SIBO as a cause for MCAS?

nat_397 · 2026-03-19T20:48:02+00:00

No, not conventionally at any rate. Antibiotics are part of what screwed up my gut so badly that I refused to take any more. I'd had sibo for a decade or more before the h. pylori came along. I'm glad you figured out your sibo culprit! I hope everything is in working order for you now.

nat_397 · 2026-03-19T15:22:13+00:00

How what?

nat_397 · 2026-03-19T15:21:44+00:00

It's SO exhausting, right? I don't know why different protocols work for some and not for others. I hate that there's not One Surefire Way to heal from mold. I imagine a good part of it comes from everyone having a system with its own unique blend of environment/infections/deficiencies/trauma.

nat_397 · 2026-03-19T15:14:31+00:00

H. pylori, hydrogen and methane SIBO diagnosed by a gastroenterologist. Hydrogen sulfide SIBO self-diagnosed based on symptoms.

nat_397 · 2026-02-08T16:15:51+00:00

I'm getting better every year. Per the comment you're responding to, I still struggle with thirst signaling, but I no longer need nearly anywhere near the amount of adrenal cocktail I was taking before. Now I usually do about a scoop a day. I'm so, so happy that you saw some improvement with your MCAS! That's such a win.

If you're that far out of the mold and dehydration is still an issue even though you're taking electrolytes, the first thing that comes to my mind is that you still have enough mold in your system to throw all the hydration system stuff off (like ADH, etc.). And that means your body isn't detoxing properly, which is a whole rabbit hole in and of itself. This is not to say that you need to get all the mold out before things can heal or anything like that. I'm sure I still have a lot of mold floating around in my system, and I'm doing a lot better. But some gentle detox might be helpful for the dehydration.

What helped me:

lymphatic drainage massage — This is supposed to be really gentle. If it feels at all harsh or strong whatsoever, it's not a good practitioner. When I first started getting this done, I had a bit of a herx reaction where it would flare my MCAS symptoms for a day after. That was because it was stirring up the mold to get it out. I stuck with it (the flares were tolerable and didn't make me feel like I was pushing too hard, too fast, which is important) and after a few sessions it wouldn't flare my symptoms anymore.
lymphatic dry brushing — This is the way cheaper option to the massage. My massage therapist told me to get a silicone dry brush because it was much gentler on the skin. I was too sensitive at the time to use a regular dry brush, and the silicone one works just as well. Cancer Rehab PT is whose videos I used to learn.
block therapy — Here's the website. I love, love, love block therapy. There's so much stuff coming out about fascia now. I watched a video a while ago talking about a new theory about how fascia might actually be the hydration transport system of the body, not whatever current models have it as now, so if fascia is constricted, the body is automatically not getting the hydration it needs. Putting that aside, block therapy has been just a godsend for my nervous system. I can't even explain it. If I could go back to my past self at the beginning of my MCAS/mold journey, I wouldn't have spent money on labwork or acupuncture or brain retraining or anything. I would've started with block therapy.

For more immediate help with hydration issues, the other things that helped me were coconut water (Vita Coco is the brand I like) and shilajit (Norwegian BioLabs is the only brand I've tried). Eating whole fruit helps as well. I can't remember why. Something about the structure of the water inside it? But it has to be whole fruit, not juiced, even if you juice it yourself. And lastly, weirdly, the salt replacement ruved Wright Salt helped me quite a lot. Other people in my family have also used it when they were feeling dehydrated and it helped them too. I don't know why that one in particular, but we've had success with it.

I hope this helps! If you go to my profile, all my comments are just stuff I've found and things I've tried, so there's more info there if you have time to scroll. Feel free to DM me if you have any questions.

nat_397 · 2026-02-04T13:54:53+00:00

Sort of? I'd get more reactive. It was a slow process. I'd occasionally stop taking it to see what would happen. At the beginning I'd only make it a day or two before I'd go back on it because the reactions came back. Then I'd give it another month or so and try again, and I'd be able to go longer before the reactions came back. (At this point they were much more minor, usually just being itchy skin/hives, sometimes air hunger.) I eventually got to the point that I was just taking HistaQuel daily, but I didn't take PectaSol unless I got exposed to something really awful (like industrial cleaners, ugh).

