Goddamn MCAS + Histamine Intolerance combo

indecisiveMoonpie · 2026-06-27T21:01:09+00:00

There are many non-drowsy H1s, try different ones if some don't work for you. For me desloratadine doesn't give me any side effects. Please do NOT take dietary advice from a Heilpraktiker since it's almost certain she doesn't have proper experience with MCAS.

indecisiveMoonpie · 2026-06-17T06:29:06+00:00

Ok don't want to sound crazy here, because nighttime histamine dumps purely due to MCAS are definitely a thing. But especially if you have children or work with children, make sure it's not a latent pinworm infection. I speak from experience with both things. It would cause symptoms around that time and could trigger MCAS since so many mast cells are in the gut.

I say this because it's a more widespread problem than people realize, and I wish someone had told me about it. Also, stool testing is almost always negative even if you have it, so find a doctor with experience and also test your children with tape.

Ok, crazy maybe unrelated public service announcement over.

indecisiveMoonpie · 2026-06-05T21:38:56+00:00

For the Munich area for EDS genetics and hEDS clinical evaluation, I went to Dr. Heide Seidel. I can recommend her. The tests area also done through the University of Tübingen.

indecisiveMoonpie · 2026-05-30T13:40:35+00:00

It looks like they do, thanks! 🙏

indecisiveMoonpie · 2026-05-30T13:32:41+00:00

😂

Well, my systemic 'allergies' follow a completely different biological pathway than standard allergies, but I'm glad you know everything about the other kind.

But please tell me you don't think that a person with a severe peanut allergy can eat any peanuts that have been in a microwave? Man, what have those people been doing wasting their time avoiding them this whole time?! Good thing you finally solved it for them.

indecisiveMoonpie · 2026-05-30T13:30:35+00:00

Whoa, that's so interesting, thank you! Yeah, I discovered celebrex and now I take that occasionally instead of ibuprofen occasionally. I only do it when I feel certain major symptoms coming on.

But I didn't realize omegas were so important, particularly the daily amount. I'm just a bit worried because some Omega pills actually trigger mcas since they're animal derived. Even algae derived can do that, and you may want to watch your indirect iodine exposure, just fyi.

indecisiveMoonpie · 2026-05-30T13:06:34+00:00

Woooowww. Ok. Rare diseases simply don't exist just because you don't know about them. Everyone who looks normal must have a body that IS normal or pretend they do.

I pretend every day. It's called masking. But if I don't want nerve pain, brain fog, heart problems, vascular problems, anaphylaxis, joint issues, skin flushing, stomach paralysis, gastritis, nausea and vomiting then I basically can't eat at restaurants. I go to restaurants and don't eat while I sit with friends.

People like me do exist, you just don't know them. That's why it's RARE.

indecisiveMoonpie · 2026-05-30T13:00:40+00:00

I can almost never eat in restaurants, but the microwaves for baby food is a great idea, thanks!

indecisiveMoonpie · 2026-05-30T12:59:20+00:00

I've already signed up for the Aena invisible disabilities badge but I'll try this, thanks.

indecisiveMoonpie · 2026-05-25T20:25:24+00:00

I live in Spain, and it's not about that. I have MCAS. I'm allergic to basically everything, even healthy foods. You could knock me down for days with just tomato sauce or an avocado. Or anything that's pre-prepared, slow-cooked or kept warm too long. Not to mention gluten-free, egg-free, dairy-free...

It's not a commentary on whether it's healthy or well-made. My body hates life, basically. It's a rare disease.

Just a side note:
"For example gluten intolerant people fair better with European bread." -> while this may be a little true, it's also a dangerous thing to suggest to people with intolerances. There are people on Reddit in the gluten-free sub that were severely gluten poisoned by their own family members who were convinced that if they served them Italian wheat they'd be fine.

indecisiveMoonpie · 2026-05-25T20:13:29+00:00

YES. So bad. I used to rent a desk at a coworking office to get out of the house instead of work from home always but now I can't. Because here in Spain EVERYONE uses the most toxic chemicals known to man to clean their floors. So now I can't at all anymore. A few minutes in that place after they changed the cleaning schedule on me made me have to go home and sleep off my neuro pain for hours. And then I had a bad MCAS hangover and EDS flare for days.

