Autism PREVENTION part 4: Mast Cell Activation Disorders, Guest Post by Tiffany Blackden

Editor’s note- I am so honored to feature the first Guest Blog Post on Babyfoodsteps.com and even more honored to introduce Tiffany Blackden as our first guest blogger. Tiffany and I met through on-line connections and then had the privledge to meet in person last summer. Tiffany is incredibly knowledgeable about mast cell biochemistry as well as wholistic approaches to healing, which is why I asked her to post about this topic, our 4th and final post in our April 2013 series about Autism PREVENTION. Please join me in thanking Tiffany and welcoming her to babyfoodsteps!

Autism Prevention

When Kristi asked me to guest blog for her about connections with mast cells and autism, I was honored she would ask me. I respect her greatly for her work in educating parents and families about health topics. It’s just amazing how, through these difficult health journeys, us moms get connected with other mothers who are beating down new pathways for their own children. I am so grateful that we have crossed paths, and can share information with each other about our journeys with our children’s health challenges.

There are many speculations as to what leads to the development of autism. Although my son does not have autism, he does have mast cell activation syndrome, which is starting to be linked more and more with the pathophysiology of autism. I’ve found myself in groups with other moms of children with autism and mitochondrial dysfunction many times over the last two years. This is because many of my son’s lab markers are remarkably similar to children with both of these disorders. He has numerous food allergies and sensitivities (some not evident on blood tests as IgE allergies), low antioxidant and other nutrient markers, issues with digestion and absorption, and more. We have also found out in the last six months, that many of my children’s genetic variants match up with these children as well.

I worked with many children with autism in my early twenties, and my brother was diagnosed with PDD-NOS as a child (this was before the DSM-IV had created a category for Aspberger’s, or we believe he would have fallen under that diagnosis). Due to these experiences and family health history, we have been extremely careful with exposing our children to excessive amounts of biochemistry altering chemicals. We knew we possibly had a genetic predisposition to a biochemical process that could cause some neurological difficulties, and as it turns out, we do.

Almost two years ago, I attended a mast cell disorders conference where a leading mast cell researcher, Dr. Theoharis Theoharides, from Tufts Medical Center in Boston, said something that made my jaw drop. He said that one of 10 children with mastocytosis, a rare disease related to my son’s, have autism, you can read the full paper on mast cell activation and autism here

From the lab of Dr. Theoharis Theoharides:

“We reported that the prevalence of autism is ten times higher (1/10 children) in patients with mastocytosis than the general population (1/100 children). What makes this finding even more impressive is that mastocytosis is a rare disease occurring in 1/4000 children and is characterized by many hypersensitive mast cells in many tissues; once would, therefore, expect that the combined prevalence would have been 1/100×1/4,000=1/400,000 and not 1/10 children! We also found that the neuropeptide neurotensin, which is a potent mast cell trigger, is statistically much higher in the serum of autistic patients.”

Now that you understand that there is a link between these cells and autism, let me explain a little about mast cells. Mast cells are cells found throughout the body, most prevalent in border tissues, like the skin and gastrointestinal tract. Mast cells secrete protective inflammatory mediators, which help with healing injuries and killing off foreign invaders. These cells have over 110 different chemicals that are stored inside them in granules, the most famous of which is histamine. When an invader or injury occurs, the mast cells release these chemicals to protect our bodies or initiate healing. These are also the cells which are triggered when an allergic (IgE) reaction occurs. This demonstrates an IgE reaction with mast cells, but similar release of granules can occur without IgE allergies, when the mast cells are over reactive, as with mast cell activation syndrome or mastocytosis.

Mast cells are also in other places in the body, including as a border guard for the blood brain barrier. The blood brain barrier is a mechanism that is meant to keep the brain from being assaulted from many molecules which could be damaging to our brain cells. The blood brain barrier is not completely intact, or is still permeable, up to about the age of two. It also *becomes* more permeable at any age, when exposed to some chemicals in the body. This leaky blood brain barrier can make some chemicals more likely to enter the brain during different times, such as in events of stress, or when mast cells are activated. This paper shares details on how mast cell activation and autism may be related.  On a related note, this paper describes the inflammatory cascade from mast cells caused by mercury.

