mast cell activation syndrome

My doctor suspects I have this. I'm reacting to just about every food that I consume without breaking out into severe rashes. Anyone had this in withdrawal and been able to treat it? I've looked into mast cell stabilisers but am so med sensitive that it's very hard to navigate. Anyone experience this ?

try fasting to repair your body.

Are you are are you not having rashes?

 

What symptoms are you having to foods?

 

I can’t even use toothpaste as it has glycerine in.

My doctor suspects I have this. I'm reacting to just about every food that I consume without breaking out into severe rashes. Anyone had this in withdrawal and been able to treat it? I've looked into mast cell stabilisers but am so med sensitive that it's very hard to navigate. Anyone experience this ?

 

I'm so sorry you got this problem too.

 

I am 2 months off and have been reacting to everything I eat since 3 wks off with severe and serious sx. Heart, blood pressure up and down, pins and needles, severe burning allover, muscle contraction, breathing problem, low fever, dizziness, and others, I passed out once after a reaction. Things I reacted include msg, artificial sweeteners, food with high glutamate, gluten, sugar. I can only eat rice and selective vegetables, fruit, and tiny portion of meat.

 

What did you react to snd what are the sx? When did this start ?

How the diagnose was made?

 

Are you still taking valium?

 

4mom

 

Oh, forgot to mention the hives.

I believe it's called mastocytosis and there is a test you can take to see if you have it. But it may just be withdrawal. Have you tried a low carbohydrate, low histamine diet? This helped tamp down reactions for me, but after you get things under control, you should try to slowly reintroduce foods.

Have you ever been diagnosticed maybe with fibromyalgia?

try fasting to repair your body.

 

Bad advice. If you suffer from a mast cell disease fasting will let your mast cells "explode".

There are several ways to diagnose a real mast cell disease, different depends on where you live (country).

In withdrawal the symptoms of an overawe immune system can look similar to a mast cell disease but its really not the same.

Also, doing the tests while being in withdrawal, can lead to wrong results.

I would for now avoid all food which triggers, which is the same for everybody: sugar, caffeine, wheat, chemical stuff in food and stick to a pure, natural diet. Same for cosmetics, make up, coloring hair etc. - the system is getting rid of a poison (benzo) already, its normal it will now over-react to anything on top. Be gentle to the system. Nutrition, not fast food.

 

try fasting to repair your body.

 

Bad advice. If you suffer from a mast cell disease fasting will let your mast cells "explode".

There are several ways to diagnose a real mast cell disease, different depends on where you live (country).

In withdrawal the symptoms of an overawe immune system can look similar to a mast cell disease but its really not the same.

Also, doing the tests while being in withdrawal, can lead to wrong results.

I would for now avoid all food which triggers, which is the same for everybody: sugar, caffeine, wheat, chemical stuff in food and stick to a pure, natural diet. Same for cosmetics, make up, coloring hair etc. - the system is getting rid of a poison (benzo) already, its normal it will now over-react to anything on top. Be gentle to the system. Nutrition, not fast food.

 

Marigold I sure hope this is right. My histamine issues have been my worst symptoms thru my taper.

I’m terrified this will stick with me once I’m healed.

try fasting to repair your body.

 

Bad advice. If you suffer from a mast cell disease fasting will let your mast cells "explode".

There are several ways to diagnose a real mast cell disease, different depends on where you live (country).

In withdrawal the symptoms of an overawe immune system can look similar to a mast cell disease but its really not the same.

Also, doing the tests while being in withdrawal, can lead to wrong results.

I would for now avoid all food which triggers, which is the same for everybody: sugar, caffeine, wheat, chemical stuff in food and stick to a pure, natural diet. Same for cosmetics, make up, coloring hair etc. - the system is getting rid of a poison (benzo) already, its normal it will now over-react to anything on top. Be gentle to the system. Nutrition, not fast food.

 

Marigold I sure hope this is right. My histamine issues have been my worst symptoms thru my taper.

