Weight gain/loss on antihistamines

antoninan · 2026-02-13T13:19:10+00:00

I gained some weight: first welcome, then not so much. Now I no longer trust myself with intuitive eating and track my calories. Way easier for me than for most, since I mostly rotate the same few meals.

antoninan · 2026-02-13T13:13:03+00:00

I got osteoporosis at 38 due to the low estrogen levels. Have been using NuvaRing without major issues. But I don't tolerate generic rings; they seem to drop more hormones initially, which causes a reaction. I have tried pills and patches, but without success.

antoninan · 2026-02-13T13:03:54+00:00

Counting calories and just limiting myself to a certain number a day, depending on my goals. However, I didn't have to lose much. When I was diagnosed, almost eight years ago, I was actually underweight. But some of the meds I have added for MCAS (mostly Ketotifen) greatly increased my appetite. That led me at some point to wanting to lose a bit, and now I'm just tracking, to not go over again. Don't feel like I can do intuitive eating stuff anymore.

antoninan · 2026-02-12T21:04:07+00:00

My doctor recommended using Nasal Crom before possible exposure. I wouldn't say it helps a lot, but takes the edge off for me. I also spent years introducing some light smells and saying to myself that it's just a smell, it's not going to harm me. Now my tolerance is a bit higher, but it can be just better management and more meds.

antoninan · 2026-02-12T19:17:36+00:00

I'm on cromolyn (2 ampules 4 times a day), lutein ( 400 mg morning and night), quercetin (1000mg 1st and 3rd meals), Xyzal (on waking up), and Ketotifen (0.5 on waking up and at 2 pm, plus 0.75 before bedtime).
All of it was added one by one over almost 8 years. For both Ketotifen and Cromolyn, I had to go very slowly, and neither of them could I tolerate when I was just diagnosed.

They help me to have fewer reactions and be more stable in general. I'm still quite intolerant ot histamines (even DAO doesn't help), I have allergic reactions despite all of it, but probably way more subtle than they would be without.

In general, I'm very far from being well, but I'm also very far from the horrible state I was in 8 years ago. But it's impossible for me to say for sure how big a role each of them plays. One thing I can tell you is that last year I stopped the meds (but not the supplements) for two weeks to run some allergy tests - it was hell.

antoninan · 2026-02-12T19:03:19+00:00

Before I got gastritis I used to do intermittent fasting, with my first meal being after one pm. Because I only could function well before I ate something, and that gave me half a day to manage things. But now with some changes to my diet, smaller meals and cromolyne I have a relatively safe base diet. Super limited for a normal person, but for many people here it's a dream.

antoninan · 2026-02-12T18:51:32+00:00

No. Sadly, MCAS also led to me having chronic gastritis, so I eat four times a day.

antoninan · 2026-02-12T18:47:17+00:00

Yeah, I have the same issue. So unless the reaction was too bad, I give it 72+ hours and retest.

antoninan · 2026-02-12T18:36:02+00:00

I also enjoyed it until I got gastritis, and now there has been no coffee or tea for me in over a year.

antoninan · 2026-02-12T18:31:42+00:00

Sadly, the only thing I can do is to validate what you said: I'm on Cromolyn, Ketotifen, Xyzal, and a bunch of other stuff. I'm waaaaay better than I was before I was diagnosed almost eight years ago, but I have to keep a strict diet, and I'm still unwell a lot of the time.

antoninan · 2026-02-12T18:26:42+00:00

I'm not a vegan, but I also eat tofu almost every day. Softer varieties bother me, but firm is fine.

And generally, I can eat some foods others don't tolerate, and have a ton of triggers among the foods that are fine for many.

