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WhiskeySpaceBear t1_ix4dgu3 wrote

Reply to comment by Waydarer in Lung infections caused by soil fungi are a problem nationwide by preppythugg

Maybe you developed a food intolerance. One's immune system can change as they get older (or you are just older so it's hard to shrug off symptoms) and consider that something your eating could be triggering a low grade chronic immune response. It happened to me with wheat (surprisingly it's not gluten as I can eat barley she rye).

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terrytapeworm t1_ix4z5yl wrote

I had this happen with gluten and then, suddenly, a bunch of other foods (sodium phosphates, grapes/apples, natural flavors, almonds, etc.) and my symptoms got worse and worse. Eventually I had extreme high and low blood pressure swings, difficulty breathing, kidney problems, chronic dehydration, my eyes started getting worse, my skin was bright red and painful, every cell in my body was in constant pain, cluster headaches (aka suicide headaches), edema, my teeth essentially disintegrated, I couldn't leave the house if the sun was out or the temp was above 78 degrees without almost passing out and dying, I would also get an enlarged spleen? Or something in that area? Every few days. So basically just any symptom, I had it. Could barely stomach water and definitely shouldn't have been working a physical job.

Turns out, it wasn't actually autoimmune per se. It was MCAS, which means I was actually experiencing anaphylaxis and other serious symptoms any time I came into contact with a trigger (and I was developing new triggers every day).

So aaanyway, and I hope you don't mind me using your comment to spread awareness: If anyone here is being plagued by constant, seemingly-autoimmune symptoms and getting nowhere with endless blood tests and referrals, consider that it may be MCAS. I wouldn't have known that's what I have if someone hadn't commented and said "Hey, that sounds like the disease my sister has," and I was looking up my symptoms every day for 2 years without ever hearing about MCAS, despite having just about every symptom. There's no definitive test for it and doctors constantly use the wrong information (for a similar disease called mastocytosis) to try and test for it, but if you're, like, dying like I was, you could try taking an H1 and H2 over the counter antihistamine and see if it helps with your symptoms, and then use that information to work with your doctor.

Anyway, thanks for giving me a chance to piggyback off of your comment!

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nomellamesprincesa t1_ix6y5fy wrote

I had considered that, because I do in fact constantly have autoimmune-like symptoms that they can never find a cause for. But my doctor seemed to think MCAS was not a thing? Also anyhistamines don't seem to go much of anything for me, but maybe they're the wrong ones?

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terrytapeworm t1_ix8qd7s wrote

A lot of doctors don't think it's real because there isn't a definitive test for it. IIRC, there are possibly thousands of places on the KIT gene that can have a mutation resulting in MCAS, but they can only test for like 8 of those locations so far. Doctors also don't always consider symptoms a criteria for diagnosis, despite how severe the symptoms are.

If at all possible, I'd go to an allergist. It definitely took me several "second opinions" because I had some doctors try to tell me that I was dying because of "anxiety" and then attempt to give my treatment for fibromyalgia which obviously didn't work.

And it is possible that you could be allergic to certain antihistamines! Medication is one of the top triggers for MCAS. I myself recently switched to a compounding pharmacy to get my meds hand-made because I am allergic to so many things (and it was surprisingly cheaper than regular pharmacies). Also a lot of OTC antihistamines have dyes and gluten in them, which are top triggers. So I wouldn't totally rule it out yet, it's definitely hard to pin down.

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nomellamesprincesa t1_ix8u0mh wrote

I did get a pretty extensive allergy & asthma test recently which showed nothing wrong, would something like that show any results? I also went to an allergist years ago, he said I had an intolerance for biogenic amines, but then told me to cut out a bunch of foods that definitely aren't triggers for me. I had a bad bout of IBS at the time and there were things that clearly made it worse, but I think it was mostly stress-related, I was in an unhappy relationship and once that ended, so did the IBS. My main symptoms now are near-constant post-nasal drip that I've had since I was 18 (for which the only possible correlating factors I've found were starting birth control, but I've since switched birth control and it's made no difference what so ever, and moving to the town where I still live now), and constant relatively minor inflammation issues, like I've had a bunch of tonsil infections the past few years, some bouts of food poisoning that wouldn't go away on their own, and cold sores that got so bad I'm now on permanent meds because I kept getting eye infections etc.

But yeah, I'm keeping it on my radar just because everything else has been ruled out by now, I think. They've checked my immunology as well and found nothing odd.

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WhiskeySpaceBear t1_ixbwou1 wrote

No worries. I actually thought I had MCAS but I didn't mention it because it's not really easy to diagnose and because it's not really necessary to confirm. I had an "immune system test" by everlywell and it said a few things but said, interestingly, wheat but not gluten. I tested it. Wheat makes me sick, primarily asthma and GI stuff, barley and rye do not. I used to think I was gluten intolerant but I'm not technically. I say I am because it's easier to explain to a waiter or acquaintance than the true details. Eat what makes you feel good and avoid processed foods is a good model for health.

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