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.

47 thoughts on “12 Tips for Living With Mast Cell Activation Syndrome”

  1. Hello,
    Have had several people tell me to get checked for what they had some kind of mast cell problems.
    Havnt yet as thought then if had it, Dr would prescribe something would react to ,but since oesto might be caused by it and have some slight symptoms even when eat better and carefull of environment.
    Most anithistamine react to but found Ketotifen at market that rid eye pain and helped feel more brain normal. If take more than twice a week, get sick. Rarely get flu or colds in last 20 yrs, so wonder if anithistamine increases immune system or decreases (so get a cold) immune system.
    Have found what helped the most was slowly decreasing oxalaic acid foods,(got worse for a while ).
    (now need to keep fingers toes warm as chillblain, trying quick fast exercises for a minute).

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  2. I have had continually flaring MCAS for over one year. I’m on all H1&2 blockers, cromolyn, DAO, but quercetin, ketotifen, and vit. C cause cardio/pulmonary reactions. I’ve gone from 162 to 125 lbs. due to limited foods. Next stop: NG tube. I have a doctorate, have been seriously researching all aspects of the syndrome, but I need a MCAS -aware functional medicine specialist in my area: Brandon/TampaBay, FL 33569. Do you have any recommendations? If so, I’d appreciate it. Thank you, and best wishes.

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    • I have a doctorate too but not in medicine so check what I say out w your medical doc. or dietician. My biggest qualification is that I’m mother & co-caretaker of my daughter who has MCAS et al. I’d hate to see you have to go to feeding tube. My daughter’s tolerated food is seriously limited too. What has helped her maintain weight is that I make sweet potato & rice flour rotis for her every week, with nothing else added: no salt, spices, or fat. This helps her maintain weight & satisfies hunger. It takes many hours to make the roti, but it’s worth it for her. If you want the recipe, lmk.

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        • Me too. I suffer daily and newly diagnosed. I am throwing reactions to all antihistamines and went to the hospital with tachycardia, then twice more with slightly lesser symptoms. Interested in anything can help. Working with an allergist now but he is going to refer me out I believe. Sending me for RA test but doubt that is it. I have chronic urticaria with an auto immune basis it says also EDS

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      • Sweet potato is extremely high in oxalic acid; that alone could be causing your daughter problems. Animal fat is very important for immune, endocrine systems and of course the brain. Low fat is a very bad idea since fat is very satiating and provides a very sustainable form of energy. Rice flour has no nutrient value other than starch (sugar) if white and, again, lots of oxalic acid in addition to phytates if whole. Neither nutritionally valuable. Your little one needs nutrient dense animal based foods to thrive.

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      • I am sorry to hear this about your daughter. That’s awesome of you to do this for her. I am very interested in this recipe please. Thanks.

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      • I have had histamine intolerance and MCAS for 6 years which was triggered by the PEG solution you consume prior to a colonoscopy. My body absorbed it and wreaked havoc on my body. I have been working closely with a naturopath, and take all the supplements mentioned above to help contain it. With the extreme dietary restrictions, my naturopath put me on Xymogen Opti-Cleanse GHI, stevia-free and sugar-free protein. One shake in the morning has all the nutrients I need to prevent me from returning to my malnourished state. I highly recommend it for anyone with severe food restrictions.

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    • Valarie, Im wondering if you were able to find a doctor in FL. Im in NW FL and desperately trying to find someone who treats mast disorders. Id appreciate any info you could provide.
      Thank you

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      • Found two places in the Central Florida area by google. Don’t know anything about them, however, they do specialize in Mast Cell issues:
        Windom Allergy & Sinus in Sarasota, Florida
        Dr. Trevino in Clearwater, Florida
        I really hope this helps.

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      • I have Post Concussion Syndrome from being rear-ended 23 months ago since then I have many gastrointestinal issues and testing diagnosed me with alpha-gal in february but I react to more than mammalian products , byproducts and hidden ingredients found in natural flavoring which is in almost everything and the manufacturers do not have to disclose what they are , unbelievable and unacceptable . Nothing should be made for human consumption with unknown ingredients for many reasons . I react to more than alpha-gal triggers such as all high histamine and histamine liberater foods. I am referred to an allergist but no contact yet . I need help in easy to understand and follow steps because of my post concussion syndrome , I am sick of being sick and can’t do this on my own at this time . I personally think it’s all brain injury related as symptoms correlate . I am from Madisonville Ky should you have any recommendations for doctors . thank you so very much .

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    • Hi Pat. Please contact our clinic using our contact page or you can give us a call at 403-206-2333.

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  3. This seems to be exactly what is going on with me when I notice the hives and feeling I’m going into anaphylactic shock and I frantically take a Benadryl. This will defiantly help me. Thank you so much ????????

