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thebibliosphere · 4 years

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Thanks for posting about your pots. My niece's goes nuts around her cycle as well (working at a desk and it goes from 60's to 194 for no reason or hangs out in the 100's while she's sleeping according to her watch) and the doctors don't have a clue. Just keep telling us they aren't sure why such and such happens. No baseline for what to expect. Do you have trouble with foods too? She has a terrible time with processed foods, especially MSG or nitrates.

I’m sorry to hear she’s dealing with that. There is a condition that is often comorbid with things like POTS, and that is MCAS or Mast Cell Activation Syndrome, which stems from the same genetic disorder, Ehler’s Danlos Syndrome, which can often cause POTS to occur as well. It’s sort of like the trifecta of genetic mutational fuckery.

I have all three of these, and while I was born with EDS and didn’t know I had it until last month when I finally got to see a specialist who knows how to accurately diagnose it, I had been showing symptoms of MCAS and POTS for decades. And one of the hallmarks of MCAS is problems with certain foods, specifically to high histamine foods, which include very highly processed foods (hint: it’s the preservatives) MSG and most foods with naturally occurring nitrates.

I’m going to put all of this next bit under a cut because it is long and very triggery for some people to read, but I think it might be vital that your niece looks into MCAS.

So here’s the deal with MCAS. I test negative for 98% of the foods I react to, and this is because the allergic reaction is caused by my mast cells being wonky. The reason it doesn’t pop up as an allergic reaction is that allergists will primarily look for an IgE reaction (usually occurs after immediate exposure to trigger) vs an IgG and IgA which slowly build up in the system over time, and will eventually lead to a mast cell degranulation episode, which can be extremely dangerous, as some of us will experience anaphylaxis. I can eat something with MSG and be fine at first, but then gradually over a couple of hours, I will get sicker and sicker and become more symptomatic. If my body is overloaded on histamine, which it was for many, many years, I would go into what appeared to be idiopathic anaphylaxis, or “anaphylaxis with no known cause”.

Needless to say, this is terrifying to experience, and if your niece is having symptoms similar to mine, especially with food issues, she needs to speak to a doctor about this asap because mine went from “wow I get migraines when I eat something with MSG in it” to “nearly starved to death in two years because I lost nearly every single food group” because the MCAS destroyed my body. I was living on filtred water and oats for nearly two years, with occasional bouts of being able to eat plain chicken. It was not fun. Hopefully, your niece is not as badly affected as I am, but the MSG and the nitrates thing just set the red alarm bells going off in my head, cause those used to be my only two main food issues, and now I have a bajillion of them.

It wasn’t until I saw a dietician last year, who was able to diagnose me with histamine intolerance disorder and set me on the path toward obtaining my MCAS diagnosis, that I got any sort of relief. I did a histamine elimination diet with her guidance, and in the last year I have gone from being able to eat two things, to being able to eat 14 different things and am recovering, and it is hoped with continued MCAS treatment I will soon stabilize enough to be able to eat a lot more. Getting my MCAS under control has also brought a great deal of my POTS symptoms under control. The reason mine flares up so badly around my menstrual cycle, is because I’m allergic to my own hormones (estrogen) and it causes my mast cells to go haywire, making me more symptomatic overall. This is also a common sign of MCAS, or at the very least, a tendency toward histamine intolerance which is like, the lower end of the MCAS spectrum.

If you want to read more or give her some things to look into before speaking with her doctor, here are some good sites:

https://www.mastattack.org/

https://www.mastcelldisease.com/mcas-doctors/ (this whole website is good, but Michelle’s directory of knowledgeable MCAS doctors is very useful)

http://www.dysautonomiainternational.org/

and also https://healinghistamine.com/ sadly Yasmina is no longer with us after a protracted battle with breast cancer, but her website remains an invaluable resource for people trying to figure out how to feed themselves with histamine intolerance. She was also far ahead of the research, and a lot of the studies coming out at the moment are validating a lot of her theories and I truly wish she were still here to see it.

I know I just dumped a whole crap ton of scary-sounding stuff on you, and I apologize for that, but when you asked about food, well, this is kinda my whole schtick. The important thing to know is that with adequate care and lifestyle changes, it does get better.

I’ve been in remission from the worst of my MCAS symptoms for over a year now, and while I always need to be vigilant, I feel like I’ve got enough of a handle on it to stop living my life terrified. Of course, it also helps that I now have doctors who know what the frick is going on. Always very useful.

If her POTS symptoms are more debilitating than her food allergies/issues, then focusing on that might be more urgent and she needs to talk to a cardiologist about POTS, but just be aware that a lot of POTS symptoms are actually an MCAS symptom.

I hope this wasn’t too alarming and was in fact useful. And if you ever want to ask me more things, please feel free to do so and we can get a dialogue going. All the best and take care, and give my best to your niece as well.

#chronic health tag #long post #mcas #life with allergies #pots #life with mcas #postural orthostatic tachycardia syndrome #histamine intolerance #links #marvelousmindloki

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