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I've read so much insightful theory, wisdom, and healing on this forum, I don't know how it's taken me a year and a half to post! That's how long I was dealing with this specific issue without understanding it, and I just discovered some effective management for it, so it's time for me to share. I've tried to include thorough descriptions and keywords, since what helped me on this forum was finding all the random pieces of data and witnessing how people had connected them before me.
I'm very solutions-oriented and have been using my health and symptoms as a testing ground. I am interested in approaching this from a perspective of "reverse engineering" what happened to me. My hard-headed logic is: there was a specific event that caused it, which points to specific faults caused from that event that can be fixed. (Though I know health is never that simple. =) If I can find a fix, maybe it can point to solutions for others too.
Here's a rundown of my history.
Mast Cell Activation that manifests often and specifically as:
Triggers:
Management/Treatment:
What hasn't worked:
Random Medical History:
The Event:
Now, what may be unique in my case (or not?) is that I have an exact cause that created this reaction in me.
In January 2017 I started up the Amazing Liver & Gallbladder Flush by Andreas Moritz (it's a book and popular flush protocol).
I started it because I would always feel sluggish and low on energy ("chronic fatigue"), especially in the afternoons after eating. But after a week or two I started to have the above-described symptom set non-stop, and even after I stopped the protocol (I didn't finish and flush out whatever may have been there, assuming these flushes work, because of how bad I felt), I continued having the symptoms almost every week for the last year and a half.
One ingredient that I took in large doses for that protocol was apple cider vinegar. I am certain it caused what I'm dealing with, though I forget how I came to that conclusion except that in light of histamine and mast cells, it seems obvious.
Another thing I had right before starting the cleanse, was major stress from some relationships during the holidays — and I had a pretty major head cold from my body mal-adjusting by flying to a freezing climate from a warm climate (Los Angeles to West Virginia in December).
I've briefly read research from Dr T.C. Theoharides MD PhD who studies mast cells, and I believe somewhere he stated there's often a multi-factor event that triggers the original symptoms, including stress.
Questions & Figuring It Out:
MAST CELLS / ALLERGIES
"TREATMENT"
Mast cell issues appear to be a "manageable disease/disorder/syndrome" with "no treatment." I understand how complex this stuff is, but I really cannot accept that. Because:
So theoretically, it can be turned off or at least reverted to where it used to be! (I'll stick to this until I die!!!)
If anyone has knowledge to share and discuss, I'll greatly appreciate it. Meanwhile I'll continue investigating and experimenting on this issue as long as I have it, and will report back if I discover any advancements.
I've also attached a histamine / mast cell symptom flow chartI found (linked here for anyone else wanting to use it). It appears I may have low oxygen issues, but I don't understand how the mechanisms interplay in order to diagnose that or test it out. Blood oxygen level always showed up normal in lab work.
I'm very solutions-oriented and have been using my health and symptoms as a testing ground. I am interested in approaching this from a perspective of "reverse engineering" what happened to me. My hard-headed logic is: there was a specific event that caused it, which points to specific faults caused from that event that can be fixed. (Though I know health is never that simple. =) If I can find a fix, maybe it can point to solutions for others too.
Here's a rundown of my history.
Mast Cell Activation that manifests often and specifically as:
- heavy, sore, tingling, BURNING eyes
- brain fog, confusion, dull thinking, short attention span
- "fatigue" but sleep doesn't help, unless I'm at the tail end of the symptoms and it acts to "clear" it up. (I figure the fatigue is partially the body confused by the eye symptoms, partially energy dysfunction.)
- apathy (seemingly both because of bio-chemical changes and my mood deflating from having to deal with these symptoms; occasionally, I can maintain my good mood)
- Symptoms typically last 24-52 hours.
Triggers:
- Various foods, it's almost like nothing is safe. Sometimes something is okay one day, and a trigger the next.
- Possibly due to the histamine bucket.
- Some specifics I'm aware of: soda, sugar, milkshakes, grapefruit, and an assortment of other foods that seem to have bread/gluten/yeast/wheat as a factor. Grapefruit was the weirdest immediate-reaction I had, but makes sense in terms of histamine.
