Living with Mast Cell Activation

Living with Mast Cell Activation Disorder tests my scientific mind every day.

I have to, scientifically, determine the source of my mast cell symptoms – getting to know how my body reacts to its environment, how to mitigate those reactions, and how to live my life to its fullest.

You have to be very honest and methodical about approaching food and people when you live with a mast cell disorder.

These are the things I have to bear in mind every single day….

 

Will the sunlight make me sick?

When my system is really working overtime, I get mast cell symptoms from exposure to sunlight.  This is something that has happened to me on and off over the years.  It was bad this summer – seems to be getting better as we move out of the high allergy/pollen season, however 🙂  I have to bring a light white shirt with me when I drive, to put it over my arms when the sun is beating on them, wear a hat, stay in the shade.

 

Will the food make me sick?

Food triggers are a huge part of mast cell activation disorder.  Combined with MCAD triggers, I also have very real allergies to some things found in foods.  My allergies were all confirmed via patch testing and… well, explain a lot.  I am allergic to a chemical called THIURAM which is in all herbicides, pesticides, anti-fungals, latex and most plastics, rubbers, adhesives, and polymers.  When I do not eat organic, I get FOGGY in the head from the allergens – can’t think right, get spaced out, then after a bit my blood pressure drops, my lips turn blue, I stumble around, etc.  Someone noticed this happen to me, recently, after I ate a gluten-free pizza with Romano cheese on it (not organic, and aged cheese).  But hey, I wanted to go out to eat at a restaurant.  This is what I have to be aware will happen afterwards.  Ya see?

 

I am also allergic to aspergillus.  Unfortunately, this mildew is used to make cheap citric acid.  You try avoiding citric acid.  It is in everything. I have to severely limit my exposure – and therefore end up eliminating nearly all bottled beverages and packaged foods.

 

SO, as you can understand,  I generally make my own food – in order to avoid the above situation!  On days when I am being social and eating out, I eat a very strict diet for a few days before hand and a few days after.  This reduces the load on my system and allows me to eat more of the “bad” food before the nasty symptoms start happening.  This is how I can be social.

 

As for my own food – I eat a gluten-free, organic, low histamine, low sugar, and high salt diet (because I have the postural orthostatic tachycardia syndrome).  A gluten-free, organic, low histamine diet IS MY MAINSTAY.

 

Here are some links to other folks who have found FOOD CHOICES to be KEY to MANAGING THEIR CONDITIONS AND PAIN:

  • The Low Histamine Chef
  • Nutritional Strategies and Stress Management for Managing MCAS
  • Low Histamine Diet as a Stepping Stone to a Personalized low trigger diet
  • Nutrition and Low histamine diets from The Mastocytosis Society
    • WHAT IS A LOW HISTAMINE DIET?

      A low histamine diet restricts foods that are potentially high in histamine and/or may lead to histamine release. Histamine is one of several inflammatory chemicals released from mast cells (and other immune cells) and is responsible for many of the troubling mast cell disease symptoms. Histamine can be absorbed into the body from food. Food with very high levels of histamine can lead histamine poisoning (a type of food poisoning that is common with improperly handled fish). Some people may have lower levels of the enzymes which break down food histamine, and may be more likely to absorb histamine from food (histamine intolerance). Histamine forms during fermentation and spoilage. It may also be present in certain fruits and vegetables. However, there has been very little research to accurately measure the amount of histamine in food. A second part to the theory is that certain foods may trigger mast cells to release histamine. There are long lists of histamine releasing foods on the internet, but these lists are based on anecdotal reports. Since there is so much individual variation, and very little concrete information, the low histamine diet is a general guideline that requires experimentation, rather than a diet that should be followed exactly. With the help of a registered dietitian, an elimination diet based on your personal experience with symptoms is a good course of action.

      WILL DIETARY CHANGES COMPLETELY CONTROL MY SYMPTOMS?

      While improving your diet by eliminating triggers and eating wholesome, balanced meals can help to decrease your symptoms, there is no cure-all for mast cell disease.

 

SUPPLEMENTS?

Yes.  But I have to be super careful because I have bad reactions to many forms of vitamins and I have to try to source organic versions.  Example, when I had a severe B12 deficiency, my doc wanted me to get shots daily.  I am allergic to the inactive ingredients in the shot… so I found an organic sublingual B12 supplement with no additives instead.  Was able to restore my B12 levels in a couple of weeks without the shots.

