Living with Mast Cell Activation Syndrome (MCAS) usually results in widespread mast cell activation syndrome 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 and reduce 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.
Mast Cell Activation Syndrome Diet
Another great resource for dealing with histamine and MCAS using a mast cell activation syndrome diet and exercise is through Yasmina Ykelestam at Healing Histamine.
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Dr. Bruce Hoffman, MSc, MBChB, FAARM, IFMCP is a Calgary-based Integrative and Functional medicine practitioner. He is the medical director at the Hoffman Centre for Integrative Medicine and The Brain Centre of Alberta specializing in complex medical conditions. He was born in South Africa and obtained his medical degree from the University of Cape Town. He is a certified Functional Medicine Practitioner (IFM), is board certified with a fellowship in anti-aging (hormones) and regenerative medicine (A4M), a certified Shoemaker Mold Treatment Protocol Practitioner (CIRS) and ILADS trained in the treatment of Lyme disease and co-infections. He is the co-author of a recent paper published by Dr. Afrin’s group: Diagnosis of mast cell activation syndrome: a global “consensus-2”. Read more about Dr. Bruce Hoffman.
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).
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.
Check into limbic system retraining
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.
Interested
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
Jessica
You should see Dr Nancy Klimas at Nova Southeastern University. She is awesome and has helped me so much with my mast cell disorder.
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.
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.
Hi, I would love your recipe for sweet potatoe and rice rotis! Thank you,
Shelly
I would like it please
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.
Thank you for sharing!
Thank you for th article doctor Hoffman. I’m looking for all the help I can get. I just got diagnosed and have been treating for the last 6 months and. It’s been a tough road.
I am glad you finally received a proper diagnosis and wish you the best on healing.
I would love the recipe for the shake!!!
Here you are: https://hoffmancentre.com/recipe-power-shake/
Interested in the recipe please, sweet potatoes she really loves.
We have a delicious Sweet Potato Apple Oatmeal recipe available here. You should try it out!
Can I please have to recipe? I don’t even know what that is but with my daughter limited diet I’m always looking for ideas.
Please click here to access information on the low-histamine diet.
I went from 158 to 117. I was down to 11 food items I could eat. I had a wonderful dietitian who understood histamine and mast cells. She slowly increased my foods and recommended DNRS which retrains the lymbic system. I am doing so much better I now need to loose weight. I feel much better.
That’s wonderful news Hollie!
Does your Dr do virtual appointments? I feel like im fading away.
Sarah, please get in contact with our office here.
Hi
Could you please forward me the recipe for the sweet potato and rice flour roti
Thank you so much 🥰
Click here for the recipe! Enjoy!
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
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.
Yes there is a leading doctor in Florida.
She has two offices at Nova Southeastern University. Her name is Nancy Klimas. You can google her name and you will see. She has helped me so much with my mast cell disorder. She is number 1. There is also another doctor with her and her name is Dr. Irma Rey. Same place. She is also awesome!! I highly recommend either doctor.
Try NAET treatment
Website : http://www.NAET.com
I’m so sorry. I’ve lost that much also. How are you. Can u help me
i go to allergist in plantation florida and do xolair shot for mcad its great
Hi Valerie. My name is Tina and I just came upon this site. I am also in the Brandon/ Tampa area and would like to know if you have found a doctor locally? I feel desperate.
Have you been tested for Lyme Disease? Something set off you Mast Cell. In me it was Lyme.
https://www.st-george-hospital.com/
Very informative and specific advice is great!
Thank you!
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 .
What foods can I eat to help clear up my gut. So sick right now ,been to ER, 25 times since nov2019.
Hi Pat. Please contact our clinic using our contact page or you can give us a call at 403-206-2333.
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 ????????
Thank you! I am glad you were able to find information that may help you seek alternatives.
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 ?
how did you make out?
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.
Have u heard anything from bone marrow biopsy?
It is not unusual to do a bone marrow biopsy with elevated tryptase. They want to rule out Mastocytosis and Mast Cell Leukemia.
I underwent a bone marrow biopsy after repeated anaphylaxis and elevated tryptase. I was negative for Mastocytosis and Mast Cell Leukemia. So, I was diagnosed with MCAS. Best wishes.
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.
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.
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.
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.
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
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.
Thank you Dr. Hoffman
It’s life saving.
Making life easier with solutions helps people live their lives to the fullest, that is our goal!