- Citrus in general does not bother me.
- Paint.
- My bedroom was painted last summer and I thought it had aired out enough after a day, so I slept in it. Woke up with a horrendous sore throat that devolved into fatigue, stuffy nose, and body aches like I had the flu.
- Burned house.
- I once walked through a house that had a major fire long before I visited. Must've been the chemicals that triggered me. I didn't exactly have the burning eye symptom, but my mind and mood went a little haywire, and this caused me to investigate MTHFR more deeply.
- Stress, at least sometimes.
- A few weeks ago I had a super emotional day and didn't eat until dinner. The emotional moment occurred in the afternoon, and I started to feel my eyes burn before dinner.
- I've read evidence of stress being a major trigger for mast cells.
Management/Treatment:
- 90-100% effective: Ketotifen eye drops — I discovered these one week ago and this is the FIRST relief I've had within an hour among everything I've tried! This is heaven to me right now.
- I've taken cetirizine, loratadine, and diphenhydramine for seasonal allergies before with no effect on symptoms.
- 25-75% effective: mixing baking soda into lukewarm water and dripping it onto my eyes. Also, you're not supposed to put baking powder in your eyes, but when I discovered the bicarbonate-eye connection I didn't realize this at first and used baking powder. I don't use bicarbonate in my eyes anymore, but when I did it seemed baking powder was a little more effective (though the idea of adding corn starch to my eyes is not appealing).
- This solution definitely helped, but didn't completely take away symptoms. In my opinion: it's worth trying if you are suffering similar symptoms and don't have access to eye drops but use baking soda, not baking powder except at your own discretion. I don't want to start a dumb trend on the internet people butting baking powder in their eyes.
- Probably effective: supplementing D3 and other mast cell stabilizers (quercetin, alpha lipoic acid).
- I have a chronic D3 deficiency that I did not take seriously until this last week when I learned it was a mast cell stabilizer. I suspect my deficiency is related to the VDR gene variant I have.
- I'm eager to see what happens after I fill up on D3 after a period of time.
- Potentially effective: 1:2 mix of potassium bicarbonate to sodium bicarbonate (baking soda).
- I think it works, but I need to test more. The first time I had too much and it gave me alkalosis ("weak stomach" feeling, arm muscle tremors). This bicarbonate mix is a natural antihistamine that I discovered.
- I personally add a slice of lemon first, then let the bicarbonates fizzle on it before adding water. I read this somewhere when I discovered taking sodium bicarbonate + lemon to help lower body acidity (not sure how helpful it is for that though, it probably lowers stomach acid more than anything).
- To be determined: I just got two supplements from Seeking Health: HistaminX and Histamine Block.
- One's like an antihistamine, the other provides DAO enzymes to process histamine in the gut.
- I will test them when I can with my triggers (particularly my oh-so-bad but favorite strawberry milkshake from McDonalds).
What hasn't worked:
- Gel eye drops, when I was avoiding preservatives.
- Until discovering mast cells I treated my symptoms under the hypothesis of liver candida + detox deficiencies because I have MTHFR 677 heterozygous and a handful of other variants, and the paint and burned house seemed to be formaldehyde / acetaldehyde/toxin triggers.
- I tried tons of supplements to support detoxing with no noticeable effects. A couple times I reduced the symptom duration to a single day, I think because I started adding alpha lipoic acid and quercetin to my cocktail, both mast cell stabilizers.
- But nothing worked like the ketotifen eye drops.
- Treating leaky gut.
- For about 4 of the last 6 months, I've been having shakes made from Garden of Life's vanilla chai meal replacement powder, and for the last two months I've been taking Dr Axe's Gut Health along with probiotics, reishi, and glutamine.
- This shake must be the most raw ingredients I've had in my diet ever in my life, so I expect it's very helpful. I'm not saying healing my gut hasn't helped, as I believe it has, but it did not solve the symptom set and I still have various foods trigger the symptoms.
- However, I had a mediocre report back from a uBiome microbiome test, so my efforts may be biasing me to thinking I'm better off than I am.
