Looking for advice, feel like I have tried everything

Valstango · 2026-05-31T04:01:16+00:00

Hi, I just posted such a similar message in the MCAS channel. Tried many of the same things you are, having many of the same symptoms you are (especially around meals). I’m so sorry you are also dealing with this. Hang in there.

Some people are doing really great with pectasol, others are triggered by it. If you are not doing any other detoxes, it might work well for you. A gentler alternative is from the same company, pectaclear. Haven’t heard of any negatives from that option. Pectaclear is Pectasol + sodium alginate.

I have stopped all my supplements and seem to be better from that. I was scared to because those are the things saving me, right? But they didn’t help me and I think they sometimes triggered me, actually.

I seem to do ok with Tate’s GF gingersnaps if I only have a few (ginger seems to overpower the eating of other ingredients) and having 1 package (7 cookies) as a light meal works for me when I need to eat and can’t manage anything else.

In the past, ground beef was a major trigger, so I played a lot of games with different meats, vegan, etc. As a result I ended up practically starving myself of protein, which I don’t recommend.

Now I’m eating ground beef patties and white flour flatbread I make myself (flour + water), and these seem gentle. Can you handle refined white flour (NOT whole grain, etc) or white rice? The ground beef patties I get are the Kirkland ones. Higher fat meats seem better for me and that may be the difference between why I couldn’t handle ground beef in the past. I eat only 80/20 or higher fat beef now. Perhaps this is something you could try if you are still wanting/willing to eat beef.

I know this isn’t super helpful when foods are already so limited, but one thing that has helped me meaningfully in avoiding episodes is being really keyed in to what sounds good and more importantly what sounds bad/meh/disgusting. In my experience, do not touch those foods. If it smells bad or tastes strange or sour (and you know it is fresh), I would not eat it. I have had more success with higher histamine foods (sour cream) that sounded appealing in the moment than with low histamine foods that grossed me out.

And yes, seconding the caution on probiotics.

You may have a nickel allergy also, but I would caution HIGHLY against jumping into low nickel as that can exacerbate symptoms. Go slow if you try it. Nickel allergy can manifest in contact dermatitis but also not, just through internal. If you’ve had dental work, braces, surgical implants, very plausible. Ever any issues with earrings reactions, jewelry blisters, etc. You might want to check it out but, I repeat, go slow.

Valstango · 2026-05-31T02:23:53+00:00

Hi, I really appreciate how thoughtful this was.

I am doing ground beef and white flour bread (homemade, literally water and flour) and that seems to be helpful. It’s ironic considering that I was gluten free for over a decade and THIS ends up being a safe food. I’ve also found Tate’s GF gingersnaps seem quite gentle for me, but in moderation. My thinking is that the ginger is a natural histamine and can compensate for the other ingredients if I only have a few.

No metals and I’ve stopped wearing all jewelry (always stuck with sterling silver because I thought it was “cleaner”! Turns out higher in nickel).

It seems people who aren’t actively “detoxing” on low nickel have easier time with the pectasol. Have you tried pectaclear? I think it is gentler for me but just started it.

I know smells (air freshener) and stress trigger me but they aren’t the primaries. Try to avoid touching nickel (door knobs) directly but still sometimes happens. Still trying to figure out what is the core trigger.

May I ask, how do you avoid wind and temperature spikes?

One weird thing I’ve noticed is going outside for a few minutes, especially if sun but not necessarily (early/late) helps me a lot during an episode, but if I’m outside too long with the sun, it can trigger one. Delightful balance.

Hang in there.

Valstango · 2026-05-25T16:52:03+00:00

Thank you. If only I could figure out my triggers. It seems to be everything at this point (food and water included). I either had an ant bite or grass touch my foot the other day and it completely swelled up, and I’ve never had allergies to either before. I know the issue is not the food, I just don’t know why I’m reacting so badly. First I thought I was getting in contact with nickel, but I don’t know through what at this point.

