Problems with Mast Cell stabilizers

[hb8847]

Apologies, must not have made that clear

 

[EddieB]

Apologies, must not have made that clear

No need, you did. If the mycotoxin is showing up in the urine, are there other areas you’re having symptoms? Have you done any blood testing for yeast / mold?

 

[hb8847]

No need, you did. If the mycotoxin is showing up in the urine, are there other areas you’re having symptoms? Have you done any blood testing for yeast / mold?

So my symptoms are mainly the classic ME/CFS ones (fatigue, joint pain, cognitive impairment), interspersed with some other weird ones that I could probably now attribute to MCAS (reactions to food and medications, eye watering). My understanding is that mould toxins could contribute to both.

As for where the mould is located, who knows. We know mould can live in the gut, but it's likely my treatment with oral anti-fungals got rid of most of that. Brewer & co hypothesise that mould can also persist in the airways of a patient, I never gave it too much thought because I don't really have breathing or sinus issues, but my understanding now is that a lack of breathing symptoms doesn't necessarily rule out the presence of mould in the airwaves - it could just be triggering different symptoms.

I've not done any blood testing for yeast or mould; my doctor hasn't suggested one and given the urine test for mycotoxins was elevated I feel that's probably good enough for now. If I manage to get the Urine results back to normal but I'm still having symptoms then maybe it could be something worth considering.

 

[vision blue]

The cromyln sodium nasal spray has a preservative in it, so perhaps youre reacting to that.

note that cromyln sodium is considered for surface mast cell reactions, not systemic ones. So mast cell reactions on nasal mucosa or Gi mucosa or skin- all surface

keto..the one u posted about is used for systemic reqctions.
i tried some after my allergist prescribed for my presumed MCAS. Cost alot since was componded. I put a bit in my mouth and held it there- and thought id been poisoned! My lips started swelling nearly immediately. It was all awful.

when you say it makes u more tired, does it though increase your tolerance of foods?

would be curious to know your results of comphrensive stool analysis and a blood spot Igg allergy Test to foods if youve taken them

any other evidence of MCAS other than food reactions? How Do you responD to chrmical smells for example?

just wondering on alternatives to mcas - so if your gut was messed up and every single food u ate leaked into bloodstream in large quantities, that woukd cause your immune system to react whether you had overreactive mast cells or not.

 

[hb8847]

Thanks for the suggestions @vision blue

when you say it makes u more tired, does it though increase your tolerance of foods?

Unfortunately not

would be curious to know your results of comphrensive stool analysis and a blood spot Igg allergy Test to foods if youve taken them

Stool analyses, I've had a couple. First in around 2016 showed really bad gut dysbiosis, then another done in 2019 showed again dysbiosis but much less bad than the first one. In between these I had taken antibiotics and antifungals to try and address the balance, but my gut health is probably still not in the best state, and if I do have leaky gut as a result that could be partly why I'm reacting so badly to everything. Although I presumed the mechanism here would be mast cells, I wasn't aware there were other facets of the immune system that could be triggered by food particles passing through a leaky intestinal lining.

I've had an allergy test of some sort but I don't think it was a blood spot one. I don't think I'm allergic was the upshot.

any other evidence of MCAS other than food reactions? How Do you responD to chrmical smells for example?

No chemical smells or anything, but nasal sprays also trigger me off, as do some vitamins and supplements in tiny quantities, like b12, vitamin D, which suggests to me it's not purely a leaky gut thing.

 

[linusbert]

Just tried this again yesterday, unfortunately it didn't go well. If anything it seemed to exacerbate my reactions to food, bizarrely.

MCAS is weird.

i noticed i reacted to anything herbal-extracted. pure synthetic forms of many things often do work better for me.
so synthetic vC much better than any plant extracts. that goes for everything even quercetin extract. didnt find a pure synthetic version for quercetin yet.

i also noticed i react to the same supplement-type sometimes positive or bad depending on the vendor.
reagarding the vitamin D, did you try vegan or the sheep lanolin? lanolin allergy isnt that rare. on the other side the vegan one is made from lichen which is a fungus.

i have had a course of vitamin D high dose like 30-40k a week over the last 6 month. i feel my asthma and allergy problematic got worse in that time frame. i already take the lichen form. it did not much for me, raise D from 4ng/ml to 11ng/ml after 700.000 iu. thats a bit , but still danger zone. i dont know if i should continue, i feel like the first days after taking D are the worst.


i do have a question, for magnesium / potassium , what forms are tolerable for histamin problematic? i've read that citrats might be not good?