- Treating the symptoms as acidosis.
- One glaring trigger I had was when I had no symptoms for a month (Feb-March 2018, eating pretty clean + shakes everyday) and then drank 24 ounces of "natural" soda because I was super stressed and thought "my symptoms have been gone, I'm all good!" The hangover I had was way worse than from drinking alcohol, it was actually only a few levels away from the massive paint reaction that felt like the flu.
- This taught me about the sugar-acid connection (my eyes feel "acidic" during symptoms), and also made me think about how I craved Essentia's super-alkaline water, which I'd often buy before going on a hike.
- The sugar trigger also made me consider diabetes but normal lab work panels come back fine and I was never tested further.
Random Medical History:
- I'm a 26 year old male.
- Aside from these mast cell symptoms, I've never felt better.
- I have vigorous energy, I've healed a lot of my emotional issues, and getting tired in the afternoons is only every few days (used to be every day).
- This is what makes me think I don't have anything else major underlying the mast cell activations at this point.
- Though, I discovered I get post-exertional malaise (PEM) pretty easily.
- I did a ton of walking a couple months ago and it gave me very sensitive skin, I believe it's called alloydynia is what it's called.I felt like I had gotten sick and needed to stay under warm blankets, even in the heat. Touching my skin hurt.
- My blood work always looks fine, aside from:
- Cholesterol is usually a bit high if I don't make sure to eat fairly well. (I had too much take-out at my old work.)
- D3 is always low, unless I supplement.
- Liver enzymes are always low, which "isn't a problem" but still seem like a signal to me in some way I cannot understand.
- Unfortunately I was never tested for mast cell chemicals / tryptase, and blood work isn't accessible to me right now.
- I do not have Sjrogen's syndrome, which could cause similar symptoms. Tested March 2018.
- B12 deficiency in autumn 2010, linked to being mis-prescribed ciprofloxacin during summer 2010 (an antibiotic that likely decimated my already-iffy gut flora).
- The deficiency gave me insomnia and depression.
- During cipro I got a phototoxicity sunburn, but no other effects aside from probably flora-decimation.
- For several months I depended on diphenhydramine to get to sleep. It helped when nothing else did.
- I wonder if that says anything in light of ketotifen helping me.
- Eventually I started taking methyl-B12 instead of cyano-B12 and that was the first night I felt tired since taking cipro. Methyl-B12 healed that deficiency.
- I've never had a B12 deficiency again that I know of (I've been re-tested over the years).
- Used to get really tired and moody in the afternoons, which was a main reason for starting the the liver/gallbladder flush I mention below.
- Sometimes food still makes me need a nap, but I can push through if I have to without getting too bad in terms of mood or energy.
- Was generally unstable with my moods until about one year ago, and defaulted to anger in many cases.
- I have since healed several trauma points that have reduced most mental negativity, but I believe in my past I did have chemical and nutrient imbalances, and I experimented with several supplements based off books like the Mood Cure and other similar resources.
- Blood pressure is usually normal to a little high.
- I have skipped beats, sometimes with triggers, sometimes with none.
- The skipped beats started in mid 2013 during a period of intense stress.
- Since that period of 2013 stress, my chest often feels a little tight while my abdomen feels stressed, and I have shortness of breath (but no asthma … unless this is a form of asthma??).
- I used to think caffeine caused this "energy forced to the head" anxious sensation, but I think my abdomen is tight from some sort of emotional trauma embodied in my muscles/cells (or that's what it seems like). My abdomen holds itself so tight for no clear reason, except that my posture needs to get better.
- While I don't get B12-deficiency-type insomnia anymore, sometimes I keep myself up with an active mind (not negative anymore, just active), and it's related to this sensation of energy being forced upward into my head, out of my lower body.
The Event:
Now, what may be unique in my case (or not?) is that I have an exact cause that created this reaction in me.
In January 2017 I started up the Amazing Liver & Gallbladder Flush by Andreas Moritz (it's a book and popular flush protocol).
