Why Should You Care About Mast Cell Activation Disorder?

Why Should You Care About Mast Cell Activation Disorder?

Why Should You Care About Mast Cell Activation Disorder?

I absolutely LOVE it when things work the way they were supposed to.  I know what to expect.  There are no surprises (I do not like surprises one bit!).  I am prepared.  Everyone gets what they are expecting to get.  Life is lovely and the birds are chirping.  However, when things don’t work like they are supposed to, there is confusion.  There is disappointment, not to mention a fair amount of grumpiness.

This is the case with the immune system in our bodies.  We can learn in school, we can read in text books, we can read on the internet, what it is made up of and what is designed to do.  Sometimes, though, it goes ROGUE.  No one is sure why. I have read some that think it is because of faulty genetics passed down from parents or grandparents (ie: if a parent had allergies, children are much more likely to have allergies).  Some think our immune systems deciding to not play by the rules could be spurred on by a bacterial infection or a virus.  Some researchers believe it is because of exposure to a toxin like mold or chemicals.  Maybe they all are right.  What I do know, is living in a body with a dysregulated immune system is like living inside a video game you can’t escape.  Let’s talk about Mast Cells.  They are the white blood cell master regulators of the immune system. The Mafia Bosses, if you will.  They say “jump” and everyone says “how high?”  Let’s talk about what happens in something called Mast Cell Activation Disorder.

In Mast Cell Activation Disorder (aka: MCAD), these immune cells started off as good guys, as honorable, hardworking military Sergeants, let’s say.   They are thought to be in literally EVERY PART of the body, calling other parts of the immune system into action when the need arises, by releasing chemicals called “mediators.”  These chemicals signal the other parts of the immune system to get off their backsides and get to work.  They help the body defend against diseases and they help with wound healing.  They love to be anywhere you have mucous like the lungs, mouth, digestive tract, nose, etc.  They are in blood vessels, nerves and skin tissue. And they are filled with specific chemicals designed to call specific immune system helpers.  That sounds great, right?  Fight disease.  Aide in wound healing.  But…

What if these disciplined, purposeful Sergeants of the immune system went cuckoo?  What if, instead of being able to actually recognize the enemy, they saw an enemy in benign things?  What if everything they looked at, looked like an enemy?  In response to this schizophrenia of the mast cell brain, this once helpful and reliable cell begins shooting it’s chemicals when it really shouldn’t.  And when Mast Cells are mad, they are mad.  They might start shooting at certain, random things, like when you eat chicken or oatmeal.  It could draw it’s guns at bath water that is too warm or scented, clean laundry.  It makes no sense as to why these things are bothersome to your body, but now, all of a sudden, they are.

Sometimes, Mafia Mast Cells stick to an organ or two in the body, being ticked, shooting their guns and calling in troops to help fight something that was never there to cause harm in the first place.  But sometimes Mast Cells go completely nutso.  They are out-of-their minds furious, and they send a memo to the Mast Cells all over the body to share in their fury.  Now you have irrational white blood cells over-reacting all over the body!  The ones in the skin are ticked and they cause hives, a “fun” little trick called Dermatographic Urticaria (being able to write on the skin and have it rise up in welts), as well as swelling, flushing, random itching and burning sensations.  The ones in the GI tract are grumpy and now, it won’t let any food be eaten without a reaction of nausea, vomiting, reflux, stomach pain and runny stools.  And to add insult to injury, the Mast Cells in the stomach are mad if you don’t eat, either. You are darned if you do and darned if you don’t.    The ones in the brain are mad, causing headaches and brain fog, anxiety, depression and fatigue.   That’s not all!  Mast Cells can cause a drop in blood pressure, high blood pressure, fatigue, achiness, heart palpitations, wheezing and shortness of breath.  And when it gets too bad, it turns into anaphylaxis.

Triggers for causing Mast Cells to freak out (the technical term is degranulation), can be vast and random.  They include medications, foods, supplements, hormones, stressors (physical and emotional), cold, heat, pressure, odors, chemicals, insect bites, pollen, pets and exercise.  If the correct medications aren’t in place or if the Mast Cells are not responding to the meds, anaphylaxis is not uncommon.

There are other illnesses and disorders that are frequently found with MCAD.  Those include:

  1.  Allergies
  2. Asthma
  3. Autism
  4. Autoimmune disorders
  5. Celiac disease
  6. Eosinophilic disorders
  7. Fibromyalgia
  8. Food allergies and intolerances
  9. Reflux
  10. Endometriosis
  11. Interstitial Cystitis
  12. IBS
  13. IBD
  14. Migraines
  15. Mood Disorders
  16. Multiple Chemical Sensitivities
  17. POTS (postural orthostatic hypotension)
  18. EDS (Ehlers-Danlos Syndrome)

What if there was virtually nothing you could eat without having to run to the bathroom?  What if during puberty or your menstrual cycle, you could not even leave your house because the pollen, exhaust fumes and other people’s perfume cause your throat and your eyes to swell? Imagine, having an anaphylactic reaction to dryer sheets or walking to the car on a winter’s day!  Crazy, isn’t it?! The situations that can cause reactions for people with Mast Cell Activation disorder is endless.

