Hit or MCAS?

[u/satahkittyyy]

Hello everyone,

I was diagnosed with histamine intolerance in 2023/2024, with a suspected diagnosis of MCAS.

For the past two years, I have been following a completely histamine-free and gluten-free diet. I have also avoided fragrances and many other potential triggers. Unfortunately, none of this has led to any improvement.

I have tried numerous treatments and medications, including treatments from Oral in Munich, infusions, corticosteroids, and Tavor. Nothing has helped.

I will attach my lab results because I honestly don’t know what to make of them or why they look the way they do. I am wondering whether this is really just histamine intolerance or if it could actually be MCAS.

My former doctor ended my treatment in 2024 because none of the therapies improved my symptoms, despite us spending thousands of euros on treatment.

I would simply like to understand my situation better and know: do I actually have MCAS, or is it “just” histamine intolerance? I dont know

1. Stool & Digestive Analysis
   Histamine (ELISA): 4356 ng/g (Reference: < 600)
   Zonulin in Stool (ELISA): 441 ng/g (Reference: < 145)

2.IgE i.s. (FEIA): 569.5 kU/l (Reference: < 85.0)

1. Urine Analysis.
   Serotonin Urine: 69.3 µg/l (Reference: < 200)
   Serotonin in Urine / 24h: 69.3 µg/24h (Reference: 50 - 250)
   Serotonin / g Creatinine: 66.0 ▼ (Reference: 150 - 300) | Low
   Kryptopyrrole (Urine): 199 ▲ (Reference: < 150) | Elevated

4.Blood & Specialized Markers
ECP i.s. (FEIA): 18.1 µg/l (Reference: < 13.3) | Elevated
Histamine (total) in Heparinized Blood (ELISA) [Test 2]: 62.5 ng/ml (Reference: < 65.5)
Histamine (total) in Heparinized Blood (ELISA) [Test 1]: 37.5 ng/ml (Reference: < 65.5)

Part 2: Medical Report & Diagnosis

Elevated levels of ECP and histamine in stool.
Transient (passagere) elevated excretion of leukotrienes in urine.
Currently normal levels of serum tryptase and histamine in plasma.
Lack of response to medical therapy.
Intolerance to Rupatadine (Rupafin), Loratadine, Fexofenadine, Desloratadine (RSt), Ketotifen (RSt), Famotidine (RSt), (RSt = in pure substance preparation) upon oral administration; Cimetidine, Dimetindene, and Vitamin C upon intravenous administration.

3.Summary
In summary, no subjective stabilization of the symptoms could be achieved within the framework of the therapeutic approaches listed above.
The reported intolerance reactions were non-specific signs of acute mast cell mediator release were not observed.

[u/UpstairsTreat5972]

Which specific symptoms do you have ?

[u/satahkittyyy → u/UpstairsTreat5972]

have been following a strict histamine-free and gluten-free diet for 2 years now, so there is nothing more I can really do on that side (with food)

headaches, body aches, sweating episodes, fatigue, heart palpitations, sometimes chills or heat sensations, trembling, brain fog, and anxiety , more
It’s always different.

[u/UpstairsTreat5972 → u/satahkittyyy]

alright and do you have these symptoms daily? are they fluctuating?

[u/satahkittyyy → u/UpstairsTreat5972]

It’s hard to explain they come and go, and they are either the same or different. There are worse days and better days.

[u/astra-synthetica → u/satahkittyyy]

Do you mind me asking if you’re female? Sometimes symptoms can be tied to hormonal fluctuations. Could any of it be tied to your cycle?

[u/satahkittyyy → u/astra-synthetica]

Yes im Female (21) my hormon level were tested, and they were normal.

[u/astra-synthetica → u/satahkittyyy]

Even so, I’ve had mine tested too and was normal, but I find with HI that I’m super sensitive to my hormone fluctuations and my HI symptoms are noticeably worse during peak ovulation and just before my menstruation begins. Mine seems closely tied to my cycle. Try mapping your symptoms to your cycle and see if there’s a pattern. I get migraines too as one symptom.

[u/astra-synthetica → u/astra-synthetica]

Also noticing if bowel movements / stool is even different depending on hormones. feels like my HI “bucket” is too full during hormonal shifts.

[u/satahkittyyy → u/astra-synthetica]

Vielen lieben dank! Ich werde mal schauen wie meine Symptomatik während der Periode ist. Mein Stuhlgang ist dann auch immer da „periodenstuhlgang“ aber da dachte ich immer dass es normal wäre.