Just Dermatographism or MCAS?

[Galixie]

So far things that have triggered reactions in me have been:
Clothing (pressure urticaria)
Hot water
Dairy
Red meat (maybe)
Stress
Raw pineapple being cut up

Not a single one of these things is a consistent trigger that always brings on a reaction.

On the plus side, I don't have to give up any foods or avoid anything in particular.

On the donwside, this means that I really can't manage to avoid a reaction. Or even know when one might occur.

Thankfully they've only been annoying rather than life-threatening so far.

I'm also not good at figuring out when I need to take an antihistamine for a reaction. For example, one reaction started with flushing on my neck followed by a burning sensation on my neck and face. After 15 or so minutes, the redness went away, but the burning sensation continued. Since the redness went away, I assumed the burning would resolve on its own as well. The burning lasted for hours.

 

[Galixie]

After multiple occasions where I've had allergic-type reactions after eating ground beef, I am coming to the conclusion that I will need to avoid this food. I've also learned that hot flashes can be part of an allergic reaction.

This sucks.

 

[Blake2e]

So far things that have triggered reactions in me have been:
Clothing (pressure urticaria)
Hot water
Dairy
Red meat (maybe)
Stress
Raw pineapple being cut up

Not a single one of these things is a consistent trigger that always brings on a reaction.

On the plus side, I don't have to give up any foods or avoid anything in particular.

On the donwside, this means that I really can't manage to avoid a reaction. Or even know when one might occur.

Thankfully they've only been annoying rather than life-threatening so far.

I'm also not good at figuring out when I need to take an antihistamine for a reaction. For example, one reaction started with flushing on my neck followed by a burning sensation on my neck and face. After 15 or so minutes, the redness went away, but the burning sensation continued. Since the redness went away, I assumed the burning would resolve on its own as well. The burning lasted for hours.

Unfortunately, you'll become a pro to timing when to take drugs the longer you have to live with this.

After multiple occasions where I've had allergic-type reactions after eating ground beef, I am coming to the conclusion that I will need to avoid this food. I've also learned that hot flashes can be part of an allergic reaction.

This sucks.

Ground beef sold in stores has a lot of built up histamine as result of going through the meat grinder. Better to avoid as it just adds more histamine to an already overloaded system.

 

[Galixie]

Unfortunately, you'll become a pro to timing when to take drugs the longer you have to live with this.

That's probably true. It would sure be nice to figure out how to get rid of it though!

Ground beef sold in stores has a lot of built up histamine as result of going through the meat grinder. Better to avoid as it just adds more histamine to an already overloaded system.

Yes, I assume that is what the main problem is. At some point I'll have to try a cut of beef, instead of ground, and see if I respond the same way. I'm going to really miss hamburgers though.

 

[Galixie]

I finally got to see the specialist and he thinks it is idiopathic MCAS. (It's remarkable how my body can produce so many different idiopathic problems.)

I am hopeful that getting the MCAS symptoms under control will help my overall picture. The doctor asked which symptom I wanted to focus on first, and I decided that the itching is what drives me craziest. So I'm going to up my antihistamine intake and see if it helps.

Getting to the appointment turned into a bit of a nightmare, but I guess that worked out in one sense: Stress is one of my triggers. I broke out into hives, which was convenient for showing them to the doctor.

He's fairly confident that it isn't mastocytosis, but he did tell me that he would issue a standing order at their lab for me to get a tryptase level run if I ever manage to be having a reaction in the vicinity of their lab during the lab's open hours (which is pretty unlikely).

I think I'm still processing the reality that I now have a diagnosis. Nothing in a practical sense changes by having one. I feel like I haven't quite wrapped my head around it yet though.

 

[Galixie]

Taking zyrtec twice a day really helped for a couple of months. It's not helping as much lately though. I keep having itching and flushing. I think it's mainly stress related (work has been piled on lately).

The doctor said I could take up to four zyrtec a day, but I rarely think of taking extra pills. He also told me in Nov that he would provide a standing order for a serum tryptase test if I have another reaction during lab hours. I had one last week, but I was too busy being itchy, fatigued, and unbearably irritable to even remember about potentially getting labwork done.

He also put me on singular, but I haven't noticed it doing anything (besides giving me more headaches). I have a follow-up in a week. I hope I can get to that appointment on time at least. I think I will ask about dropping singular. I'm not sure what else to ask though.

 

[Gingergrrl]

He also put me on singular, but I haven't noticed it doing anything (besides giving me more headaches). I have a follow-up in a week. I hope I can get to that appointment on time at least. I think I will ask about dropping singular. I'm not sure what else to ask though.

Can you remind me if you have tried Ketotefin or Atarax?

 

[Galixie]

Can you remind me if you have tried Ketotefin or Atarax?

I haven't tried either of those yet. (Except for ketotifen eye drops, which are wonderful.) The doc agreed that I should ditch singular, since it isn't helping. I'm going to up my daily zyrtec. He's also precribed gastrocrom.

I really know nothing about gastrocrom. Is it one you have tried? I guess it's a liquid that is taken up to four times a day.

 

[Gingergrrl]

I haven't tried either of those yet. (Except for ketotifen eye drops, which are wonderful.)

I agree and love Ketotifen eye drops (Zaditor in the US). I use them 2x/day on most days. I had used prescription eye drops for 20+ years but as soon as my MCAS doctor told me about Zaditor, I never had to use the prescription ones again and you can buy Zaditor at CVS or on Amazon.

The doc agreed that I should ditch singular, since it isn't helping. I'm going to up my daily zyrtec.

I never tried Singulair at any point in my illness but I have taken Zyrtec since 2014. I now just take it once a day in the evenings.

He's also precribed gastrocrom. I really know nothing about gastrocrom. Is it one you have tried? I guess it's a liquid that is taken up to four times a day.

I tried gastrochrom in 2014 but did not do well with it. At the time, I was having constant allergic reactions and anaphylaxis and ended up in the hospital. My doctor had hoped that gastrochrom would help but it did nothing for the allergic reactions and gave me GI problems. When I found my MCAS specialist, he immediately took me off gastrochrom and put me on Ketotifen which was the miracle med for me. My MCAS didn't go into remission until I started IVIG but Ketotefin was extremely helpful and made a huge improvement at that time.

 

[Galixie]

A bit of dark humor I thought of yesterday:

New weight loss strategy idea: Nothing but burgers!
Since ground beef is one of my very few consistent triggers, it'd be like bulimia but with a mast cell assist.

Note: I am just kidding. No matter how frustrated I get with my weight, I would never purposely induce allergic reactions. Besides, with my luck, it wouldn't work anyway.

 

[Galixie]

I tried an impossible burger (it's plant based, so there's no beef). I'm happy to report that it filled my burger craving without causing an allergic reaction.