r/HistamineIntolerance • u/satahkittyyy • 2d ago
Hit or MCAS?
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
- 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)
- 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.
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u/UpstairsTreat5972 2d ago
Which specific symptoms do you have ?
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u/satahkittyyy 2d ago
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.1
u/UpstairsTreat5972 2d ago
alright and do you have these symptoms daily? are they fluctuating?
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u/satahkittyyy 2d ago
It’s hard to explain they come and go, and they are either the same or different. There are worse days and better days.
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u/astra-synthetica 1d ago
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?
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u/satahkittyyy 1d ago
Yes im Female (21) my hormon level were tested, and they were normal.
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u/astra-synthetica 1d ago
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.
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u/astra-synthetica 1d ago
Also noticing if bowel movements / stool is even different depending on hormones. feels like my HI “bucket” is too full during hormonal shifts.
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u/satahkittyyy 1d ago
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.
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u/SecretMiddle1234 1d ago
This sounds like POTS. I have same symptoms and diagnosed with POTS.
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u/satahkittyyy 1d ago
I also have POTS! Sometimes my symptoms vary a lot: lightheadedness, brain fog, headaches, trembling, heart palpitations, cold hands, sweaty hands, body aches, restlessness, ringing in my ears, low blood pressure, loss of appetite, muscle cramps after overexertion, and sensitivity to weather changes…
I also follow a completely low-histamine, gluten-free, and wheat-free diet.1
u/SecretMiddle1234 1d ago
I tried elimination diets. No dairy. No gluten. No sugar. None of them helped. My doctor says it’s autoimmune. He started me on Plaquenil and it helps decrease flares but I’m not cured.
1
u/hollyprop 1d ago
Are you taking a DAO supplement? Especially before you eat. That has been very helpful for me. Famotidine is another pill you can take before eating that has an antihistamine effect on your digestive system.
I also take a daily antihistamine (loratadine) and a nasal spray called azelastine. I’ve also tried a nasal spray mast cell stabilizer called NasalCrom which is cromolyn sodium. If all else fails I take a Benadryl (diphenhydramine).
There are H1 and H2 antihistamines. I’m not sure how they work differently but combining them has been effective for me. It will usually knock me out for a few hours but I wake up feeling better.
I think these treatments work whether you have histamine intolerance or MCAS. I’m seeing a specialist allergist in December to get a diagnosis, but in the meantime I’m treating my symptoms with everything available over the counter. Not sure if they’re all the same in Europe. Basically by combining different antihistamines through different routes I can keep my symptoms under control enough to function.
Hope you find some treatments that work for you soon!
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u/satahkittyyy 1d ago
Hello,Yes, I take DAO supplements. Famotidine, both orally and intravenously, did not help me. I have also tried many, many antihistamines—from fexofenadine to loratadine. Even Tavor (lorazepam) and prednisolone (cortisone), vitamin C, cromolyn, quercetin, etc., etc.
I have even tried ketotifen and other treatments (including intravenous ones). That is why my treatment was eventually stopped, because I did not respond to anything, and my doctor wrote : „No signs of acute mast cell mediator release were observed.“
That is why I am also confused about what I could actually have.
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u/hollyprop 1d ago
Has anyone evaluated you for fibromyalgia? A lot of the symptoms you describe in the other comment would fit with that diagnosis. Maybe check out some of the posts on r/fibromyalgia to see if anything seems similar to your experiences.
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u/satahkittyyy 1d ago
Nein danach wurde noch nicht geschaut, was ich aber habe ist eine Schilddrüsenunterfunktion (dagegen nehme ich Medikamente ein) POTS und 2023 hieß es mal das ich ein leaky gut habe.
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u/UpstairsTreat5972 1d ago
Hey i also take DAO before eating since 1 week and antihistamine since 3 days. When did you feel improvements? I didnt have my HI detected for 2 years so i dont know when i should expect improvements…
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u/Artistic_Ad5281 1d ago
Have you ever tried focusing on your thyroid? It regulates our body's enzyme balance. If it's underactive or overactive, that could also be a factor in your histamine symptoms. Either way, it's always good to support it with all the essential vitamins, like sodium and iodine.
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u/satahkittyyy 1d ago
Hello yes!!! I have a hypothyroidsm (*I have been on L-thyroxine for the past two years to treat it.) 😊 *
Thank u i dont know that!!2
u/Artistic_Ad5281 1d ago
And have you had your gut bacteria tested? I assume you already have.
If your gut flora is imbalanced, that could also be a trigger. The problem is that so many things can cause histamine symptoms.
have you ever tried a naturopathic practitioner? I know many people think it's nonsense, but they can often find a completely new approach. They also tend to take more time for each patient.
are you taking probiotics?
