaging and inflammatory foods, and increase probiotics. Use a DAO enzyme, which goes under the generic name Umbrellux DAO – two tablets, 20 minutes before each meal.
  • Stabilize mast cell release of histamine with quercetin and vitamin C 500 mg – two tablets three times daily. We use a product called Natural-D Hist from Ortho Molecular Products.
  • Use H1 and H2 blockers every 12 hours – I use, on average, levocetirizine 5 mg twice daily and famotidine 20 mg twice daily.
  • Block nighttime histamine release with ketotifen or zaditen – 0.25–1 mg at night. Excellent sleep aid, mast cell stabilizer, H1 antihistamine. Excellent treatment for eosinophilic esophagitis.
  • Treat any existing infections: Have a thorough examination done to identify and treat any potential infections in the body which are powerful mast cell triggers. Stool testing by Genova labs and Cyrex Lab Pathogen Testing (array 12) can be of assistance in identifying pathogens.
  • Identify and remove toxins and allergens: This could be heavy metals, mercury fillings, cosmetics, and household cleaners.
  • Nutrients that assist in the treatment: This includes vitamin B6, alpha lipoic acid, vitamin C and E, selenium, omega-3s, N-acetylcysteine (NAC), methylation donors like methyl-folate, SAMe, and riboflavin.
  • Herbs: Nigella sativa, butterbur, turmeric, ginger and peppermint.
  • Get into a solid routine: Getting high quality sleep and staying on schedule helps keep mast cells in check.
  • Reduce stress: Stress, through the action of corticotropin hormone, can activate your mast cells and cause them to destabilize and release mediators.
  • One of the best resources for how to deal with histamine and mast cell activation through nutrition and supplementation is the website and Facebook posts by Yasmina Ykelenstam www.healinghistamine.com.

It can be incredibly discouraging to feel so sick for so long and not find any answers. It is my hope that we continue to learn more about multisystem conditions such as MCAS and spread useful information so it may end up in the hands of those suffering.

Share this article with friends and family to help spread the word about mast cell activation syndrome. They may discover it’s more than allergies that’s keeping them down.

Resources

Yasmina Ykelenstam – excellent resource:  www.healinghistamine.com.

Dr. Afrin’s website – the main researcher:  www.mastcellresearch.com. Many links to mast cell information are available on this website.

Dr. Theoharides – another major researcher: http://www.mastcellmaster.com/

Hoffman Centre for Integrative Medicine MCAS Questionnaire: https://hoffmancentre.com/wp-content/uploads/2017/11/7.-Mast-Cell-Activation-Syndrome-Clinical-Questionniare-November-7-2017.pdf

https://www.youtube.com/watch?v=82dmZhCBuBo

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4231949/

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