One more report on allergic symptoms, mast cell involvement and children with autism that is worth a read states: “subjects with hypersensitive mast cells and/or ASD susceptibility genes may represent a unique subgroup of patients who are more likely to respond to environmental and stress triggers, leading to precipitating or worsening ASD.”

Read the whole report here.

Now, knowing that many children with autism have non-IgE allergic and sensitivity reactions, this may have a connection with mast cell activation syndrome. There are lists of mast cell degranulators, which are triggers which cause the mast cells to release all of their chemicals in a cellular level explosion of sorts. This list is from the Mastocytosis Society of Canada.

Something else which helps many people who have mast cell problems is a diet low in biogenic amines. Mast cells have histamine receptors on the cell membranes, so histamine can trigger them to be more reactive. There is a possibility that lowering the systemic histamine levels can make the mast cells less reactive, and many with this disease have trouble with processing dietary histamine. There is an entire group of foods high in histamine, as well as other biogenic amines. Lowering our son’s dietary histamine has helped us dramatically, along with supporting his body in other ways. We have been studying natural health approaches for over a decade, and studying mast cells, histamine and other inflammatory mediators for the last two. In our journey, we’ve found that many other individuals with varying mast cell disorders have found help from our experience as well. At this point, I’ve presented information about lowering the body’s histamine burden, at two regional meetings of The Mastocytosis Society, and at the national conference in Seattle last October. This is a link to the most recent presentation at the Washington, D.C. regional meeting.

Currently in our journey to keep our children as healthy as we can, we have pursued some genetic testing. As it turns out, many of our children’s enzymes in the methylation cycle are affected by their SNPs, in fact, our son has both MTHFR and MAO A variants, which have both been linked to autism in studies. Two of the enzymes which break down histamine in the body are affected by enzymes in the methylation cycle: histamine methyltransferase and monoamine oxidase (A). Seeing all of these individual pieces linked with autism, mast cell activation and genetics, point me to an underlying metabolic issue with clearing chemicals from the body. Not that it’s our genetics that are causing autism, the unbelievable amount of chemicals in our world that make it impossible for these children to not be safe. It all makes me wonder why more consideration isn’t being given in mainstream care, to how these children’s bodies, livers in particular, are able to detoxify. Our body has to clear all chemicals we contact. Whether inhaled, ingested, injected or absorbed through our skin, our liver is still responsible for getting them out of our bodies.

I look forward to having more conversations with thinking moms around this subject. In fact, I would love to connect with more of you on facebook and Twitter, to further conversations about these difficult health challenges for our children, and how to better support them.

Pulling all of this together, it’s hard for us not to feel that we have ‘dodged an autism bullet’. We have been told by two doctors now, that if our son’s chemical burden through his life so far had been greater, our son would have likely experienced significant neurological inflammatory response. We know he developed neurological tics from several periods of time his histamine burden was high from exposures to chemicals outside our home. His genetic variants, clinical presentation and labwork have run parallel to many children we know with autism.

Some early ‘allergic’ signs and symptoms that one of our naturopathic doctors brought to our attention were eczema, cradle cap, foul diapers and really waxy ears. These are also warning signs of internal inflammation in the body, which could point to having adverse reactions to a significant toxic burden.

For those children who have allergies, sensitivities and inexplicable reactions to their world, there should be sirens going off in parent’s and doctor’s heads about their ability to clear chemicals from their bodies. This would apply to both exogenous (those entering the body from outside, which are abundant in our consumer world of plastics, products with heavy fragrances, free flowing medications and chemicals in our food), and endogenous chemicals (those made in the body, like hormones, inflammatory mediators, antibodies and more).

