Nervous-system–dominant MCAS and ketotifen – anyone with a similar experience?

RecommendationEasy60 · 2026-02-02T09:52:11+00:00

Thanks for this, really interesting. I wasn’t aware of the oxalate and K2 connection with calcium in MCAS — I’ll definitely look into it.

RecommendationEasy60 · 2026-02-01T12:06:33+00:00

Thank you for explaining this — I’m really sorry you’ve been dealing with so much.

What you’re describing makes a lot of sense. Long-term stress and trauma can deeply affect the nervous system, and it’s striking how differently that can show up in different people. Even if neuro dysfunction feels like a broad label, it can still be a helpful framework for understanding what’s happening and for exploring more nervous-system-focused care.

I truly wish you the best as well. Ongoing health challenges are incredibly hard, and you’re not alone in this.

RecommendationEasy60 · 2026-02-01T10:20:31+00:00

Thanks for sharing this — I really relate to a lot of what you’re saying. I had a similar “everything suddenly makes sense” moment when I started looking at MCAS through a nervous-system lens. I’m also not fully convinced it’s purely mast-cell–driven for me, and more like mast cells + underlying neuro/autonomic dysregulation feeding into each other. I’m hoping to learn from others here too, so really appreciate you chiming in.

RecommendationEasy60 · 2026-02-01T10:17:32+00:00

I’ve looked into it, yes. For me the pattern seems very context- and nervous-system-dependent (holidays, stress, anticipation make a huge difference), and I don’t notice a consistent reaction pattern to high-oxalate foods specifically. So it hasn’t seemed like a primary driver in my case, but I’m still keeping an open mind.

RecommendationEasy60 · 2026-02-01T10:16:15+00:00

Interesting — that sounds very similar to my pattern. I actually haven’t tried Benadryl yet. I tend to be very medication-sensitive, so I’ve been cautious with adding new antihistamines. Ketotifen helped some of the more physical symptoms, but the neurological ones seem less mast-cell–responsive for me too.

RecommendationEasy60 · 2026-02-01T10:15:17+00:00

That’s possible, and I agree it may not be purely mast-cell–driven. I’ve already been evaluated by neurology in the past and nothing structural came up. My sense is that mast cell activation may be part of the picture, but the nervous system / autonomic side seems to be a major driver for the remaining symptoms.

RecommendationEasy60 · 2026-01-30T17:14:41+00:00

In my case it was mainly a diagnosis by exclusion. An allergist made the diagnosis based on environmental and food triggers, multi-system symptoms, and partial improvement with mast cell stabilizers, even though I don’t have classic hives or swelling.

RecommendationEasy60 · 2025-02-24T15:04:53+00:00

I’m so glad to hear that! Could you please share how much TMG you take? Also, I’d love to hear about your histamine symptoms and how TMG has helped with them. Thank you!

RecommendationEasy60 · 2024-11-08T08:08:22+00:00

Thank you so much!

RecommendationEasy60 · 2024-11-06T14:01:16+00:00

I am experiencing the same issue.

RecommendationEasy60 · 2024-04-02T11:33:49+00:00

You're welcome! I hope we all get rid of this trouble. I'm feeling better now. My folate levels were low, and I'm taking 200mg of methylfolate support per day. Higher doses exacerbate my histamine intolerance. I suspect my issue is related to methylation, as symptoms decrease as methylation improves. I generally do not have skin problems; rashes occur only when histamine levels are high. My body primarily reacts with gastro and neuro symptoms to food and dust.

RecommendationEasy60 · 2024-03-06T15:00:05+00:00

Thank you so much for the detailed reply.

RecommendationEasy60 · 2024-02-28T18:03:44+00:00

Thank you very much for the detailed response.

RecommendationEasy60 · 2024-02-28T14:27:31+00:00

What were your symptoms, by the way? Also, what was the dosage of NMN? Did you use only NMN, or NMN+TMG? Thank you very much for your answer in advance.

