UPDATE: for more on methylation and how it relates to histamine intolerance, mast cell activation and mastocytosis, don’t miss my interview with Dr Ben Lynch of MTHFR.net – sign up to my mailing list!
There’s little in life more frightening than having a sick child. Make it an illness that no one has ever heard of, that has little treatment beyond over the counter medications, and you’re entering a vortex of fear. Enter the warrior moms.
Today’s guest poster has devoted her life to helping heal her son’s severe mast cell activation disorder. Please meet Tiffany Blackden…
We’ve been living in this crazy world of histamine and hyperactive mast cells now for several years. Our son will be turning 5 this month, and he’s been our docent, as we gather our education in the museum of mast cell madness. He’s shared with us all the nuances of mast cell activation disorder, which may have been missed, had it been anyone other than our charming little guy guiding us. This disorder has both opened up our world like new understandings around family member’s health histories, and restricted it as well, particularly where social outings and nutrition comes in.
For anyone going through mast cell activation disorder, or histamine intolerance, you are aware that the symptoms can affect *any* of your body systems, many of them all at once. This is because histamine and other chemicals housed in the mast cells don’t stay isolated, but travel throughout the body.
In our world, we have experienced symptoms in some body systems more dramatically than others. Skin presentations from foods, friction, contact with triggers could cause swelling, hives, dermatographia as well as other persistent skin lesions and eczema. We’ve had years with terrible stomachaches, headaches, dizziness, vomiting, leg pain, neurological symptoms and anaphylaxis. The neurological symptoms have been mostly tics or behavioral shifts from exposure to triggers, or being overloaded with chemicals he was exposed to outside our home. In the last two years, we’ve been able to calm his body, get some vital nutrients on board, and lower his overall histamine burden.
I just noticed some of your ears perked up…’What do you mean lower his overall histamine burden?’ I go into more detail in this presentation (http://www.slideshare.net/tiffanyblackden/working-with-histamine-overload-april-2013-20158082 ) I’ve shared at Mastocytosis Society conferences, but it has a LOT to do with supporting the liver. The liver support I am talking about in particular is supporting methylation and sulfation in the body that assist in clearing chemicals, both exogenous (those entering our body from our environment) and endogenous chemicals (those made by the body).
Methylation. I first heard this term over a year ago, several years after we were experiencing the ‘joy’ of mast cell madness. I had floundered around in the world of ‘food allergy mom’ before arriving at mast cell activation syndrome. Medical professionals kept making me believe that the only trouble was something that was going INTO my son that was causing the problems…but now I realize that his acute presentation was very closely linked to what was NOT coming OUT.
The magic of genetics has given us a way for us to understand some deficiencies in enzymes in our family. As we’ve studied methylation as it affects mast cell activation, we’ve also come to a greater understanding of how lifestyle, diet, environmental exposures can all cause FUNCTIONAL deficiencies that can look exactly like genetic disorders.
If you are looking into genetics and enzymes related to high histamine levels in the body, you may have stumbled over some of these: MTHFR, MAO A, DAO1, ABP1, HNMT…and more! Some of those affect enzymes that are responsible for histamine degradation, and some are in the methylation cycle. These and many more genes are involved in the body’s ability to excrete chemicals from the body, INCLUDING histamine. There are some very detailed warnings for supplements, medications and more, for those of us who have some of these genetic mutations (I like the term variant better, but you’ll see mutation in many texts as you dive into the ocean of genetics) in the methylation cycle. Some of us need to have activated forms of vitamins, because our bodies can’t convert nutrients as simple as folic acid. Some of us need to avoid high sulphur foods or medications. Then, many of us need to lighten up the already heavy toxic load on our livers. Something to be aware of, though, is there is no way there can be a ONE SIZE FITS ALL solution to chronic issues like this, because our individual genetics vary SO much! For instance, Epsom salt baths are really helpful for many people (transdermal absorption of magnesium sulfate can help with a number of health issues, especially supporting sulfation, a Phase II liver detox process!), but for people with certain CBS gene mutations, they can actually drain some of the vital nutrients from the body, if overused.
Our goal in helping our little guy was to lower the histamine we were putting IN his body,reduce the amount of the chemicals that were competing for the same pathway out, and lighten up the functional bottleneck that was backing up histamine in his body. Part of the reason this was happening was his genetic hiccups in the methylation cycle inhibit some of the enzymes that act as the ‘bouncers’. The liver secretes these molecules in order to escort the chemicals you don’t want in your body anymore to the door…or the toilet, as the case may be.
Methylation does more than just excrete the bad stuff, it is also a process that turns genes on and off, supplies active enzymes that manage important metabolic functions in the body and more. The big gene that is being talked about in our methylation circles is MTHFR. These are a few resources, if you want to learn a little more about it. http://babyfoodsteps.wordpress.com/2013/03/24/snips-about-snps-mthfr/ http://www.MTHFR.net and http://www.mthfrsupport.com/
As you work to find more pieces to your particular health puzzle, keep looking for answers. Each week we have new insights and information that helps us connect dots. It’s painstaking work, but worth it each time we figure out something that helps our children.
Tiffany Blackden is a warrior mom working to find answers for her children about health problems that baffle most doctors. She stresses that moms need to take care of themselves, find support, trust their intuition about their children’s health, and be very particular about the medical professionals her family hires. Tiffany’s family page on facebook, where she posts medical information and research she is discovering is: http://www.facebook.com/blackdenfamily. She is also building out a new blog about her experience with mast cell challenges here: http://www.mastcellmadness.com Connect with her on facebook, Twitter or LinkedIn.