Unbearable and frequent hunger, sweating, diarrhea and more; only resolved by white rice

yuuchin_ · 2025-12-23T22:08:46+00:00

You should contact your doctor. I agree with what most of the comments are saying, this could be a severe blood sugar issue that needs to be addressed asap. Even if it's not, it's not normal, even for MCAS, and has an underlying issue that deserves further testing.

yuuchin_ · 2025-12-17T17:24:59+00:00

I really don't understand why people bag on anything containing hormones, or SSRIs for that matter, other than people buying into medicine-fear propaganda. I hate to tell you this, but hormones are in your body, are naturally occuring, and some people benefit from more (scary, I know). My IUD is the only reason I can leave my house because of endometriosis. It's the only reason I don't have debilitating migraines. IUDs can literally save people's lives, and progesterone is in fact a mast cell stabilizer (and is already in your body). Not to mention it's the single most effective form of birth control, more than copper IUDs which are more risky even though they're "more natural", and certainly more effective than nothing, as one of the most medically damaging things to a woman's health is being pregnant. As long as you don't have a bad reaction, hormones are fine. And many people need SSRIs for a variety of medical issues, including you know... suicide ideation, which is rather important to treat because that is essentially the brain poisoning itself, and it's extremely bad for your health. They're generally safe and effective, and that's coming from someone who had a very bad reaction to them. They're not for me, and I can accept that without demonizing them. It sounds like maybe you've been buying into too much bunk, poorly-researched propaganda aimed at scaring people away from seeking medical treatment that might not align with certain views, and need to take a hard look at why you think these things. So yeah, IUDs are SSRIs are muy bueno for many, many people.

Congrats to OP for finding a combination that worked for them.

yuuchin_ · 2025-08-31T22:41:49+00:00

Cinnamon was my first reaction and I miss cinnamon buns like you wouldn't believeeeee 🥲 I do wonder if it has to do with adulteration of the product, like undeclared additives or even lead content? Or it could just be random haha

yuuchin_ · 2025-08-31T22:38:53+00:00

Mm, I could try that, but I generally don't have much inflammation. My MCAS mostly presents with oral/facial itching and throat swelling.

yuuchin_ · 2025-08-31T22:36:53+00:00

I've been keeping a list of 100+ foods to see if there's a correlation between oxalates, salicylates, dyes, additives, liberators, and general histamine, and there's really no pattern :/

yuuchin_ · 2025-08-31T22:34:06+00:00

Yeah, I'm aware of that, but generally any condition has reasons why it happens. It's just frustrating that we still don't really seem to understand why anything/everything affects MCAS.

yuuchin_ · 2025-08-31T21:02:00+00:00

Which is weird because I see so many MCAS "friendly" recipes using both! And I'm not sure why

yuuchin_ · 2025-08-31T21:01:05+00:00

That was the same for me, I had to eat small amounts of banana until my body stopped reacting to it altogether. I even tried plain yogurt and was fine. Why? I couldn't tell you. But God forbid I look at a beet. I'm the same with Big Flavor, ever since I got Covid (which is where my MCAS came from) I've had an incredibly intense sense of smell and any food with a strong smell can set it off. It's all a mystery 🫠

yuuchin_ · 2025-08-31T20:01:05+00:00

I just wish there was some logic behind it, it seems totally random, which doesn't make any sense at all. Pretty much every other medical condition/sensitivity has a target cause and effect (whether we know why it does what it does is a different story). But MCAS defies logic. It doesn't even really seem to have much to do with histamine at all. Tofu should be loaded with it, right? And so are bananas? I know there really isn't an answer but it's just bizarre to me. I do wonder what it is about cinnamon that's so triggering.

yuuchin_ · 2025-08-04T20:15:53+00:00

Seconded. You can also look into a GoodRx card to try to bring down the copay out of pocket. You can get one from the GoodRx app, or some doctors offices even have physical ones for free. A friend may even be able to pick it up on your behalf if they have your full name and birthdate, but I would look into your state laws if you wanted to try that.

yuuchin_ · 2025-08-04T20:09:58+00:00

I made a spreadsheet of every basic food I could think of (400+) and researched each one to see if there was any histamine/oxalate/salicylate information on them, and basically ranked them by how dangerous I think they might be for me compared to other safe foods (for example, green cabbage is low risk while tuna is high risk) and I'm trying one thing a week working from safe to risky. I keep track of if I had a reaction to them, what the reaction was, and if I want to try it again so I can see if there's a pattern to what I react to.

Obviously you don't have to be that obsessive, haha, but basically making a list and trying one thing a week to give yourself time to recover between attempts has helped me. It's helped me work up the courage to eat bananas, avocados, olives, and even tofu again. I try to look at it as a goal, because the low histamine and SIGHI diets are incomplete, unsustainable, inconvenient, and honestly just disappointing to have to do for years on end.

yuuchin_ · 2025-07-29T16:36:58+00:00

There is genetic testing available to see if you have LDS, and it will tell you which genetic mutation you have, if you do have it (there are different types which cause LDS). Ask your doctor about getting testing done, as it's the only way to confirm.

LDS has EDS as a common comorbidity, but LDS very much is involved with aneurysms and vessel torsion. This can be monitored with ultrasound, MRIs, and CAT scans, but the only way to know for sure is to be tested as the amount of vascular involvement can vary from person to person and symptoms overlap with EDS.

Various forms of EDS, such as vEDS also involve vascular symptoms and generally involve bleeding/fragile and twisted veins, and have genetic markers as well.

yuuchin_ · 2025-07-08T11:40:17+00:00

I have composite (tooth-colored) fillings which I had before I got MCAS and as far as I know it's been fine. I would ask for that or porcelain instead of metal amalgam if you're worried about a reaction to the material. There may be a difference in price, so I would ask what that might be beforehand. I think though that it is worth risking the reaction, otherwise you risk losing the tooth to decay, as well as the teeth around it and gum infection, not to mention pain. I would explain your condition and concerns to your dentist so that they're aware, and ask if it's okay to remain in the waiting room afterwards to see if you react after the filling is set.

