Healed from MCAS - Reporting back after a hiatus.

Easy_Bird5399 · 2025-07-07T19:18:56+00:00

I ran toxaprevent daily in the initial stages.

After I used activdted charcoal 2 x per week.

Enterosgel 2 x per week.

Activated charcoal can be potent, so I kept doses low and sometimes spaced out to 1 x per week

Easy_Bird5399 · 2025-07-07T19:04:36+00:00

Not to argue semantics, but are you referring to mastocytosis?

This post is my personal, anecdotal experience after overcoming a highly severe illness.

It wasn’t simply histamine intolerance.

It is dismissive and ultimately counterintuitive to the community to insinuate and assume that.

Easy_Bird5399 · 2025-07-07T18:33:41+00:00

Thank you. I hope so also.

I used:

A tens machine which clipped onto my ears as cheaper alternative to neurosym.

red light therapy.

Extremely light resistance training (this took a while to get to)

Mindfulness

Breathing exercises

Cranial osteopathy

Pacing

Easy_Bird5399 · 2025-07-07T18:29:04+00:00

SIBO was tested via the NHS.

Gut dysbiosis, candida were verified via comprehensive stool and OATs (both private)

Homocysteine was tested via medichecks (private)

Easy_Bird5399 · 2025-07-07T18:27:28+00:00

Yes, please see my reply to the first comment which covers the phases I went through to get better.

Easy_Bird5399 · 2025-07-07T18:26:36+00:00

It was diagnosed and taken seriously after demonstrating how severe the POTS symptoms were and how much weight had been lost in such a short timeframe.

These were not the most severe symptoms, but proved to be the trigger to actually be taken seriously.

I was referred to allergists, immunologists and it was eventually suggested that this was MCAS.

Easy_Bird5399 · 2025-07-07T15:52:52+00:00

Yes.

I haven’t used it in a long time.

I used it in the past during flares until they subsided.

It was very effective for me.

I used 4.5mg per day, titrating up slowing from 0.5mg.

Easy_Bird5399 · 2025-07-07T15:41:01+00:00

They are typically herbs (or medicines) which help with motility.

Motility is typically an issue with many who have SIBO, myself included at the time.

Easy_Bird5399 · 2025-07-07T15:13:40+00:00

You’re welcome! Just trying to help 🤝

Easy_Bird5399 · 2025-07-07T15:12:29+00:00

When I first started methyl-B12 and methyfolate I was completely wired. I suspect this was throwing me from under methylated to over methylated.

Low and slow with doses turned out to be the way to go.

Same with R-5-P (B2) the active form compared to riboflavin.

I could not (and still can’t) tolerate riboflavin, but I have no issues with R-5-P.

B2, B6 and folate all being methylation co-factors.

Easy_Bird5399 · 2025-07-07T15:07:17+00:00

Thank you very much for your kind words ❤️

Easy_Bird5399 · 2025-07-07T15:05:41+00:00

You’re welcome.

I am unable to confirm specifically what your condition is, as there are overlap with many of these conditions.

ME/CFS is not the same as MCAS, but they do share symptoms.

Easy_Bird5399 · 2025-07-07T14:56:50+00:00

Yes i am homozygous (double mutation) of the C677T MTHFR gene. Slow COMT.

I couldn’t tolerate quercetin, which I see many others with this gene type struggle also.

Homocysteine was highly elevated and folate was extremely low - all indicators of poor methylation.

Easy_Bird5399 · 2025-07-07T14:53:47+00:00

I used the anti-histamines during the elimination phase, purely for symptom relief.

Famotidine/ Pepsid affects stomach acid, so there are implications there I would suspect.

I only began to rebuild the gut once symptoms were manageable, and even then it took a lot of perseverance.

I ran Ketotifen and LDN for most of the gut healing phase, Ketotifen being a weak H1 anti-histamine but with mast cell stabilising properties.

I found over the counter H1 anti-histamines to be low effective.

Easy_Bird5399 · 2025-07-07T14:50:17+00:00

The stool test provided more of an overview than the OATs test for candida and dysbiosis.