BlackdenFamily2

In our case, we will never know if our son would have ended up with autism if we made different decisions about our diet, lifestyle, birth support team, medications and vaccinations. What we do know is even exposures to small amounts of chemicals today have gross biochemical ramifications in his little body. These exposures can decrease the effectiveness of his blood brain barrier, increase systemic inflammation, negatively affect gastrointestinal function, pain levels in his body, and more. Many children with mast cell disorders or not, won’t have the level of sensitivities that my son does, but we’ve met scores of families with children exhibiting inflammatory processes that are baffling their doctors. Before adding more…more oral medications, more chemicals and viruses from vaccines, more topical steroids, it could be helpful, and even vital to our children’s health, to investigate the underlying cause of their systemic inflammation.

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 a family hires. Her 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

You can Read Part 1, 2, and 3 of this series here:

Part 1 – Autism Prevention- Autoimmune Family History

Part 2- Autism Prevention- Mitochondrial Toxin Exposure

Part 3- Autism Prevention- Vitamin and Mineral deficiencies

Editor addition: Check out this video/webinar by Dr. Theo regarding Autism and Mast Cells

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This entry was posted in Allergies, Autism, Autism Prevention, Genetics, Mast Cell, Medical, MTHFR, Toxins and tagged , , , , , , , , , , , . Bookmark the permalink.

5 Responses to Autism PREVENTION part 4: Mast Cell Activation Disorders, Guest Post by Tiffany Blackden

  1. Pingback: Autism PREVENTION Part 1: Autoimmune Family History | Taking Baby{food}Steps…

  2. GREAT information for all parents! I think that making this point known to is especially important, considering the scientific link they have now made to inflammatory disease (even dormant) in mothers and autism as well. My mother had inflammatory disease, I developed MCAD in my late 30s (but had many symptoms throughout my life that indicative of me developing the disease) and I have 1 child with Aspergers, one with Aspergers and sensory issues and one with sensory issues only. It’s a very hard pill to swallow that you could be “responsible” for the difficulties your child has, but I also think that the plus side is the awareness that something *could* happen, what to watch out for and to be as careful as possible to keep their inflammation levels as low as you can – for kids who have an ASD, but those genetically predisposed to either Aspergers or inflammatory disease as well.

  3. Pingback: Guest Post on Babyfood Steps Today | Mast Cell Madness

  4. Pingback: Thinking Moms' Guide to Red Flags - Allergic Shiners - The Thinking Moms' Revolution

  5. luv4thepaws says:

    Oh my gosh. I found this linked through the Thinking Mom’s article about allergic reactions. Tonight, I did a Google search for “red throat, dark circles under eyes, tiredness in toddlers” and found the TM article. I’m so grateful yet clueless at the same time! What do I do to get the help you have?

    My daughter turned 3 on the 4th, and she’s been a mess. Emotions all over the place, she had cradle cap from 15 months until about 34 months (yes very recently! And prolonged!)… She’s unvaccinated, no waxy ears, small bouts of eczema through the years, still breastfeeding, and highly verbal for her age. We suspect Asbergers but no help from Dr with regards to testing. She was born with lip and tongue tie, MTHR mutation as you might know. Husband has spina bifida, his brothers have down syndrome and autism (again all 3 caused by that mutation). We suspect Asbergers after finding the great Aspien Girl website. She’s always hated her nails cut, sensory things, can’t stand to have her hair fussed with, thinks she’s an adult, has trouble interacting with peers, and many more things.

    Anyway, the signs these last two weeks scare me. She’s been stuttering up a storm, seems confused at times, etc. I don’t know what to do. I’m gluten free (sensitivity no official diagnose but I have many of the signs like the “chicken skin” bumpy arms, eczema, etc, so my daughter doesn’t eat much gluten. She eats a lot of organic yogurt. I just don’t know what to do, but your website is amazing and really hit home for me, thank you so much. I have an 8 month old and so much to do so I feel like I need to educate myself on this but don’t know where to start.

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