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  4. My trptase level is elevated at 24 the oncologist I was reffered too. Has order a bone marrow biopsy. I’m very worried now. All of my symptoms match up with. Mast Cell activation symptom. Is normal to still need a bone marrow biopsy ?

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    • This level of tryptase is significantly elevated. I would follow the directives of your oncologist for the time being. Patients with MCAS rarely have elevated serum tryptase to that degree. However, that being said, make sure that you consult with a doctor well versed in MCAS so as to cover all your diagnostic bases.

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  5. Thanks, Bruce. Great summary of practical approaches to MCAS.
    I generally stay on a low histamine diet and use a probiotic that is formulated for this – Flora Symmetry – quite a different mix of organisms that regular probiotics. It seems to take several months for the probiotics to really take effect. I have been gluten free for 10 years as gluten was definitely a trigger. I use quercetin – Herbs of Gold Quercetin Complex. I having been take probiotics and quercetin morning and night for a few months. I think this regimen has helped a great deal.
    I also take fexofenadine 180mg if I eat high histamine foods. I am thinking of taking the fexo morning and night as well. I had sleep apnea (common with MCAS) and using a CPAP machine has helped immensely with cognitive and mood symptoms.
    A gluten free low histamine diet is a bit challenging to start with but worth it, I think. Just plain meat, veges and salad really. No spices or sauces except garlic and ginger. Fruits are limited to pears and apples. I eat dairy to counteract the osteoporosis risk with MCAS but suspect my symptoms would be less without it. I still drink wine and eat chocolate sometimes (life is too short..) but not too much and taking a fexo generally controls the skin symptoms.
    Good luck everyone. Feeling better is in your hands.

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    • Thank you for sharing your regiment with the community, it is always helpful for others to see how their peers can make their own choices with MCAS. For further information please contact us at the clinic.

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  6. This information is so wonderful. I have POTS, MCAS, POVS, Psoriasis, psoriatic arthritis, fibromyalgia, PTSD, Anxiety and Manic Depressive. I’m having some really bad flares and I’m working on eliminating certain foods, cleaners and outdoor triggers. I’m suffering in the skin area and my stomach issues. I’m having major food triggers and I’m getting to the point of not eating much. With all of my illnesses working together and against me, I quit my career of 23 years and I am at home. I filed for disability and I finding that some drs do not understand MCAS. I really appreciate your information. This is easier to understand. MCAS is so confusing. Thank You.

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    • Thank you for taking the time to read this article, I am glad you were able to find this helpful to you and I hope others will be able to use this to help spread understanding of MCAS.

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  7. Hi Dr Hoffman – en goeienaand vanuit Betty’s Baai in Suid-Afrika. Thank you for the very well structured and transparent advice. I myself am a qualified doctor, studied at Stellenbosch. Been battling with MCAS for a while, and your advice is spot on.
    Kind regards
    Tinus

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    • Thank you Tinus! It is valuable to know that the information presented is agreeable and accurate, especially when we may be able to collaborate to further our knowledge together.

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    • Making life easier with solutions helps people live their lives to the fullest, that is our goal!

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  8. I was recently diagnosed with Mastocytosis based on my upper GI biopsy. Do I still follow these 12 steps? If so what more should I do for this condition? Lastly, should I do the the bone marrow test to determine specifically which type of Mastocytosis I have? Thank you for your help.

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    • It is a complicated question that needs further questioning to answer. I do not have enough data to recommend for or against a bone marrow. Please follow directions of your health care professionals.

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  9. Hi Dr Hoffman

    I developed MCAS as a result of Covid. Many of us Long Covid sufferers have found that antihistamines and low histamine diet help immensely with our recovery.

    I think, however, that I had a pre-existing issue with histamine (I used to gag on fish even as a baby and could provide a long list of similar weirdness that now makes more sense).

    My question is will I have MCAS forever now? Or will my body calm down? I was always chronically inflamed anyway so the low histamine diet is helping loads with that but I do fear that my food choices will diminish over time. That I will start to react to more and more things.

    Thanks,
    Beth

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    • The diagnosis of MCAS does not mean that you will forever have to be treated for this condition. However, an experienced doctor can help determine many of your triggers and once these are identified you may have less reactions over time. Some people do require a lifetime of medication/supplementation to keep themselves from reacting. Everyone is uniquely different.

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      • So happy to find this thread- I too have developed MCAS post Covid and am in the process of diagnostics and treatment planning.

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  10. Hi Bethand Dr Hoffman
    Very I terested to hear the answer to this as my MCAS also started after COVID, Ian struggling as yourself to find a way forward

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  11. Thanks for the excellent and succinct information. My symptoms respond best to NSAIDS. Have you noted this in other patients?

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    • Some patients do respond well to NSAIDS. One can presume the inflammatory mediator released by the mast cells would be prostaglandins. NSAIDS are antiprostaglandins, hence the positive response to NSAIDS.

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