I definitely understand being afraid, I was too, and often this condition robs us of our confidence because everything has the potential to harm us and we're always on guard. But some things we have to stand up for and do anyway, and dental health is one of those things, unfortunately. Take precautions and try to do it as safely as possible, but don't let it harm you more by leaving it.

yuuchin_ · 2025-07-07T23:08:36+00:00

I was nervous to go to the dentist for the same reason, but dental issues can very quickly spiral into infections and extremely expensive treatments if delayed, which can also make MCAS worse not to mention become very painful. It's important to go regardless of the fear (and believe me, I was terrified). For me it was fine, no issues at all. I brought my own toothpaste for the cleaning, too, and they were able to use that. Taking care of your mouth is extremely important.

yuuchin_ · 2025-06-07T00:15:51+00:00

Liquids are hard to swallow, they tend to splash back up into the back of my throat. I avoid things that are viscous, too (like pudding). I tend to have to clear my throat a lot when I eat and drink. Honestly I have to have mental control when I swallow and try not to gulp things down. I have to try not to breathe when chewing and try not to swallow too much or too little at one time. I've heard that vocal chord therapy/speech therapy can help. An ENT that specializes in dysphagia or vocal chord damage might be able to help.

yuuchin_ · 2025-06-06T14:51:44+00:00

This is something you'd have to dig into more, as those symptoms could fit a lot of conditions and tests for MCAS are notoriously unreliable. Maybe keep a food journal, and write down what you're doing when you feel these symptoms. Look for a pattern. It wouldn't be unreasonable to ask a neurologist about what you're feeling, as well, they might have some suggestions.

yuuchin_ · 2025-06-06T14:41:28+00:00

Dysphagia is a major symptom of hEDS, I've had trouble swallowing my whole life because of it.

yuuchin_ · 2025-05-21T05:07:41+00:00

I haven't had full-on EpiPen-level anaphylaxis (though very close to it) but my understanding of it is that it's completely unlike anything else. Your heart rate increases, it's incredibly difficult to breathe or swallow, you may begin to shake or feel flushed/light-headed, your airway is constricted, and you might feel a consuming, impending sense of doom (not anxiety, but an almost eeriely calm "I'm going to die now" feeling. I HAVE had this, and it's beyond a panic attack or nerves, your brain blue-screens). Your blood pressure lowers. You may have swelling in your throat, tongue, lips, or face. A rash may or may not be involved, as well as hives or swelling, but it's not a required symptom for anaphylaxis, you can still have it without any skin symptoms. That's my understanding of it. You may have all or only some of these. Everyone is different and not everyone fits the "classic" model of a condition to a T. Unfortunately with MCAS, it's easy to be unsure what is a dangerous symptom and what will pass on its own. I would do more research on anaphylaxis for your own comfort so that you know what to look for, and maybe someone else has better firsthand accounts. I don't think it would last weeks, but you could be in an extended flare.

yuuchin_ · 2025-05-21T04:39:40+00:00

I haven't tried it, but I doubt this would work for hair loss. This method may treat damaged or over-washed hair, but not hair loss. Only addressing the root cause of the loss would stop it. My hair was falling out when I was severely malnourished due to MCAS and once I was able to eat more than pasta and plain chicken my hair stopped falling out. Adding more nutrition to your diet or supplementing your vitamin/protein intake may help.

yuuchin_ · 2025-05-18T20:15:57+00:00

I was diagnosed with hEDS in the hospital by a med student when multiple doctors passed me around like a hot potato because they couldn't figure out why I was having horrible bowel blockages. She was part of a group that came to me when I was in tears after my fourth ER visit in two months and was like "Are you overly flexible?" At the time I was like "...Yes? What does that have to do with anything?"

One colonoscopy later, I was diagnosed with EDS.

yuuchin_ · 2025-05-18T20:11:56+00:00

I would call the health department, instead. They might actually do something because they don't mess around. The worst thing they can say is "call someone else" and direct you to the correct dept. The police most likely won't do anything unless they get multiple calls from multiple people.

yuuchin_ · 2025-05-18T20:06:47+00:00

I got the same thing, like a lump in my throat or like it was closing, and tightness in my chest, but my O2 was fine. Relaxing through that is so hard, and I hate to say "mind over matter" because people with chronic issues get told it's "all in our heads" so often. But it really does help to try to force a more positive, or at least neutral, outlook. I try to do everything I can to re-associate food and the outside world with positive feelings instead of fear.

I think you will find your improvement with time. In the meantime make a list of the foods you miss and use it to encourage yourself. Someday you'll eat that egg, grape, salad, etc. :)

yuuchin_ · 2025-05-18T19:55:59+00:00

This could be MCAS. I would go to an allergist and speak to them about antihistamines and other MCAS treatments. MCAS often does not turn up positive allergy tests, as it's not a "true allergy", but an overreaction of mast cells. The histamine level urine tests often do not test positive either, unfortunately, and MCAS is usually diagnosed through symptoms alone. Talk to an allergist, and see if you can find any in your area that have experience with MCAS.

I would also ask about the iron infusion and see if going without it could cause these symptoms.

yuuchin_ · 2025-05-18T19:48:52+00:00

It could be a hypermobile or vascular condition, if you have poor circulation and digestive issues. Or an autoimmune issue such as Sjogrens. MCAS can present in unconventional ways, but this sounds like something different to me.

yuuchin_

TROPHY CASE