One can see how anxiety and depression are common with this immune dysregulation.  There jillions of triggers for symptoms, a handful of medicines that MIGHT work and even fewer doctors who know anything about Mast Cell Activation Disorder.  It truly is a Rare Disorder.  With MCAD, Epi pens are your security blanket and leaving your house is your nemesis. Weather is an adversary, as well as are seasons and sunshine.   You have to eat to live, and yet eating many times makes you wish you were dead.   There is no predicting what your body will do, but what you can count on is the fact that it will be unpredictable.  It can strain relationships and cause isolation.  Fear and anxiety are constant battles because of the radical way the body reacts, but the funny/not funny part of this is, it is best to avoid stress so as to not bring on a reaction.  And chances are great that you have one or more (usually much more) of the other disorders associated with this immune disorder.

But this is how life feels when Mast Cells are behaving badly, always walking on eggshells, hoping to avoid catastrophe.  I guess the cool thing about it is, now you know what it feels like to have a video game being played in your body.  Unfortunately, rarely are you the winner.

 

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50 Comments
  • Peg says:

    Excellent read for newbies or friends and families looking for a brief overview

    • sarkfam4@gmail.com says:

      Yes, Peg! That was my desire! To many Mast Cell issues understandable for new people and to family and friends. Thank you so much for taking time out of your day to comment. Blessings to you!

    • Ginny says:

      Thanks for this excellent summary. My sister has this disease and I have seen her live through hell. But she tries to stay positive. Hey can uou write a summary of treatments?

      • sarkfam4@gmail.com says:

        Three cheers for you, Ginny. Thank you for taking the time to learn about what your sister goes through and all the support I am sure that you give her. And I love your idea for another Mast Cell blog post! Thank you for sharing your thoughts with me. Hugs to you!

    • Lynne says:

      Beautifully expressed! My Mast Cell Activation life in nutshell. You’ve done what I couldn’t do. I thank you!

      • sarkfam4@gmail.com says:

        Thank you for your kind words, Lynne. Maybe this post can make it a bit easier to for those around you to finally “get” you! Sending hugs your way!

  • Georgette says:

    Great article!! Thanks for making it so easy to understand!!

    • sarkfam4@gmail.com says:

      Thank you, Georgette! That is what I was hoping for (and maybe a chuckle or two along the way:) Thanks for stopping by! Hugs to you!

  • Kathy says:

    That is a great easy description for a very complex disorder,thank you

    • sarkfam4@gmail.com says:

      Thank you for your kind words, Kathy! Really, I think that I just gave away the fact that I have a kindergarten brain trapped in a 40 something body! Lol!

  • Sequoia says:

    Fabulously written…actually going to show this to my dr tomorrow….thank you

    • sarkfam4@gmail.com says:

      Thank you so much for taking the time to leave this encouragement for me! I so hope it helps at the doctor. If you have time, let me know how your appointment goes. Hugs to you!

  • Kristy says:

    A wonderfully written article that I have saved and just shared with my family and friends who have shown interest and concern but struggle to fully understand what I go through. Thank you for writing such an engaging, realistic, informative and relatable article about MCAD.

    • sarkfam4@gmail.com says:

      Kristy, thank you so much for your encouragement. MCAD is so complex and diverse, I needed to simplify it in my head. I am blessed to think it could help someone else. Hugs!

  • Diana says:

    Thanks for writing this it helped me to better understand what my daughter deals with than technical medical things I have read about MCAD .

    • sarkfam4@gmail.com says:

      Diana, I am so glad you took the time to leave me this comment! Blessings to you and your daughter!

  • Janan says:

    I’ve been living with this crazy disorder for years, and finally know what to call it. Thanks for sharing your knowledge and bringing it to a level people can understand. Live well!

    • sarkfam4@gmail.com says:

      There is freedom in knowing the name of the monster you are battling, isn’t there? Thanks for stopping by!

  • Billie phillips says:

    Yes, your article is very true. I was in the original sstudy at Vanderbilt in 1980. I was blessed to be able to try many combinations of medicines they were experimenting with to come up with what would work for me . I have been able to live a pretty normal life for 37 years. As you said you wonder every time you wonder what will happen if you do any of the things that might trigger an attack. I did stop breathing 2 times in my 37 years from an outbreak, but thanks to my husband and children they knew what to do.

    • sarkfam4@gmail.com says:

      Mast Cell definitely gives people a “living-on-the-edge” experience, doesn’t it? Thank you for taking the time to comment, Billie. Hugs to you!

  • Pam says:

    They pull their guns on anything!! Truth right there!! Love it!

    • sarkfam4@gmail.com says:

      Pam, thank you for commenting and for finding value in my dopey humor:) Hoping you have a great, reaction-free weekend!

  • Cheryl says:

    This is a struggle everyday not to give up. I never know what each day will bring.. thank you so much for putting into words what each one of is dealing with every day of youe lives..

    • sarkfam4@gmail.com says:

      Cheryl, I am so thankful that I can make this even a tiny bit easier for those in the Mast Cell community. Thank you for the time you took to respond. Hugs to you!