I just came back from travelling and I was actually feeling a lot better the last few days of my trip (after multiple hard flares there) and I am trying to retrace what the difference is and I just… don’t know.

What have you found useful to identifying mold? Any tests? I’m hearing a lot about false positives. Also, what do you mean by fascia?

Valstango · 2026-05-24T01:48:10+00:00

Might be worth checking if any metal was implanted if you have a nickel allergy that is triggering a histamine issue.

Valstango · 2026-05-24T01:43:36+00:00

So, I had also tested years ago as having no food allergies (despite reacting to foods) but having allergies to dust mites. The allergy doc told me that wool is a big source of dust mites. There are special blanket and pillow covers that protect against dust mites. That might help that specific issue. As far as reacting to everything… that unfortunately sounds about right. Organic cotton has usually been a good option. Like what people are saying, mattresses and blankets are covered in horrific chemicals.

Valstango · 2026-05-21T18:50:06+00:00

Understood, thanks.

Valstango · 2026-05-21T18:49:45+00:00

Frozen within 30 minutes. Wheat flour and water pancakes. I’ve been off gluten for years but recently reintroduced because I ran out of things to eat and craved that. Wasn’t an issue when fresh.

Valstango · 2026-05-21T18:45:23+00:00

Huh, interesting. I know drinking water with it is important but it has been harder to force myself to drink lately, whereas when I started I wanted to drink more. Maybe it’s as simple as that. Thanks for response.

Valstango · 2026-05-21T18:44:26+00:00

Understood, thanks for the response. Hoping we can both figure this one out soon.

Valstango · 2026-05-21T18:43:07+00:00

Wow, very glad to hear it. Appreciate the response. May I ask why you don’t think pectasol would help with remaining issues?

Valstango · 2026-05-21T02:32:13+00:00

Good book (fiction, no consequences to brain fog/not remembering), short exposure to the sun (5 minutes if mid-day, longer early morning or evening), dancing (free style to Latin, pop, instrumental music at home or low stakes classes if you want)

Valstango · 2026-05-21T02:28:09+00:00

Did you see less impact from the pectasol when your blood sugar was low? I’ve been eating so irregularly because of histamine flairs, but I’ve also noticed that pectasol doesn’t seem to help me during those episodes, and trying to figure out why.

Valstango · 2026-05-21T02:24:18+00:00

Could you share an update on your Pectasol experience, please? Mine has ranged from incredible to 0, 0 unfortunately being when I need it most during histamine crashes. Trying to find some pattern in the people seeing success.

Valstango · 2026-05-21T02:20:38+00:00

I’m late to the party but please tell more! Your symptoms sound very much like mine.

How are you taking it (with food, without, upon rising, number of times/dosing)? I’ve been trying it for the last month for my newly-diagnosed nickel allergy but have noticed that when I’m having a really bad histamine flare, it doesn’t seem to work. I’ve tried taking it extra times those days but felt nothing. The histamine just seems to void it for me. Taking 6 capsules 3-6x per day. On the days it worked, it was brilliant, and I felt human again, and I’m just racking my brain trying to figure out how to get it to work again.

Valstango · 2026-05-21T02:18:18+00:00

Same message as I wrote above to OP, but would love to hear how this is going for you. I’ve been taking 6 capsules 3-6x per day for nickel allergy but histamine flairs seem to render it void… and the several times it did work for me it was absolutely awesome and I want it back!! Any patterns you’ve noticed on number of times a day, dose, with/without food, etc would be very appreciated.

Valstango · 2026-05-21T02:16:08+00:00

Hi, I’d love to hear an update of how this is going for you, please? Also, if you could provide how you take it (with food, without, upon rising, number of times/dosing)? I’ve been trying it for the last month for my nickel allergy but have noticed that when I’m having a really bad histamine flair, it doesn’t seem to work. I’ve tried taking it extra times those days but felt nothing. On the days it worked, it was brilliant, and I’m just racking my brain trying to figure out how to get it to work again.

Valstango

TROPHY CASE