I started it because I would always feel sluggish and low on energy ("chronic fatigue"), especially in the afternoons after eating. But after a week or two I started to have the above-described symptom set non-stop, and even after I stopped the protocol (I didn't finish and flush out whatever may have been there, assuming these flushes work, because of how bad I felt), I continued having the symptoms almost every week for the last year and a half.
One ingredient that I took in large doses for that protocol was apple cider vinegar. I am certain it caused what I'm dealing with, though I forget how I came to that conclusion except that in light of histamine and mast cells, it seems obvious.
Another thing I had right before starting the cleanse, was major stress from some relationships during the holidays — and I had a pretty major head cold from my body mal-adjusting by flying to a freezing climate from a warm climate (Los Angeles to West Virginia in December).
I've briefly read research from Dr T.C. Theoharides MD PhD who studies mast cells, and I believe somewhere he stated there's often a multi-factor event that triggers the original symptoms, including stress.
Questions & Figuring It Out:
MAST CELLS / ALLERGIES
- Is it common for mast cell issues to truly start out of nowhere? Or is it a slightly dormant thing that can then be triggered? Reading more of Dr TC Theoharides may illuminate this for me.
- I've been studying all of this only a week. Before this symptom set, I only ever had seasonal allergies. I have myopia and wear glasses, and it was common in the past for my eyes to get heavy and tired, but until the liver flush I never had unbearable, burning eyes.
- I've seen people advising against ACV when there are known mast cell issues because of it being high in histamine. But has anyone ever heard of it causing the issue itself? I guess if stress can, anything can…
- Does anyone have any theories as to what mechanisms could be at play with ACV in particular?
- Could I have over-sensitized my mast cells or immune system? With taking 2-4 tablespoons of ACV in water a day, maybe it became a threat to my body, or my body was already weak from being sick+stressed and associated constant ACV with that?
- If I had moderate leaky gut before the liver cleanse, could constant ACV ingestion across 2-3 weeks have worsened it?
- What if my mast cells aren't hyper-sensitive, but rather stuff is still getting through my gut? I wonder if there's a way I can confirm or deny this?
- I just realized from this article that there are more mediators at play than histamine. I know about histamine intolerances because of MTHFR and Ben Lynch's work, but not the other mediators.
- Anyone else have any knowledge?
- It's suspicious to me how only my eyes and brain are affected. No rashes, no itching, no runny/stuffy nose unless it's allergies or a massive trigger like paint or chemicals. If it's indeed histamine at play, it seems to point to H3 or H4 receptors being triggered, not H1 or H2.
- Are there any other stabilizers I should look into? I'm wondering if I should take more quercetin.
- There's oral ketotifen out there, but I think that requires a prescription.
- After one doctor mis-prescribing cipro (I had a varicocele instead of a testicular infection), another doctor hardly noticing or caring about my B12 deficiency, and three other doctors clueless about how to handle MTHFR and leaky gut and never coming anywhere near mast cell issues, I'm my own doctor and hesitant to visit one unless there are mast cell specialists out there.
"TREATMENT"
Mast cell issues appear to be a "manageable disease/disorder/syndrome" with "no treatment." I understand how complex this stuff is, but I really cannot accept that. Because:
- A) It's not the "optimal" state of the body. The body is hyper-reacting to something. The body would rather not be doing this.
- B) My eyes used to get heavy and and sometimes with a tired/dull mind, which may have been the same mechanisms, but my eyes never burned unbearably.
- C) So either I never had mast cell activation issues before the ACV(+sickness+stress), or the ACV made it get way worse. Which means it has an on/off switch, or works on a spectrum of intensity.
So theoretically, it can be turned off or at least reverted to where it used to be! (I'll stick to this until I die!!!)
If anyone has knowledge to share and discuss, I'll greatly appreciate it. Meanwhile I'll continue investigating and experimenting on this issue as long as I have it, and will report back if I discover any advancements.
I've also attached a histamine / mast cell symptom flow chartI found (linked here for anyone else wanting to use it). It appears I may have low oxygen issues, but I don't understand how the mechanisms interplay in order to diagnose that or test it out. Blood oxygen level always showed up normal in lab work.
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