Talk to me about all things mast cell activation syndrome!

RealNeat

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Turns out I have a severe B12 deficiency which was making my lips/mouth skin burn but it was so hit or miss with foods I just kept looking for causes until I finally nailed it.
How is that even possible? Impaired digestion?

A good friend of mine is having nerve issues (she used to be vegan) and I told her she may have a continuing B12 deficiency. I recommended getting that checked and looking in ALA (alpha lipoic acid) and lions mane mushroom.

Ironic that it ends up being your case. Still confused how an animal rich diet can allow this however.
 

Dutchie

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Lately I've also been pondering if I'm suffering from mcas, given my weird (seemingly unrelated....to docs anyway) issues over the years.
For me,brought on by Lyme&co and exacerbated by a bout of what I presume was covid.
Histamines (foods) are really taking a toll on my digestive system and the rest of my body.

I tend to think that an endocrinologist wouldn't know much about mast cells, as an endo is more about hormones.....at least they should be, the ones I've seen were even useless in that regards.
I suspect an immunologist could possibly know more about mcas, given the fact that a mast cell is a type of white blood cell.
 
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How is that even possible? Impaired digestion?

A good friend of mine is having nerve issues (she used to be vegan) and I told her she may have a continuing B12 deficiency. I recommended getting that checked and looking in ALA (alpha lipoic acid) and lions mane mushroom.

Ironic that it ends up being your case. Still confused how an animal rich diet can allow this however.
I live a high stress life (stress eats up B12) that is unavoidable on top of having the MTHFR mutation.

That and animals are also deficient in B12 these days due to the soil being depleted and then we're not digesting much from the meat we do eat.

But also even though I'll get attacked on here for it... Aspirin as well as sugar highly depletes B vitamins and I suspect in my case this was a huge contributor.
 
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Peatness

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I live a high stress life (stress eats up B12) that is unavoidable on top of having the MTHFR mutation.

That and animals are also deficient in B12 these days due to the soil being depleted and then we're not digesting much from the meat we do eat.

But also even though I'll get attacked on here for it... Aspirin as well as sugar highly depletes B vitamins and I suspect in my case this was a huge contributor.
Did you do blood test for B12 before your injections?
 
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Did you do blood test for B12 before your injections?
Yep and even with using Thorn B complex #12 I was 6 times below the lower range.

Edit to add: I had stopped using the thorn complex for about 2 weeks before I sent off for labs.
 
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Okay I will try to keep this as short as possible, no promises 😅

Quick recap:

1.) About 4ish months back, maybe 5 now, I develop sudden reactive hypoglycemia.

2.) Nothing I did really helped all that much. I will say that working with some b vitamins and copper have made the episodes less severe ( instead of dropping into the 50 range, I'll drop into the 70s).

3.) Food pairings do not matter. No they don't. There is no rhyme or reason as to what would cause me to have an episode in the terms of carbs, fats, proteins being combined or omitted. Please know my blood sugar does not climb before it drops and it can literally drop in the middle of eating.

4.) Working on my liver has done nothing and actually when I started to use things like taurine or glycine my drops happened more often so I backed off.

5.) I decided to go on a very limited raw milk, gelatin, fig, red meat/organs diet. Just felt like I needed to reset my body while also really getting in a lot of minerals.

6.) I ate during this diet only like 2 days in a small amount of steak tartare. Suddenly my mouth went numb, my lips burned, and my skin had a vague feeling of sunburn all over my face, felt slightly harder to breathe, ears began screaming. I thought maybe it had been the onion that I added. Nope, it happened the next day with just meat.

7.) Fell down the histamine rabbit hole and realize that I have a majority of not just histamine intolerance but the symptoms of mast cell activation syndrome. I don't currently go anaphylactic but I ate a fig yesterday being like oh I ate those before and they weren't a problem and I did have a very hard time breathing and ended up taking a couple Claritin.

8.) At this point, the only thing that I can currently eat over the last few days without having a pretty bad reaction is raw milk, egg yolks, mashed potatoes/butter. I'm slowly trying to figure out what other low histamine foods I can eat. I do have some freshly frozen organs and since we butcher our own animals they were literally frozen within hours of killing so should be pretty low in histamine theoretically. Especially the pork organs as it seems pork already has lower histamines?


So I feel like what happened is this problem actually presented itself when I had my first blood sugar crashes during the spring and my system has just been steadily building histamine since.