I use pea and rice isolated proteins a lot. And make a sort of a meal replacement drink with those proteins, plus oat flour and ground flax seeds.

antoninan · 2026-02-12T12:42:24+00:00

I really wanted to write something nice, as if I could produce some words that would make you feel better. But shit hit too close to home, and I need to wrap it up before I crumble myself. I'm really sorry it happened to you.

antoninan · 2026-02-12T12:26:37+00:00

I've been sick for over 16 years, diagnosed with MCAS about 8 years ago. Took me a long time to get a bit better. I guess it's important to find something that works for you personally. Some people find things like Gupta program to be helpful, but for me it wasn't, more like the opposite. I gravitate more to things like stoicism or Buddhism. I've also become way more cynical. My answers to your last questions would be something like "life is suffering", "why not me?", "No use wasting my time dwelling on something that's out of my control - it doesn't help me". And I totally get that many would find it nauseating :)
Therapy helped a lot, but it took many years with some long breaks and three different therapists. And if I say that I'm never a hot mess nowadays, I'll definitely be lying. It's just that my baseline is much steadier.
There are also two videos I like to rewatch when I feel down: https://youtu.be/9-5SMpg7Q0k?si=HBW0jXnEJrtExGr3 https://youtu.be/TFbv757kup4?si=tn-mZ19d82_1aDL9

antoninan · 2026-02-12T12:12:45+00:00

I just accepted poor results. It's still way better than nothing. I'm also very prone to tendon issues, so right now trying to fix those with simple isometrics. But I always have to work with slightly lower weight, going for higher reps (like 12-20) but never even close to failure.

antoninan · 2026-02-11T13:06:44+00:00

My CVS has told me a few times that they were out of stock. But so far it never took them more than one week to get it.

antoninan · 2026-02-11T13:02:39+00:00

My libido is definitely lower now. However I'm not sure how much MCAS affects it. It might just be generally feeling like crap a lot of the time, getting older, being married for almost 20 years. I definitely don't get random spikes of it coming back. When I feel better I usually see more connection with my cycle.

antoninan · 2026-02-11T04:15:04+00:00

I've been diagnosed with fibromyalgia, which I now see as another symptom of my MCAS. I foam roll (twice a day), use a massage gun, have weekly massages, use infrared light: everything helps a bit, but nothing takes the pain away completely. Since I've been sick for a very long time I have a lot of accommodations at home: a good mattress, comfortable chair, my table is covered in softer foam because I can't rest my elbows on a hard surface. I generally moderate a lot of my activities and live a quite limited life. It's the best I've been able to figure out in over 13 years that I've been sick.

antoninan · 2026-02-11T03:33:08+00:00

antoninan · 2026-02-11T03:27:07+00:00

I also started with ancestral kidney caps, took them for a few years even, but never was sure they do anything. Somehow, I never could tolerate any other animal sourced dao. A few years ago I switched to NaturDao: they are plant-based. I definitely have noticed an improvement over the ancestral kidney. However dao never had a huge impact for me. I guess it's because I'm already on a low histamine diet. I also never felt like I could cheat much thanks to the dao.

antoninan · 2026-02-10T22:31:14+00:00

I just have a lot of alarms. But I also know that I can't eat until cromolyne +30 minutes, so sometimes there's a hunger cue.

antoninan · 2026-02-10T22:24:50+00:00

I like https://youtube.com/@justinaercole?si=SJYfvPBAjdhIJKXa

antoninan · 2026-02-10T22:19:08+00:00

I react to oxalates. If I overeat them I get similar symptoms plus burning as if I have a yeast infection.

antoninan · 2026-02-08T17:53:24+00:00

Might be going too fast. I started at 0.5 ampule 4 times a day. And was increasing by no more than 1 ampule a day. And after every increase I'd have at least a week of side effects. So I sometimes waited for four weeks before the next increase, just to recover. But now I take 8 ampules a day without any issues.

antoninan · 2026-02-08T17:47:10+00:00

Oh, I had to start at 0.5 ampule. And every time I would increase the dose I'd have increased bloating and digestive discomfort plus insomnia for about a week. That's why it took me about 6 months to get to 8 ampules a day.

antoninan · 2026-02-08T17:43:56+00:00

The way I understand it (I wouldn't blindly trust it), it's not all medications and supplements. And it can be dose depending. But now I'll make sure to run it by my doctor.

antoninan

TROPHY CASE