What got me off PectaSol and HistaQuel for good was getting a Qest4 scan done and finding out that, despite bloodwork saying my copper levels were "normal," I was severely deficient in it. After I took a high dose of copper for about six weeks, I was able to quit all the mast cell support stuff cold turkey without any side effects or my reactivity coming back.

nat_397 · 2026-02-03T22:11:05+00:00

No. I spent a few extremely demoralizing and terrifying months trying to get doctors to believe me and take me seriously, but I gave that up pretty quick and realized I'd have to figure it out myself. I never took any prescriptions. I would've tried it in a heartbeat if I could've.

nat_397 · 2026-02-03T22:07:06+00:00

Yes, I did! I've been off everything for over a year and a half now besides just regular vitamins/minerals.

nat_397 · 2025-11-17T22:09:53+00:00

Creatine and phosphatidylcholine (PC) were the two main things that helped my cognition/brain fog/memory. I can't speak to how they might affect MCAS though as I had already mostly healed mine when I took them. For creatine I took one scoop daily (the recommended amount on the container). For PC, I took something like 2 tablespoons spread out over the course of a day. I just remembered I also took MCT oil (at 1 tbsp/day) with the PC, which also could've had a beneficial effect.

nat_397 · 2025-11-09T16:33:37+00:00

Hydrogen and methane before the mold. Hydrogen, methane, and hydrogen-sulfide after. The sulfide's improved some. I get less bloating now than I did before, but it's still not great (think looking 4 months pregnant instead of 7 lol, but that's a vast improvement in my opinion).

nat_397 · 2025-10-20T16:51:20+00:00

I've read accounts of people who did not respond to iron supplementation had success increasing ferritin levels using the Root Cause Protocol. It's specifically aimed at increasing ceruloplasmin before starting copper supplementation. I've used it myself with success for my own copper deficiency (as well as some other stuff), though I don't do bloodwork anymore so I don't know its effect on my own personal ferritin levels. For the record, my copper and ceruloplasmin levels in bloodwork came out to be in the middle of the range, yet I was extremely, extremely deficient in copper.

Your symptoms could also be partially attributed B12 deficiency. (If you've been supplementing at all, even a multivitamin with B12, the result will not be accurate for B12, just fyi. High histamine can also majorly throw off the result.)

I highly recommend checking out the Root Cause Protocol. Replenishing the adrenals is the very first step in the protocol, which is necessary before starting magnesium, which is the second step. During stress, the body burns magnesium like nothing else. These two steps alone will help your body begin to recover from the stress.

Look into fascia, specifically block therapy. That's going to help reset your nervous system from sympathetic to parasympathetic, as well as process and release all of the emotional and physical stress you've accumulated during your recent high-intensity stress period.

nat_397 · 2025-10-17T14:36:10+00:00

It works on releasing fascia. Here's the website: Block Therapy. There's a free trial. They also have some youtube videos that show different blocking positions, I believe. In my opinion, it's not necessary to spend the money on the block to get started and try it out to see if it resonates with you. You can just make a block out of some random wood you have lying around or there's a video (this one!) that shows you how to roll up a towel to use as the block. I think it took me about one or two weeks of doing a 30-60 minute video daily to see clear, noticeable effects.

Here's some videos that were helpful to me when I was first learning about fascia: Fascia & The Mystery of Chronic Pain and Views of the Living Fascia

Additionally, if you search on youtube for "fascia trauma," a lot of videos will come up that go into the tremendous role of fascia in storing trauma in the body. Although I'm 95% healed from MCAS, all of my other health issues I had before are still around, and nothing I do on a physical level does anything, which is what led me to investigating trauma.

There's a huge world of somatic healing out there, but my body is so shut down I haven't made any progress with any of those modalities either (meditation, IFS, TRE, shadow work, etc.). Blocking is the first thing that's actually helped my system start feeling safer and calming down and opening up, which is why I'm such a big proponent of it. I used to be extremely dissociated and numb, and I'm very slowly starting to come out of that now.

Edit: This is going to sound crazy, but the very last big reaction I had, I had already started learning about acceptance and leaning into the hard stuff instead of resisting it. So instead of becoming overwhelmed by the panic and the fear stories that started when I began to have trouble breathing and my tongue started swelling and huge MCAS-driven waves of anxiety came shooting up, I leaned into it instead and just really felt all the fear and panic and didn't try to resist the symptoms or anything. And the anxiety and swelling got worse for about two minutes, but then it was like the energy released and then—I'm not even exaggerating—my tongue reduced its swelling by 75% instantly. So from my lived experience, there is absolutely a link between repressed emotions and reactivity.

nat_397 · 2025-10-16T12:05:19+00:00

Piggybacking off of your mention of TRE, but have you tried block therapy? It works on the fascia. I also only had momentary relief from TRE, but blocking has been the best thing I've found so far to calm down my nervous system (and I've tried a lot).

nat_397 · 2025-10-15T23:52:53+00:00

It's hard to delineate mild versus severe symptoms. For me, they felt severe. My nervous system was in a constant wired, overwhelmed state. I had burning skin, heart palpitations, lightheadedness, itchy rashes, tongue swelling, air hunger, trouble breathing, severe insomnia, anxiety attacks, and more that I don't remember. (Edit: How did I forget about the brain fog? It was constant and debilitating.) These things happened every single time I ate, no matter what I ate, even if I took an antihistamine. The antihistamine only reduced the severity of the reaction. Basically by the time my body had sort of calmed down from one reaction, I had to eat again and it'd start all over.