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.
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.
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
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.
So happy to find this thread- I too have developed MCAS post Covid and am in the process of diagnostics and treatment planning.
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
Thanks for the excellent and succinct information. My symptoms respond best to NSAIDS. Have you noted this in other patients?
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.
Do you know a qualified doctor in the Orlando, Florida area for Histamine Intolerance and MCAS??? My symptoms have gradually gotten worse a 33 year period. I am following the diet but with not to much success. I know I need the various supplements to get better but would rather have a doctor that has knowledge in my area to guide me. About 22 years ago went to homeopathic doctor in my area and she had me on numerous substances but not specifically for the MCAS protical. she tested me for 3 months and changed various supplements but on the forth month the expense was getting heavy so I did not return and continued taking the supplements and all of a sudden came down with horrible bronchitis and doctor had to also give me prednisone to stop wheezing in my lungs. In 2004 got horrible ear infection that took 3 months to get rid of. But other than that have really not been sick at all but dealt with laundry list of symptoms. I did get Epstein Barr virus in 1988 and 2020 after a Tetinis shot. I would love for you to give me a referal on finding good doctor close to Central Florida. Thank you very much.
Unfortunately I do not have access to what doctors are practicing in which states. I hope Dr Afrin and the group we belong to will put together such a list in the not too distant future
Mark ~
The Mayo Clinic in Jacksonville is probably closest to you. I see Dr. Alexei Gonzalez Estrada (allergist) and Dr. Candido Rivera (hematologist). They provided me with my MCAS diagnosis after suffering from 6 episodes of near death anaphylaxis and 3 years of 9 specialists working me up at Emory in Atlanta. I am now on an excellent treatment plan and (knock on wood) haven’t had a reaction since Feb 2020. They are worth the drive!!! I drove from Atlanta for their expertise.
Barbara
I am having severe MCAS symptoms revolving around muscle in gi tract and pelvic floor. I am 65 years old. I have been having reactions to both food and environment since infancy. During my 20’s I was told I had high histamine levels. Stress, food, environment toxins in bedding, furniture, carpeting are all triggering severe reactions. Have barely slept for months. Have constant tremors and palpitations, fluctuations on blood pressure and heart rate. My doctors think I am crazy. Please help.
Hi Sally. Please give our office a call at (403) 206-2333 or email info@hoffmancentre.com.
Struggling with MCAS after 2 years of on and of SiBO. Oddly, my stomach seldom hurts nor do I bloat but instead get sharp stabbing pains in my knees especially. Have you worked with anyone else with this odd condition. I have a wonderful doctor who found the MCAS after 10 years at least. I am on LDN and antihisitmines, Vit C,Quercetin, and Oregano.
The pain is so bad that I have to shuffle my feet to walk as of the severe knee pain. Any advice?
Mast cells release prostaglandins as well as 1000 other mediators of inflammation. Prostaglandins cause pain. One needs to find out other triggers of mast cells as many variables are involved. If interested, you can make an appointment at the clinic: please email info@hoffmancentre.com
None of the information mentions severe joint pain from MCAS, but I know that they are connected. When I ate fish, my knees felt like glass insides. Sometimes the histamines act up and cause shoulder, hip, and lower back pain. I was even prescribed medical cannabis and CBD oil by a specialist which helped a lot, but as it wore off the severe knee and joint pain returned. Does cannabis aggravate histamines?
No, it has a positive effect on down regulating histamine receptors. We need to find out what mast cells are being upregulated as many causes are possible.
My husband was diagnosed with mastocytosis in December of last year (2020)
Could someone please very simply tell me foods that are a definite no-no.
I’m at wits end and not knowing for sure is hindering his health I fear.
He is currently going through chemotherapy to help, found out today that he needs another blood transfusion.
That will make 19 transfusions since January 2021.
Please to make it simple for me the basics would help greatly.
Thanks in advance!
A comprehensive guide to a low histamine diet can be found here.
I have many of the symptoms described by others. Regular shaking, sleep apnea which triggers tachycardia, hives, random hoarseness, feeling like my throat closes, a feeling of always being on alert, bloating, stomach pain. Histamine plasma came back very elevated but tryptase is in Normal range. Dr said it’s not mast cell. Any other tests I should discuss with him?
Here is a list of tests that you can suggest to your doctor. Diagnosing MCAS – Ask Your Doctor for Lab Work