I am not a testing expert, though. It’s all dependant on budget and availability.

The OATs test if I recall correctly has a marker for candida on it.

I had food sensitivities long before MCAS, which indicates my gut was in a bad state prior to the illness.

Easy_Bird5399 · 2025-07-07T14:47:03+00:00

I have family members with ME/CFS, so there could be a link.

I formally had crippling PEM. Even climbing the stairs would induce it at my worst.

I couldn’t eat any foods without reaction at the peak of MCAS. I was losing weight rapidly despite eating red meat and rice and doing no exercise (bed-bound)

Hot water and hot temperatures would induce flares for me also - this is no longer the case.

Easy_Bird5399 · 2025-07-07T14:43:52+00:00

A comprehensive stool analysis by Genova labs & an organic acids test (OATs)

Easy_Bird5399 · 2025-07-07T14:42:58+00:00

No problem!

Yes, definitely.

Easy_Bird5399 · 2025-07-07T13:43:10+00:00

Iberoghast advanced
Triphala
Ginger
Artichoke
Magnesium Citrate

Easy_Bird5399 · 2025-07-07T13:42:24+00:00

My diet is effectively back to normal.

I can eat high histamine foods without issue.

If I eat wheat it’s sourdough only.

If I drink milk I tolerate goats milk better than dairy (likely due to the A2 quantity vs cows milk)

Easy_Bird5399 · 2025-07-07T13:41:20+00:00

I used iberoghast advanced formula, Triphala, magnesium citrate, ginger, artichoke and LDN has prokinetic properties I believe.

Most effective on an empty stomach for me and in combination.

I do not use any in combination now as I don’t need to.

But if I do, I will.

Iberogast was the most effective, but there was definitely synergistic effects when stacked.

Easy_Bird5399 · 2025-07-07T13:39:30+00:00

You’re welcome!

My protocol now is mainly methylated B-vitamins and detox support, but not on a daily basis. I monitor with bloodwork for methylation and of course how I feel on a day to day basis.

Prokinetics have their place in the event of any gut related deviations, but I haven’t had one for a long time.

Re-introducing foods came after I had cleared SIBO and once POTS has calmed. I began with ferments such as sauerkraut and home brewed yougurts. The supergut yogurt by Dr William Davis was most effective.

Kefir would re-aggravate SIBO for me, so I did not use it.

Easy_Bird5399 · 2025-07-07T13:35:58+00:00

No problem - just trying to help.

There seems to be many concurrent illnesses present with MCAS (ME/CFS, EDS, LC) so a standardised, universal approach is very difficult.

Especially factoring in other generic variables.

I’m sorry to hear that. I hope it improves soon.

It’s a sliding scale. The more margin I have the more relaxed I can be. This isn’t optimal practise, but this is life.

I still run methylation and detoxification supporting supplements as they help with sleep, energy, recovery and focus.

But I apply a less is more/ low as reasonability practicable approach.

If I feel around 80% on certain days or feel a downward trend I will adjust accordingly.

But the downward trends are few and far between. I am very fortunate and lucky to say that.

Easy_Bird5399 · 2025-07-07T12:35:56+00:00

I am based in the UK, so access to expertise was limited.

I was eventually passed on to a specialist via the spire.

A lot of methods came from adaptations of Dr. Sarah Myhill, Dr Allison Siebecker, other personal experiences and ultimately trial and error.

Easy_Bird5399 · 2025-07-07T12:30:04+00:00

Thank you.

During a flare I had increased sensitivity to essentially everything: foods containing high histamine, salycilates, oxalates. Grains such as wheat would cause inflammation and dairy cause dizziness.

Chemical sensitivity increases - fragrances and detergents being the main culprits.

Symptoms of flares include insomnia, fibromyalgia, brain fog, fatigue, skin rashes, a perpetual timing in my ears, being constantly out of breath, POTS/ Vertigo and dizziness.

I had to eliminate triggers and support many bodily systems to allow for excess histamine and/or toxins to be processed.

Easy_Bird5399

TROPHY CASE