DESPERATLEY IN NEED OF HELP ADVICE PLEASE (MAST CELL /SUPER REACTIVE ETC)

[cfsbloke1234]

Hi all would love some advice from people in the know. the mast cell thing is new to me.

im in a very bad state of health me pots mercury adrenal,mcs, severe gut problems. list is endless housebound best part of a decade .

looking for info on the mast cell stabiliser thing , and what they help with . it seems im likely a candidate for mast cell i have very strongf reactions to almost all foods (been only able to eat 12 items for last few years),meds,mcs etc . a huge barrier for me is reacting to so many supplements and things thay mayy otherwise help.

so the mast cell thing keeps coming up

for those who take mast cell stuff, quercitin , and ketifofen (sure both spelled wrong , sorry ) ,. what EXACTLY do they help with ? your food reactions eg can eat more foods? your breathing? or only your airborne mcs stuff? or swallowed immune type reactions(this is main thing Im really desperate for)

and anyone in uk had experience of their nhs g.p helping with this eg prescribing?

thanks, appreciate any help and your experiences

 

[Wishful]

Is your reaction to food quick, or is it delayed? My ME started as a type IV delayed food sensitivity (to most foods). It typically has a 48-72 hr delay. If that's what you're experiencing, then you need to look into type IV sensitivity. If not, I'll let others chime in about mast cells and whatever else.

 

[cfsbloke1234]

Hi . itsa so hard to say. i have such a huge number of complications, severe sibo, leaky gut, mercury etc . in most cases with food i think they tend to be quite quick reaction. like to be honest everything new in my system i feel a big increase in brain heart immune energy symptoms. a tiny % my body can get used to

 

[Wishful]

You can rule out type IV sensitivity then. It's a long delay, and very consistent. For me the response was usually 48 hrs +/- just a few minutes.

One thing that did work for me was a rotation diet: consuming foods from a genetic family only once every 5 (might vary with the individual) days. Very inconvenient, but it did let me avoid triggering symptoms.

 

[cfsbloke1234]

You can rule out type IV sensitivity then. It's a long delay, and very consistent. For me the response was usually 48 hrs +/- just a few minutes.

One thing that did work for me was a rotation diet: consuming foods from a genetic family only once every 5 (might vary with the individual) days. Very inconvenient, but it did let me avoid triggering symptoms.

i wouldnt know if was 24 48 hours later i get so many constant waves and shifts and layers of symptoms but the immediate is obvious very noticeable

desperate to be able to eat other food hoping the mast cell stabilizers inhibitor approach can help

 

[CedarHome]

for those who take mast cell stuff, quercitin , and ketifofen (sure both spelled wrong , sorry ) ,. what EXACTLY do they help with ? your food reactions eg can eat more foods? your breathing? or only your airborne mcs stuff? or swallowed immune type reactions(this is main thing Im really desperate for)

I have a mild case compared to many, but here's what I've found:

- Can't tell the difference between quercetin and no quercetin

- Can't live without the 2 OTC antihistamine cocktail I"m on now
Ranitidine 2x day
Citirizine 1x day

I've started ketotifen to see if it will help me quit these, can't tell yet.

Are you able to pursue a gut-healing protocol? It's really hard to cook all the time when you feel so crummy, I know.

But my ND says that mast cell activation is something triggered by the combo of SIBO, Leaky Gut, Lyme, toxins etc... so to heal your immune system through improved gut health is really the long term game plan.

I hope you find something that works!

 

[cfsbloke1234]

I have a mild case compared to many, but here's what I've found:

- Can't tell the difference between quercetin and no quercetin

- Can't live without the 2 OTC antihistamine cocktail I"m on now
Ranitidine 2x day
Citirizine 1x day

I've started ketotifen to see if it will help me quit these, can't tell yet.

Are you able to pursue a gut-healing protocol? It's really hard to cook all the time when you feel so crummy, I know.

But my ND says that mast cell activation is something triggered by the combo of SIBO, Leaky Gut, Lyme, toxins etc... so to heal your immune system through improved gut health is really the long term game plan.

I hope you find something that works!

HI thanks ye thats kinda my fear the extent of the combination of all the things wrong with me makes fixing my gut so harrowing . are you in uk?or usa? i can try some over counter uk antihistamines but they ,everything contains stuff i react so severe to, cellulose, or maize or any kind of sugar etc . if i can take them sublingually it can be easier depending

do you have blocked nose ? not runny but stuffed inflammed etc? the anti histamines help at all?

thanks! would love to make some new friends battling my stuff im in such a bad situation and so isolated and the world of ME complications so varied i could use some people who battling same stuff .get better or die tryin right!