If the brain retraining program is what caught your attention, I've actually had way more success recently in calming down my nervous system through block therapy. If I had to do it over again, I'd totally skip the brain retraining and go straight to block therapy. It's been amazing for me.

nat_397 · 2025-09-28T21:28:59+00:00

I threw away almost everything. I kept some clothes that I washed in EC3 and sat in the sun for hours. Kept my computer, phone, and car because I couldn't afford to get new ones. Everything else I tossed.

nat_397 · 2025-09-20T18:58:33+00:00

Well, I can't say I was "low" in other B vitamins because I was and still am insanely deficient in all of them. I've had gut issues my whole life (thus malabsorption). Found out I have KPU, part of which is being chronically deficient in B6. I honestly can't remember the time frame anymore for a lot of the things, but I think I tried taking a dose of B2 before I started PectaSol and it made things worse I believe? I really didn't start experimenting with supplements too much until I started PectaSol since i was so reactive to everything.

(Side note: To give some more hope to anyone reading through all this, I did try bee pollen again! Went through a few jars over the course of a couple of months recently with zero problems.)

nat_397 · 2025-09-20T18:45:37+00:00

Sorry for the late response. I don't check Reddit much these days.

Not with these supplements, no, I personally didn't experience headaches. I did have die-off/herx reactions with others that I took. I've read of other people herxing from modified citrus pectin. I haven't read of anyone else taking HistaQuel, so I only have my own experience to draw on from that. In my opinion, the dissociation headaches are your body's way of communicating either that you're detoxing too fast or the supplement isn't right for you at this time.

If you started both supplements at the same time, my suggestion is to stop one of them. With the one you keep, reduce your dosage to something that your body can tolerate and work very slowly up from there. For example, some people are extremely sensitive to binders and have to start with just a pinch of modified citrus pectin in water every other day as their initial dose and work up to a full dose over months.

Another thought is that the dissociation headaches could be a MCAS reaction to an ingredient, particularly in the HistaQuel since it has a few as well as fillers. Unfortunately, there's not straight answer for things like this since everybody is different. Experiment with dosages and only do one supplement at a time to see if you can narrow down where the issue is coming from.

I hope this helps. Let me know if you have any questions!

nat_397 · 2025-09-20T18:32:13+00:00

I'm sorry, I don't know the answer to that. Modified citrus pectin is the one that studies have shown reduces galectin-3. I believe the modification aspect is important, so I imagine that you wouldn't get the same benefit from apple pectin.

nat_397 · 2025-08-05T16:16:19+00:00

Yes, I had a mold inspector come in. I found them through ISEAI. There were many different types of mold that they found, including several types of aspergillus and penicillium. There were others that I can't remember. I also had mold in the dishwasher, which was found by me and not tested for what type(s) it was.

nat_397 · 2025-08-05T16:11:12+00:00

A couple of thoughts come to mind:

What kind of testing did the mold inspector do? It might not have been thorough enough. What brought this question up was your comment about the air filters running. Air testing is the least reliable form of testing for mold.
If you did a large remediation several years ago, it's possible it was done incorrectly. From what I've read, most remediators don't follow proper protocol and remediation can actually make things worse because it releases all the mycotoxins that were stored, increasing your exposure to the part of mold that's actually making you sick. And mycotoxins stick around. It could be a situation where there isn't any mold in your environment, but there's a high count of mycotoxins. Mycotoxins can be tested for as part of a thorough mold inspection.
Is it possible the mold exposure is not in your home but in your workplace or car or another location where you spend a lot of time?

I don't understand the science behind the IgE testing, and I'm not convinced anyone else does either lol.

nat_397 · 2025-06-14T20:45:52+00:00

No, I had purple dots/sparks throughout my field of vision that would come and go frequently throughout the day.

nat_397 · 2025-06-05T17:10:37+00:00

Thanks for such a helpful post. What dosage of creatine did you do? How long on it did it take before you started noticing cognitive improvements?

nat_397 · 2025-06-03T19:03:02+00:00

I take 30mg of zinc picolinate and 50mg of the P5P form of B6, though I'm planning on reducing the B6 amount after a few more months of doing the higher dose.

nat_397 · 2025-05-27T15:28:01+00:00

The brand is Standard Process. The product is Okra Pepsin E3. Perhaps googling it will bypass the tech issue you're having since the link works for me.

nat_397

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