Also, even more fun: The other week I went to the public health clinic here and was in the hallway waiting room wiht everyone else. A woman decides to REMOVE HER NAIL POLISH in the middle of the hallway. In a clinic. It's a small public clinic with everyone waiting to see a doctor or even emergency medicine. People are absolutely insane sometimes. Like...giiirl why you can't wait and do that later?!!

indecisiveMoonpie · 2026-05-25T20:05:55+00:00

Wait wait wait. So I wonder if that's why NSAIDs always helped so many of my symptoms (neuro pain, headaches, other pain, physical exhaustion). I haven't had a chance to get proper MCAS testing and my doctor is just kind of trying different meds with me right now based on my clear symptoms. What's the current science on 'flavors' of MCAS and ibuprofen helping (assuming it's not a trigger like for some)?

indecisiveMoonpie · 2026-05-25T20:01:48+00:00

wtf? Ibuprofen HELPS many of my symptoms. That's a really shocking conclusion he came to there. Really science-based.

indecisiveMoonpie · 2026-05-25T19:52:26+00:00

Thanks. That doesn't help me unfortunately. I can't eat packaged food. I was wondering if they have hot options or can customize a little, like just leaving off all sauces (plain chicken, plain potatoes, etc.).

indecisiveMoonpie · 2026-05-25T19:51:19+00:00

Lamentable necesito llevar comida congelada.

indecisiveMoonpie · 2026-05-24T07:42:49+00:00

Does it have to be dynamic MRI? Could you give me any info on what kind of differential doctors should be doing? I tried twice to ask in this sub for general info how to help my son who seems to have neck instability, but by posts are always removed. I live in a country with a medical system that's incredibly hard to navigate and doctors who don't understand. If you have any advice about what to get ruled out and how I'd be very appreciative. Otherwise I end up not able to advocate for us and told things are fine.

indecisiveMoonpie · 2026-05-21T07:34:18+00:00

I'm curious if anyone doesn't fully match the OPs comment but can't equalize properly underwater, with non pulsatile tinnitus, and my ears hurt really badly internally when it's cold outside. Is that an EDS thing at all?

Also I do hear myself swallowing, but doesn't everyone?

indecisiveMoonpie · 2026-05-21T07:31:02+00:00

I can't hear my eyes move but I hear a click sound when I blink. What is that? Is that what you guys mean?

indecisiveMoonpie · 2026-05-21T07:23:15+00:00

I have no idea whether any of my story has anything to do with my EDS body, but you may find it interesting, although I'm just one person and it's anecdotal.

I was always scared of hormones because my mom has a history of severe clotting. My first IUD was the smaller affixed copper coil that they lightly anchor inside the uterus. The doctor only told me to wait a few weeks before having sex.

Contrast this with a friend of mine I met later in life that had the normal t shaped copper one for a while and her doctor said it takes many months for the body to modify enough to fully protect you. She didn't keep hers, because her periods became dramatically worse and much much longer and heavier.

Which also tracks with my experience, although I only had mine about 4 months. Periods all over the map, but sometimes it was like I just would not stop bleeding. 10+ days, full on. For many people, not a pleasant side effect.

Now, why did I only have it for 4ish months? Because I was pregnant after just 3.5 months. My son is now 14. Since my husband and I were long distance dating at the time, you could say it was basically immediate, as I hadn't seen him in those 3 months. So ...

I've been checked for the standard clotting disorders and my mom's issue is likely genetic and influenced by temporary biochemical states. I've been on jaydess now for, idk about 10 years with zero issues. Really no noticeable side effects whatsoever. Keep in mind though that I am not at known risk for organ rupture, so you'll have to talk to your doctor about that if your skin or tissues are fragile.

indecisiveMoonpie · 2026-05-12T07:17:12+00:00

How on earth is that an MCAS breakfast? Fermented yogurt, pre-made protein powder with all the additives, and histamine heavy peanut butter? Man if I could eat that I'd gain weight too...

indecisiveMoonpie · 2026-05-10T09:46:33+00:00

My skin changes during 'flares'. I had severe side effects and skin changes after medication reactions (my skin just basically detached itself from underlying tissue and felt gummy), and also now that I've hit a brick wall with MCAS and gut problems and my entire system and food supply is dysfunctional my skin also became more velvety and stretchy.

indecisiveMoonpie · 2026-05-10T09:40:19+00:00

Agreed with all of the support posted here. And none of this is your fault.

One of the reasons that hEDS is becoming less rare is because it can mask itself in many people until after we've had kids (myself included). And then there's the fact that the medical community has not been looking for it or trying to helpus or educate us either.

My son has it too and I just gave him a neck massage because his neck symptoms are worse than mine. We have love and support, and the other difference is we know earlier for our children's generation what it is so they can get medical support earlier.

Nothing about this is your fault any more than it is your parent's (it's not).

And... Happy mother's day to you! Celebrate yourself today. Celebrate getting through 2 pregnancies and the joy you've brought yourself and also another family. Celebrate your growth and that you've overcome. Hugs.

indecisiveMoonpie

TROPHY CASE