I have a friend with mast cell who took the B12 shots about a month later.  She broke out in severe hives and then had a bad mast cell/EDS/POTS flare.    Sooo, doing the research and knowing your body is key with mast cell.

 

What do I need to have with me to go out?

  • Benadryl.
  • Cromolyn Sodium – mast cell stabilizer/anti-inflammatory I have to take 4 times a day.
  • Zyrtec
  • Zantac
  • Tylenol
  • water
  • salt (in case the blood pressure drops)
  • allergy mask (life saver – especially when I have to walk through grass people just cut/are cutting or around elderly or young men who wear tons of fragrance lol)
  • something to stay warm (temperature drops with the blood pressure)
  • soap (because I’m allergic to fragrance and most public restrooms have that pink liquid soap that makes my skin turn red and hurt!)

 

How do I care for my skin?  How do I clean my clothing, house, etc?

I am actually quite proud of the solutions I have found through a few years of trial and error!  I cannot use detergents, fragrance, most chemicals – as I immediately start with an asthma reaction, then sinus, then itching, rash and hives, then unable to think, excessive sweating and inability to control temperature, then blood pressure drops AND SO DO I!  I also CANNOT USE A DRYER THAT HAS BEEN USED WITH DRYER SHEETS.  That stuff leaves quite a residue… which destroys me.

SOOO, these are my saviors:

  • SPRAY CLEANER – KITCHEN, GLASS, ALL PURPOSE
    • organic white vinegar with purified water in a spray bottle.  Sometimes I add some organic castile soap to make it more powerful.
  • BATHROOM CLEANER
    • vinegar solution above for the glass/shiny surfaces, bleach-water solution in spray bottle for toilet, tub, and floor.
  • DISHWASHING LIQUID
    • 50% organic vegetable glycerin, 50% castile soap (and a touch of raw honey for antibacterial qualities)
  • HAND AND BODY SOAP
  • SHAMPOO
    • that wonderful organic coconut oil soap works on my face, body, and hair beautifully!
  • CONDITIONER
    • either organic vegetable glycerin with organic essential oils
    • OR organic FRACTIONATED coconut oil with organic essential oils
  • BODY MOISTURIZER
    • organic fractionated coconut oil (aka MCT oil) with my own organic essential oils.  I love frankinscence for its anti-inflammatory and pain relieving qualities, but most people do NOT like this smell (so I only use it at night!).  Otherwise I use lavender and sweet orange.  So soothing!
  • LAUNDRY DETERGENT
    • BEST EVER – MOLLY’S SUDS plus vinegar and castile soap
    • Add some essential oil during the rinse cycle 🙂
    • HANG DRY (I have to share dryers with people in the building… sooo it is filled with dryer sheet stuff I cannot tolerate).

 

What do I need to do to be with other people?

Ahhh, the social challenges!  First, you need to be with people who respect when you ask them not to wear extra fragrance/cologne.  If the person “forgets” and/or says things like “I don’t smell anything” while looking at you funny, it is not going to be a comfortable relationship!  So, I have to ask that before I meet someone new (and remind family members who cannot remember!).  Second, I have to be aware of how much their clothing contains fragrance.  Some folks have heavy fabric softener and/or dryer sheet smell on them.  This is a huge mast cell trigger for me – cannot be near them!  If it is essential I am near them, I wear my allergy mask while explaining about mast cell disease – and then see if they do anything differently the next time we are together.

 

You learn quite a bit about other people by having this condition!

 

Ideal – a friend who either is sensitive to fragrance/chemicals already and so already limits their own exposure.  Or, someone who cares about me enough to launder their clothes without detergent and/or abstain from applying smelly lotion/sprays before seeing me.  Had an ex who refused as he didn’t believe my condition was real… there is a reason he is an ex.  😉

 

I cannot tolerate being near smokers.  Nothing I can do but wear my mask near them.  I know their addiction overpowers their ability to care for their own health, I cannot expect them to care about mine.    SOOOO, A LOT OF PATIENCE AND AN ATTITUDE OF “LET’S LEARN ABOUT DIFFERENT PEOPLE BY HOW THEY REACT TO ME” is how I live with mast cell disease around other people!