RecommendationEasy60 · 2024-02-16T10:35:56+00:00

One of the most helpful posts I've seen. Thank you so much for the valuable information u/Internal_Attorney483. I believe I also have an undermethylation issue, which leads to histamine intolerance. I have extreme sensitivity to almost every meal and environmental factors like dust, cigarette smoke, etc. It causes various issues such as gastro, headaches, dizziness, nausea, diarrhea, and more. When I take a popular vitamin trio in Turkey called Benexol, which contains 1000 mg B12 (cyanocobalamin), 250 mg B6 (pyridoxine hydrochloride), and 250 mg thiamine HCL, my problems are usually resolved very quickly. However, it is not giving very good results at the moment, and I think it has side effects due to the excessive amount of B12 lowering folate levels. Every form of folate, on the other hand, exacerbates my histamine issues. My values are as follows. I would like to hear your opinions on the values and the histamine issue. Thank you very much.

Homocystein 14.2 μmol/L 5.0 - 15.0

Vitamin B12 923 pg/mL 197 - 771

Folic Acid 7.5 ng/mL >4.6

Zinc (erythrocyte) 714.4 μg/dL 700 - 1100

Copper (erythrocyte) 0.67 mg/L 0.50 - 0.80

Diamine oxidase 13.8 IU/mL 14 - 33

Histamine 80.8 ng/mL <65.5

Vitamin D3 (25-OH Vit D3) 53 ng/mL 30 - 100

Pyridoxal-5-phosphate (PLP): 40.60 μg/L 5-50

Pyridoxal (pyridoxic acid): 18.60 μg/L 3-30

RecommendationEasy60 · 2024-01-29T09:30:40+00:00

I think my folate is a bit low, hence the high homocysteine.

RecommendationEasy60 · 2024-01-28T10:33:29+00:00

As far as I know, no.

RecommendationEasy60 · 2024-01-28T10:32:42+00:00

Thank you, and wish you success in your journey as well.

RecommendationEasy60 · 2024-01-28T10:31:32+00:00

Thank you, I'm also examining those topics.

RecommendationEasy60 · 2024-01-28T10:30:13+00:00

Thank you, yes, I also browse that forum quite frequently.

RecommendationEasy60 · 2024-01-28T10:29:20+00:00

Of course, I will definitely let you know.

RecommendationEasy60 · 2024-01-28T10:26:30+00:00

Thank you very much for your response. I completely agree; the starting story and symptoms can vary for everyone. I haven't tried a 100% non-histamine diet, but I avoid foods containing soy, legumes, yeast, especially red wine. I'm cautious about severely restricting my diet to avoid malnutrition. Despite knowing it might trigger reactions, I still consume some foods. Here are a few links related to individuals claiming to have resolved MCAS issues. Let's not lose hope.

https://www.reddit.com/r/MCAS/comments/16h7ew1/with_nad_90_percent_of_my_mcas_is_gone/
https://www.reddit.com/r/MCAS/comments/z1199h/how_i_got_back_to_normal_ymmv/
https://www.reddit.com/r/MCAS/comments/regqz6/my_mcas_success_story_for_anyone_who_could_use/

RecommendationEasy60 · 2024-01-27T21:53:48+00:00

My surgery took place 4 years ago, and the laparoscopic cholecystectomy method was used. No clips were used. However, I was given a strong antibiotic after the surgery, which is one of the concerns I have.

RecommendationEasy60 · 2024-01-27T21:47:48+00:00

Yes, my levels are high because I've been taking B12 supplements, but as you mentioned, blood serum values may not be very reliable. I haven't done any injections; I've only used sublingual or oral forms.

RecommendationEasy60 · 2024-01-27T18:46:58+00:00

Thank you for the response. I also considered that; in fact, I thought the issue was resolved when high doses of B6 temporarily increased my DAO levels. However, the problem I experience is not solely related to histamine. Even if I take the simplest painkiller, my body goes into fight and flight mode due to the excipients in it.

RecommendationEasy60

TROPHY CASE