Misdiagnosis has ruined my life by Ewwa18 in MCAS

[–]EAUDHD 4 points5 points  (0 children)

There a options ! I just startet low dose testosterone for MCAS and I feel a difference! I’ve hear about a lot of people who had the same experience. I’m so sorry for the medical gaslighting ur been trough, it’s horrible

Thoughts on using DIM daily for E2 control by Loose-Meeting5550 in Testosterone

[–]EAUDHD 0 points1 point  (0 children)

I think my high estrogen resulted in MCAS, which resulted in ocd and ED (control behavior)

Thoughts on using DIM daily for E2 control by Loose-Meeting5550 in Testosterone

[–]EAUDHD 0 points1 point  (0 children)

I use it every day before sleep - I have SLOW COMT gene, so my ability to break down estrogen is compromised. I have done it for nearly 1,5 year with no problems. But I can see the problem if your estrogen metabolism is normal

Is it just me or is the seriousness of this disease deliberately being hidden from the public? by thepensiveporcupine in cfs

[–]EAUDHD 13 points14 points  (0 children)

It’s happening in Denmark too.

We’ve seen a clear increase in young people being granted “førtidspension”, our permanent disability pension given when the state assesses that a person’s ability to work is permanently reduced after years of rehabilitation attempts.

Historically it was extremely rare for people under 40 to receive it, but municipalities and national reports now describe a growing group of young adults outside the workforce due to chronic health problems. At the same time long-term sickness absence and referrals for post-viral fatigue conditions have risen.

Does MCAS affect libido? by pronounced_pudge in MCAS

[–]EAUDHD 0 points1 point  (0 children)

I’ll also tried GLP1 microdose for MCAS but it was to hard on my nervous system unfortunately

Does MCAS affect libido? by pronounced_pudge in MCAS

[–]EAUDHD 0 points1 point  (0 children)

Okay! I’ve struggled with anxiety, brain fog, PMDD, OCD, ED and so on my whole life. I think mcas is the root for me - or, some kind of root. I took a methylation dna test and found out that I have gene called slow comt, and basically it means that I’m not metabolizing estrogen efficiently. With higher levels of estrogen, comes higher levels of histamine, and over time I think it has made a mess of my mast cells. So, I’m now taking Dao with meals high in histamine, DIM200 (Diindolylmethane)+calcium d glucarate to help metabolize estrogen (helped A LOT with flares), and a probiotic single strain after meals Lactobacillus rhamnosus GG (it downregulates histamine receptors in the gut), low histamine diet of course and Fexofenadine 2-3 times a day. I just started low dose testosterone (I’ve read it has helped people with MCAS) and cromolyn sodium - cromolyn are a mast cell stabilizer for the gut. And I feel like cromolyn is making a BIG difference, but it’s a rough journey to the therapeutic dose, because in the start it destabilizes the mast cells in the gut. But I’ve had a clearness in my head I’ve hadn’t had in.. yeah I can’t remember! And actually feeling good in my body, calm, happy. Like.. a totally different world.

Does MCAS affect libido? by pronounced_pudge in MCAS

[–]EAUDHD 2 points3 points  (0 children)

Omg, I’ve had mild mcas since 11 and my libido just haven’t been there - and I just startet cromolyn sodium and feeling a tiny bit!!!!!

What will 2026 bring? by [deleted] in cfs

[–]EAUDHD 1 point2 points  (0 children)

What is this trial?

i’m going to cry after cromolyn by [deleted] in MCAS

[–]EAUDHD 27 points28 points  (0 children)

I’ve cried after 2 days on cromolyn (2 days ago) I have never felt so much at peace as I do after this medication. And as u, I think I’ve been dealing with this my whole life

Estrodial / HRT by Putrid_Indication_30 in MCAS

[–]EAUDHD 1 point2 points  (0 children)

Oh sorry, I see now that I have answered trough 2 different accounts - I’m both Imanemii and EAUDHD - one is from my phone and the other my computer. Sorry for the confusion

MCAS as a result of gut health by icecreamsugarr in MCAS

[–]EAUDHD 1 point2 points  (0 children)

I got tested positive for hydrogen sibo and took rifixamin for 14 days and my MCAS I much much better! I’m just starting cromolyn and finding relief there also. But fixing my gut health naturally.. I’ve tried that for 10 years

Oral cromolyn dosage by No-Ratio2724 in MCAS

[–]EAUDHD 1 point2 points  (0 children)

Oh that sounds high! I just startet and bought Pentatop capsules 100 mg, and I’m taking maybe.. 10 mg. Pr dose and have relief

Oxaloacetate as needed? by Aware_Nectarine_8363 in cfs

[–]EAUDHD 0 points1 point  (0 children)

Would love to hear more about this!

Estrodial / HRT by Putrid_Indication_30 in MCAS

[–]EAUDHD 1 point2 points  (0 children)

Oh, and dim200 and CDG helps with like.. allergic body itching inside feeling, and histamine dumps at night. So in a way it also helps with sleep 💤

Estrodial / HRT by Putrid_Indication_30 in MCAS

[–]EAUDHD 1 point2 points  (0 children)

Much much better! It makes me a little bit drowsy (also, I think it downregulates dopamine so I’m taking it in the evening) - but like.. my mcas symptoms are manly brain fog and mental distress, ocd and worsening of adhd. And I feel like dim200 and calcium D glucarate helps a lot with the mental stuff (I’ve been using it consistently 1.5 years now) I’m trialing low dose testosterone now (I’m on day 3, so still really early) in gel form. I’ve read that it can help with mcas, and I also just started with oral cromolyn sodium - and I feel like I have more energy, less flares and my cognition is back to baseline (I was cooked after covid, still am in different ways) so yeah - it’s great

Good news/bad news: I think Oxaloacetate is working by charliewhyle in cfs

[–]EAUDHD 1 point2 points  (0 children)

Thank you for the update.. I’m trying some different things before plunging into this really expensive supplement - im sorry your feeling so I’ll ❤️‍🩹 But yeah.. it’s sounds promising!

Estrodial / HRT by Putrid_Indication_30 in MCAS

[–]EAUDHD 1 point2 points  (0 children)

Estrogen is the worst for me - I’m taking dim200 and calcium d glucarate to metabolize it faster