  • Heidi says:

    This is such a great description, makes it so much easier to understand!!

    • sarkfam4@gmail.com says:

      Yeah!!! That was what I was hoping for, Heidi. I am so thankful you took the time to comment. Hugs!

  • Kelly says:

    I feel like I have a much clearer understanding. Thanks! I will pray for you even more!

  • Pat says:

    This was an easily understandable description of this disease.

    • sarkfam4@gmail.com says:

      I am so glad, Pat. That was what I was hoping for! Thanks for your comment!

  • Peg says:

    OMG – thank you for expressing this for all of us! It is exhausting to explain over and over again.

    • sarkfam4@gmail.com says:

      I am so glad to help, Peg! Mast Cell is particularly hard to explain, I feel, because it can be so varied. Thank you for stopping by! Hugs to you!

  • Helen says:

    This is one of the best descriptions I have read in a long time. I think it will help patients and family members. I especially think it will help school personnel many of whom can’t seem to understand that in fact so many things are happening at one time. Thank you, Thank you.

    • sarkfam4@gmail.com says:

      Helen, you have made my day! I so hope this article can bring a little order out of the chaos that is Mast Cell. Hugs to you!

  • Suzan says:

    Very well written and easy for friends and relatives to understand. I have been dealing with this for almost a year. It has affected every aspect of my life. I am going to print this (if I may) and carry it with me everywhere. Most of the docs, ER personnel, nurses, need to know this information. Thank you!

    • sarkfam4@gmail.com says:

      Thank you for your kind words, Suzan! You can definitely print it off and use it to help others understand. I am dreaming of a day when medical personnel don’t like at us like we have 10 heads! Well, I can dream, can’t I? Lol.

  • Caroline whelan says:

    Both my daughters have eds 3 , pots, and suspected mass cell activation disorder. Interesting read

    • sarkfam4@gmail.com says:

      Caroline, I am so glad you stopped by! Thank you for taking the time to comment.

  • well put !!
    I (a hashimotos mammy and an eds daughter) have become so sick of reading about this protocol and take this product and that vitamin and don’t look that way look this way instead ,i gave up and started to say, “Hi friends of my immune system”. I love ye and i know you are laying down your guns and coming on board to help me achieve optimum health. in other words i tune in to loving myself, as i am today and believing in treating my mind heart and body with respect and deep listening. From this point i get guided to what works for me. loads of compassion towards yourself is key and it has a beautiful effect on my cells and the love and care also has become extended to my family and my community. Loving you leads to genuine love and peace and health
    an oirish mammy

    • sarkfam4@gmail.com says:

      I agree! One thing I am always reminding myself and others is to be kind to myself and others. Graciousness and compassion can be wonderfully healing! Thank you so much for taking the time to comment.

  • Judy says:

    I had no idea there was even such a thing. My heart goes out to you and other people who have to deal with this on a daily basis. Thank you for sharing and enlightening “the rest of us”. Well written. Good luck to you. I hope you find a relatively easy journey.

    • sarkfam4@gmail.com says:

      Judy, I am so thankful for you! Anyone who doesn’t have this disorder and yet takes the time to read and learn so you can better understand others you may come across–FABULOUS! Thank you for being you! Sending you lots of hugs today!

  • Paul Moore says:

    Thank you for taking time to write this thorough article. You are right it can be helpful to family and friends to better understand why we have disappeared from life as We once knew it. I have posted it on my Twitter and Facebook feeds.
    Keep Up With Your Good Work
    Don’t Ever Stop

    • sarkfam4@gmail.com says:

      Thank you, Paul, for taking the time from the important things in your life to comment. And it is the desire of my heart, that when you have shared it with others, they can better understand and help you when need be. The road of being medically complicated is not an easy one, but we can lighten the load if we help each other through. Keep fighting the good fight!

  • Alison says:

    I enjoyed the article. I have been looking for something like this to forward on to family and friends. I only wish in your list of diseases to rule out you had included Neuroendocrine Tumors (NETs) as that is a disease that is far to often overlooked and one that must be ruled out as clearly as is possible.
    Thank you for this!

    • sarkfam4@gmail.com says:

      Alison, thank you for your comment. In truth, I haven’t come across Neuroendocrine tumors in our Mast Cell journey. You have given me something new to research:) Hugs to you!

  • Alison says:

    I enjoyed the article. I have been looking for something like this to forward on to family and friends. I only wish in your list of diseases to rule out you had included Neuroendocrine Tumors (NETs) as that is a disease that is far to often overlooked and one that must be ruled out as clearly as is possible.
    Thank you for this!

    • sarkfam4@gmail.com says:

      A secret about me: I love researching medical things! Alison, you have given me the next thing to study! Thank you for your comment! Hugs to you!

  • Thanks for the great intro to Mast Cell Activation Syndrome. As a doctor who recognizes and treats MCAS, it’s been very satisfying to finally be able to help patients who have struggled for years.

    • sarkfam4@gmail.com says:

      Dr. Zaphiris, thank you for taking the time to read and comment! So thankful for you and the handful (small, very small) of doctors who treat this disorder with credibility and caring! Wish I could clone about 10,000 more!!!

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