Just to say I've never had allergies in my life. I could be around the worst pollen or any animal and eat anything and it just didn't bug me.

Now it seems like anything/everything external and internal is creating a reaction.

I know that B vitamins and copper are pretty vital in helping us remove histamines, correct?

I'm also working with vitamin C from camucamu because I'm pretty sure that orange juice would kill me right now with how high in histamines it is.

I have an appointment on October 12th that took me 4 months to get with an endocrinologist. I do believe they also deal with mast cell issues. So what labs would you ask him to draw if this was you??

Anyone have sudden experience with this?

Got any great links I should read?

I know from what I've read on here, people don't think that histamine issues can be resolved, but I wonder if that's different for somebody who suddenly developed them versus a lifelong issue with them?

I'm all ears folk because at this point if I don't figure something out, I'm going to get brave and try very small amounts of MMS because it seems like I might need to eat food to continue living 😅
I can’t handle ordinary B vitamin supplements well, but I haven’t had any problems with this whole foods B vitamin complex:
 

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For a time Cypro helped me but now it just drops my blood sugar dangerously no matter how much I'm eating the next day after using it.
 
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Peat mentioned coffee and coconut oil. Sounds good. What else lowers histamine?
He also mentions sugar. I think salt and having adequate copper also helps. Frankly, since I started having histamine issues about 10yrs ago (thanks vaccines) only cypro really helps mine.

I will paste my notes on histamine. These are from interview transcripts.

Dr Ray Peat On Histamine

Thyroid T3
Calcium
Vitamin D
Magnesium
Vitamin D or vitamin K
Vitamin E
Progesterone
Aspirin

And one of the things that turns on the production of more mast cells or the secretion or leakage of histamine from the mast cells is prostaglandins produced from the polyunsaturated fatty acids, especially prostaglandin E 2. Besides making the prostaglandins in themselves they cause changes in cells that disrupt their functions. In fact every function of the cell can be disrupted by too much of the polyunsaturated fats. And one of the worst things they do is to interrupt oxidative metabolism and the energy deficit I think is ultimately the thing that leads to really serious allergy problems.


It turns out that the same things that cure or help to escape from learned helplessness also helped to stop or reduce the inflammatory reaction and reduce histamine production. And T3, the active form of thyroid hormone was one of the early things that discovered would cure learned helplessness and it does several things that prevent overproduction of histamine. It's been known for anti- inflammatory for a long time but one of its mechanisms is to stabilize mast cells so they don't secrete serotonin, histamine and other inflammatory things.

Calcium and vitamin D are two of the things that are very strongly anti-allergic. Magnesium is the most famous because of magnesium deficiency, they found caused terrific range of inflammatory diseases in animals and they would cure skin diseases, heart disease, nerve disease, liver disease and so on just by correcting a magnesium deficiency. With vitamin D and calcium working with magnesium are very important so that some people cure their allergies just by supplementing vitamin D or vitamin K which is the other major calcium regulating vitamin.

Except sometimes they can break the pattern like vitamin E has antihistamine effect. For example, it prevents the formation of prostaglandins, and as a consequence will prevent the degranulation of mast cells, and so it can prevent the shift to the IgE antibody and the whole thing. Q: You’re saying the histamine is creating a vicious cycle so we do want to break that cycle? Dr. Ray Peat: Yes, breaking the cycle. Even various antihistamines and other drugs can help to break that cycle. Q: And you said before that like nitric acid is also kind of a vicious loop going between histamine and nitric acid which you kind of created Andrew Murray: I think you mean nitric oxide I mean? Dr. Ray Peat: Yes, histamine turns on the production of nitric oxide and nitric oxide signals a bunch of other inflammatory processes, but the worst thing is that it interferes with oxygen energy production. Q: Okay. So the mucus falling though is probably a good thing but it may be a part of that vicious cycle, I guess, that we would like to stop? Dr. Ray Peat: Yes, the mucus itself is fine. It's helpful but you wouldn't have to produce it if you would then have the inflammation.