 

[ljimbo423]

HI thanks ye thats kinda my fear the extent of the combination of all the things wrong with me makes fixing my gut so harrowing .

Very often it's dysbiosis, SIBO and leaky gut that can be the trigger to many disorders, including mast cell activation and food allergy or intolerance.

There are 3 leading CFS researchers that think dysbiosis is the primary driver in CFS. I do as well. I am feeling better than I have in 10-15 years and continue to improve by treating dysbiosis and leaky gut.

I understand that it's very challenging when you don't tolerate many foods or supplements very well. I do think your best overall "big picture plan" would be to fix your gut.

 

[ahmo]

My MC issues aren't nice, but aren't serious compared to many others. I use royal jelly daily, twice daily when in a flare. NOW rutin (non-citrus) for any itches. Also mangosteen, twice/day when flare. Tulsi/holy basil is a herb that helps w/ histamine. I buy bulk, add it to my tea. Mastcellmaster.com has lot's of papers, Dr. Theoharides. Also, Dr. A....can't remember his name now. I've just had a 3 month long spell of eczema, first ever. miserable. Resorted to OTC antihist during the worst, now back to my regular regimen. Good luck.

 

[Ineedausername]

Hi @cfsbloke1234 sorry I see this is old but just in case...

My mum who is cf/mast cell was reactive to everything but courgettes foodwise. Sodium cromoligcate (Nalcrom) is your friend on that. All mast cell patients need to start meds S....L...O.. .W like ridiculously slow. Think snail.

Ketotifen (I'm not sure of the spelling either!) Didn't help her so much with food but has calmed down the chronic hives, general inflammation, tolerance to perfumes (tho this crashed after an infection last year). Anyway she now eats more than courgettes (hooray!) but she is on the strictest low histamine diet.

If your in the UK a pre-warning nalcrom is non-formulary, it's tested, it's licenced but you can meet resistance in prescribing on the NHS.

We're really happy with her private immunologist, he's saved her life, PM me if you need the name. (I would just write it but I haven't got his name to hand and it's a very unusual spelling!) I'm sure he would have been posted about on PR before he's pretty much the bees knees for mast cell patients in the UK.

 

[sunshine44]

Hi all would love some advice from people in the know. the mast cell thing is new to me.

im in a very bad state of health me pots mercury adrenal,mcs, severe gut problems. list is endless housebound best part of a decade .

looking for info on the mast cell stabiliser thing , and what they help with . it seems im likely a candidate for mast cell i have very strongf reactions to almost all foods (been only able to eat 12 items for last few years),meds,mcs etc . a huge barrier for me is reacting to so many supplements and things thay mayy otherwise help.

so the mast cell thing keeps coming up

for those who take mast cell stuff, quercitin , and ketifofen (sure both spelled wrong , sorry ) ,. what EXACTLY do they help with ? your food reactions eg can eat more foods? your breathing? or only your airborne mcs stuff? or swallowed immune type reactions(this is main thing Im really desperate for)

and anyone in uk had experience of their nhs g.p helping with this eg prescribing?

thanks, appreciate any help and your experiences

I can completely relate, in your boat. Have been trying soooooooooo hard for so long to heal my gut but masrt cell stuff is making it next to impossible as i have these horrible crashes with almost everything i try to heal my gut...celery juice, supplements, vitamins, foods, etc. You are not alone. I was just able to add 2 new foods for first time in year, so at 14 now.

 

[Archie]

Natural mast cell stabilizers mentioned :

https://poiscenter.com/forums/index.php?topic=2372.0

https://www.holtorfmed.com/novel-treatments-for-mast-cell-activation-syndrome/

http://www.mastcellmaster.com/research.php

https://healinghistamine.com/natural-mast-cell-stabilisers-for-histamine/

One product : https://www.amazon.com/Algonot-NeuroProtek-1-Bottle/dp/B0045JB858?th=1



I had terrible full body rash , i think pygnogenol, quercetin ,vitamin c helped .


http://mastcellactivation-roadtomanagement.com/2018/02/25/vitamin-c-natural-antihistamine/


Remember also, that glucose is antagonist for vitamin C , if you take a lot sugar/carbs it will prevent cells use Vitamin C properly and that could also effect to mast cells .