Mast Cell Disorder, Histamine Intolerance and the Bulletproof Diet.

Hi there Bulletproof Forum! :)
Long time occasional lurker, and Bulletproof follower for 4+ years now.
Haven't made a post yet but, now feels like the appropriate time because I don't know where else to turn to.

First off - I just want to say, thank you all for your contributions, curiosities, answers and efforts put into this community.
It has changed me personally, and helped me grow exponentially and can't thank you enough for all your guidance,
It's full of an amazing group of people that are contributing to the next level of human high-performance.
And it shows - Let keep advancing and hacking our way to the next level!

Now to the meat and wall of text -

I'm posting here, now because over the last 2 years of my life a new struggle has continuously reared its head, and despite my hopes - doesn't show signs of peacefully diminishing away. That struggle is form Histamine Intolerance (I imagine).

Although some may call bullsh*t due to it being a "buzz-phrase" as of recently - I have actual reason to believe it's real a problem with me (read on). All roads lead to it and i've attacked it from every direction I can think of, every diet protocol I can find, and nothing has proven overwhelmingly successful. (Bulletproof, FODMAP, GAPS, and some iteration of others)

I'll start off by saying I was born with form of Mastocytosis - Urticaria Pigmentosa (Mild Case).
Diagnosed out the womb, and examined by natal-specialists in the US (at the time).
(Wiki defined as: Urticaria pigmentosa is characterized by excessive amounts of mast cells in the skin. Red or brown spots are often seen on the skin, typically around the chest and forehead. These mast cells, when irritated (e.g. by rubbing the skin, heat exposure), produce too much histamine, triggering an allergic reaction that leads to hives localized to the area of irritation, sometimes referred to as Darier's sign.)
It was passed along to me by my mother, whom also has a similar iteration but expresses itself differently - triggered by cold temperatures.

Over the course of my life (Now 27) it hasn't been much of an issue -
Ages 0-4 - would have (unprovoked) occasional hives but, they would go down within 20 minutes or so.
Ages 4-8 - Less of the above.
8-11 - Basically phased out, and forgotten about.
11-25 - No sight of, and for all intents and purposes gone.

(When I had developed hives at any age, it was never seemingly triggered by food, but would just sort of appear...
But then again, I was always told to stay away from foods like shellfish, berries, and nuts growing up - but was never explained as to why except for that I may be allergic to them)

Fast forward to age 25 - Living as healthy of a lifestyle I can:

  • Working out 3/4 days a week
  • Following the outlined teachings of the bulletproof diet/protocol for probably 2 years (religiously for 6+ months)
  • Intermittent Fasting for my mornings to induce positive cognitive edge and fat burn + BP Coffee.
  • Limiting Carb intake at times to avoid insulin spikes.
  • Taking some basic nootropics/supplements after some research/based on what I've see Dave post about and reading around internet/reddit (Caffeine, L-Ttheanine, magnesium (Glycinate), D-3 + Fish oil, Zinc) - All the best I could afford.
  • And at my peak, even tracking my ketone levels (3 times a day) with strips (even though some sources say they are a waste of time)

I felt great most times, and dare I say even "Bulletproof" at my best.
Then however... I noticed some...strange issues.

  • I'm pretty sure (however, didn't get labs/bloods analyzed) due to carb-restriction my hormone levels started fluctuating.
    (Because some things weren't...."working" the right way - if you catch my drift)
    But figured "Ok thats fine i'll just re-introduce and increase my carb intake and things will level out".
    And they did. But then I had encountered another problem...

    • Constipation.
      3/4 days without movement and needed assistance from caffeine + some nicotine (via nicotine lozenges to stimulate, which is still a issue now).

    • Severe Brain-fog & Sluggish - To the point where I almost felt drunk or inebriated. (This also still occurs sometimes).
      It's completely paralyzing and can last/ruin an entire day (post fasting).

But however, the worst new issue was -
Gradual but severe rash/eczema patches around the eyes and hives in my inner elbows.
(To the point of the skin cracking and bleeding around my eyes and it being painful to have water run over my face)
This happened all after:

  • Anaphylactic reaction to fermented foods.
    At the time I was consuming Braggs Apple Cider Vinegar with salads (quite often) and eating some fresh sauerkraut - in an effort to cure what I thought was some gut microbiome issue (Thinking possible Candida after doing research and linking symptoms of brain-fog and constipation). However, that back fired catastrophically because one night my throat almost closed after eating sauerkraut with my dinner.

So, I knew there had to be something else afoot.
And after some googling of my symptoms, in tandem with the foods I had been eating, and the skin reactions I had been having, I came across the term "Histamine Intolerance" and it all fell into place.
Suddenly it all made sense - following the recommendations of so many alternative diet approaches, many of them (bulletproof, paleo, etc) recommend foods that inadvertently (although not always fermented) contain foods with/release high-er histamine levels.
...And I was born with foundational issue processing histamine, DUH!

So I knew what I had to do.
I cut out all the high histamine foods, changed my cooking methods, preferred flavor-palette and attacked this thing head on.
Gradually, my skin begins to heal and eczema vanishes. I eliminate some of the brain-fog. And start to feel..."normal" again.

However now (almost two years later) I'm not finding that I'm "healed" but more "temporarily repaired".
I still have brain-fog, debilitating insulin sensitivity, and now have some forehead acne, and still have constipation issues (if not assisted), and generally feel "un-bulletproof".
And it's...discouraging.

Problem is I don't know where else to turn to fix this for good, because every online forum/resource is starting to promote similar fixes for people with the symptoms I have - "Drink Bone Broth!" "Have small amounts of pre/pro-Biotics!" etc, etc
However, those "fixes" are Histamine nightmares and most people weren't born with the same Mastocytosis/Histamine issues, so they can try those fixes no problem.

So now, I come to the Bulletproof forum - a place, community and concept I truly believe in because of what I have witnessed and felt possible in following an informed life protocol, for help.

I'm not expecting much, but figured if anyone wants to try and crack this nut out of curiosity, I would post my case - and just maybe it could help others suffering too.

Thank you any and all for reading and for your time.
Ill try my best to respond to any questions and continue facilitate + fuel this conversation if it ignites at all.

Thank you.

Comments

  • Have you tried quercetin? Nasalcrom or another form of cromolyn sodium? Stacking an H1 histamine blocker with an H2 blocker? I’m currently stacking Claritin with Zyrtec. How carefully have you explored possible dietary or environmental triggers? Have you checked out the writings by Dr. Afrin? Mast cells are so strange and so fascinating. One little paragraph in Dr. Afrin’s writing pointed out that ferritin is released by mast cells, and some people believe that high ferritin is a form/symptom of iron toxicity (caused by poor iron transport, linked to low ceruloplasm). After you exhaust the over the counter treatments, there are other things to try w a mast cell doc.

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