So two quick questions I have is, I've been experiencing terrible allergies for the past month and noticed that my symptoms dramatically flare up when I go to sleep like it’s very difficult for me to fall asleep. And do you know why that happens? That's the first question. The second question is what do you recommend I do to alleviate those Q: symptoms? Andrew Murray: Yes. Dr. Ray Peat: Yes, I think it's because that's when the parasympathetic system kicks in and it lowers your blood sugar and that combination turns on the histamine release and inflammation. And I experimented – I had that pattern of sleep onset asthma and I found that Jimson weed or atropine, the belladonna type chemical breaks the muscarinic part of the parasympathetic reaction. And I found that that would keep me from going in that very low blood sugar state. But the trouble is relying on the anti-cholinergic is that it tends to dry your mouth and that gives you tooth decay from the absence of saliva flow during the night. So it is an emergency treatment but the real thing I think is to adjust your thyroid and progesterone. Progesterone has broad variety of antihistamine effects. Estrogen turns on both the multiplication of mast cells and their tendency to release histamine and serotonin. And so getting your thyroid to a good level will reduce your estrogen and increase your progesterone and shift the balance in histamine production. Aspirin is another antihistamine that works indirectly by reducing prostaglandin production and nitric oxide production and such. Andrew Murray: You could easily take the three – say 325 milligram tablets in the day. I know some people who take considerably more than that and in conjunction with vitamin K one drop per 325 milligram tablet if it is one ml per drop vitamin K 2 solution is adequate to offset any potential hemorrhagic or
hemodynamic effects of blood thinning that some individual may get, it’s relatively rare but so 900 milligrams a day, that would be a fairly – for people that are suffering with allergies that would also be quite a good approach to self treatment. Dr. Ray Peat: I think so. And sometimes just taking 300 to 500 milligrams before bedtime so they get time to get absorbed before you actually falling asleep.”
 

RealNeat

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I live a high stress life (stress eats up B12) that is unavoidable on top of having the MTHFR mutation.

That and animals are also deficient in B12 these days due to the soil being depleted and then we're not digesting much from the meat we do eat.

But also even though I'll get attacked on here for it... Aspirin as well as sugar highly depletes B vitamins and I suspect in my case this was a huge contributor.
So you feel better now without the crazy dips on b12?
 
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So you feel better now without the crazy dips on b12?
So far yes.

Although there are days I feel yuck but from what I've read that's normal. It's basically from my entire cellular function coming back online, that & making sure I have enough potassium/folate for the B12 to be utilized.
 

RealNeat

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So far yes.

Although there are days I feel yuck but from what I've read that's normal. It's basically from my entire cellular function coming back online, that & making sure I have enough potassium/folate for the B12 to be utilized.
Have you read Masterjohns new article on methylation? It's interesting that he has come to the realization that ultimately it's (MTHFR etc) an issue in energy metabolism, much like Peat. That doesn't mean the folate etc isn't needed but I would recommend reading his article, I'll link it below. Maybe your small intestine have an overgrowth of some sort? I first read about even meat eaters being low in b12 from Chris Kresser but never actually talked to a person with it.

"If you just measure homocysteine, you will completely miss the energy deficiency pattern impacting methylation. This can be seen on a Genova Methylation Panel, where methionine and SAH accumulate at the expense of SAM and homocysteine. This could also lower methylfolate production and intracellular magnesium accumulation, which would be seen separately as low serum folate and low RBC magnesium, with normal or high levels of RBC folate and serum magnesium. The low methylfolate would be seen on the Genova Methylation Panel as elevated sarcosine and/or dimethylglycine, unless it had brought glycine levels low enough to mask this elevation. This energy deficiency pattern should take the focus away from the methylation pathway and on to the spectrum of disorders and nutrient deficiencies that impact the generation of ATP from ADP. That is, the focus should move from methylation to energy metabolism, because in this case energy metabolism is what is driving the methylation problem."- Masterjohn

And
 

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Redmond responded about the lead issue:
"At first, 169 ppb in salt may sound high when compared to 15 ppb in water. But there’s an important factor you have to put in context here: the amount of water vs. the amount of salt you consume per day.

A 150 lb person likely drinks about 75 oz of water per day. At 15 ppb, they’d be getting about 31 micrograms of lead. At 169 ppb, someone who consumes 6 grams of salt per day (which is more than most people are probably consuming), would actually only be getting 1 microgram of lead. This is far below the Provisional Total Daily Intake set by the FDA for adults (75 mcg) and it’s even lower than the limit set for pregnant women (25 mcg) and children (6 mcg). "
In Christ Alone,
Did you get an email from redmond? Did they admit that their salt has 167 ppm, as reported by Lead Safe Mama?
Paul
 
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