I’m terrified this will stick with me once I’m healed.

 

At the moment you are in withdrawal from a benzo. Your body is fighting against this new situation, all organs are under stress, the brain is starting to rebalance. Minerals are needed, enzymes are needed, hormones are not balanced yet, your gut cannot work properly, and and and...

As soon as your taper is done, the detoxing process will start to rise. Same situation, even more minerals needed, more stress for the body.

After a while, you will notice that your nervous system becomes more calm, very slowly. For me this was the time I could find the perfect kind of diet and start slowly with the supplements I lacked (proof: bloodwork). And then about a year later I noticed that my mast cells did slowly calm down.

This all needs time. But when we look closer it is not much time. A normal, healthy cell needs about 3-4 months to rebuild and recover. When you imagine how these meds have an effect on each cell, I can only gratulate my body for its excellent work to recover.

I do not know if it will happen for you exactly the same way and in the same time as for me, I just wanted to give you an impression how it was for me and give you hope and a background why the mast cells are firing so badly at the moment.

I have rheumatoid arthritis.  I've had it for thirty years.  It's basically an over-active and sometimes very agitated and confused immune system similar to your diagnosis.

 

I have managed to get it into remission many times over the years without medication using various things.. except that first year of benzo withdrawals.    It went nutzo then.  Like Marigold said, your body is fully stressed right now.  Your immune system is running about looking for the attacker.  In your case, it's settled on food as the bad guy.. or something in the food.

 

My guess is one of your triggers is the sulfa based preservative in many many processed foods.  That stuff is even in a lot of toothpastes and things like shampoo.  Even if your diet is whole raw foods, there will be pesticides and herbicides.  (a quick vinegar water bath will remove almost all pesticides and herbicides on raw veggies and fruits.)

 

Try and eliminate any chemicals in your life.  That is almost an impossibility these days but eliminate as many of them as you can. 

 

One of my best tricks for getting my immune system to behave in earlier years was to lift weights.  The immune system gets busy repairing the tiny micro tears in the muscle that naturally happen lifting.  It's like you give it a job to concentrate on and it settles down.  I just didn't have it in me to lift weights that first year off Xanax.  So.. I couldn't settle it down. 

 

In addition I avoided all red meats and alcohol during a flare-up.  I'd do a ton of research on whatever med they want to give you for this.  If this is a new thing since wd, you probably won't have an issue when you are completely finished.  It probably isn't a genetic thing.  If you had episodes prior to this, you might need to learn your own tricks for getting it to settle down.

 

Wishing you full health, darlin'.

 

Grandma Libble

try fasting to repair your body.

 

Bad advice. If you suffer from a mast cell disease fasting will let your mast cells "explode".

There are several ways to diagnose a real mast cell disease, different depends on where you live (country).

In withdrawal the symptoms of an overawe immune system can look similar to a mast cell disease but its really not the same.

Also, doing the tests while being in withdrawal, can lead to wrong results.

I would for now avoid all food which triggers, which is the same for everybody: sugar, caffeine, wheat, chemical stuff in food and stick to a pure, natural diet. Same for cosmetics, make up, coloring hair etc. - the system is getting rid of a poison (benzo) already, its normal it will now over-react to anything on top. Be gentle to the system. Nutrition, not fast food.

 

yes that too!!

I tested positive for mast cell only thing i was told was to watch the foods I eat meaning a low histamine diet . to take h 1 and h2 antihistamines. this can be caused by benzos since they block the enzyme DAO. after being off benzos for awhile it most likely will go away..

When I was taking benzos and in the first years after being med-free, any kind of blood test result turned out to be weird. Markers were high, next time low, - no one could understand. I think my system was in such a disbalance that the tests could only show a small picture of my body exactly from the day the test was done, next day anything might have been different.

Thats why I stopped all testing when I was in acute wd, cause the number of diagnosed desieases was ridiculously high:-) after withdrawal my results turned out to be normal again..