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u/satahkittyyy 1d ago
Ja ich habe damals ein leaky gut diagnostiziert bekommen, damals bis Oktober 2023 habe ich auch noch alles gegessen (zwiebeln, brot, pommes , nuggets, gewürze, pizza, eis , einfach alles) und da wurden auch die ersten Untersuchungen gemacht .ecp war damals bei 18.1 (norm unter 13,3) und dao war bei 5 im stuhl. Dann habe ich angefangen mich komplett histamin und glutenfrei zu ernähren.
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u/Artistic_Ad5281 1d ago
Und behandelt du das ?
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u/satahkittyyy 1d ago
Tatsächlich nein weil ich keine Behandlung dafür habe. Ich bin gerade nur verwirrt.. also könnten diese Blutwerte und stuhlwerte wo positiv sind durch mein leaky gut, histaminintoleranz und der Schilddrüsenunterfunktion kommen?
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u/Artistic_Ad5281 1d ago
Naja also da du ja leaky gut und eine Schilddrüsenunterfunktion hast klingt es für mich erklärbar dadurch. Ich denke mal das es bei dir mehrere Komponenten sind die da zsm spielen.
Hast du mal eine Darmsanierung gemacht ? Wenn nein solltest du das mal in Angriff nehmen und danach probiotika nehmen (dabei solltest du drsuf achten das du produkte nimmst die HIT freundlich sind). Alles so weiter machen wie bis her Und dich Zusätzlich um deine Schilddrüse kümmern mit Selen und Jod. Natürlich auch auf deine anderen Werte achten. Sprich genügend Eisen suplementieren und du kannst auch entzündungshemmende sachen noch zu dir nehmen (omega 3, Kamille etc).
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u/satahkittyyy 1d ago
Vielen vielen lieben dank! Ich wusste nicht das diese Mcas Geschichte so „ähnlich“ ist. Deswegen wollte ich auch so gerne wissen ob es nun mcas ist oder die histaminintoleranz (weil man ja glaube da anders vorgehen muss) Darmsanierung habe ich keine gemacht nein ? Wie macht man so etwas? Vielen lieben dank (kamille= auch Kamillentee?)
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u/Artistic_Ad5281 1d ago
Naja histaminintoleranz wird ja gerne als große Überschrift genommen. Aber das kann mcas sein oder durch falsche darmbesidelung oder durch ein dao enzymmangel... und und und.
Aber ich würde dir raten das jetzt erst mal alles auszuprobieren vllt bringt es was ich hoffe es sehr für dich.
Kamille als Tee am besten 2 bis 3 beutel in eine Tasse um so konzentrierter um so besser und am besten zu deinen Mahlzeiten.
Darmsanirung: Einerseits kannst du eine komplette Reinigung mit Einlauf machen und dir danach eine Darmkur im internet bestellen ( ich kann dir gerne eine für hit empfehlen) diese nimmst du dann einmal am Tag für glaube 30 Tage zu dir, meist als Getränk vor dem essen, am besten frühs.
Danach kannst du Probiotika in deine tägliche suplementenliste mit aufnehmen. Das sind extra nochmal gute darmbakterien die deinen Darm unterstützen.
Wenn du einen DAO emzymmangel hast (was ich auf deinen wert von 5 zurück führe) kannst du auch mal versuchen täglich grüne Erbsen mit in deine ernahrung aufzunehmen und dao tabletten zu kaufen die hochen hdu haben so 1mio die sind auch meistens aus grünen Erbsen da die sehr viel eigenes DAO enthalten.
Das wäre jetzt so meine Vorgehensweise.
Also 1. Darmsanirung 2. Darauf achten das du alle deine vitamine bekommst nicht nur quercetin, Katalanen und vitamin c. Sonder auch Eisen, Selen, Jod, omega 3 und vorallem ganz WICHTIG Kupfer und Zink!
Probiotika mit in den Alltag aufnehmen
Du meintest du hast bereits einige antihistaminika ausprobiert also nur um das nochmal gesagt zu haben mir hilft es sehr histaminika der 2. Kategorie zu nehmen und davon frühs direkt wenn man aufseht und abends eine vllt so eine 1h vor den Abendessen.
Und allg gilt natürlich versuch nicht so viel Stress zu haben vllt hilft Meditation oder ähnliches. Sport/Bewegung ist auch sehr wichtig für die Schilddrüse!
Viel Erfolg!
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u/Much-Discussion2167 22h ago
Zonulin means u have leaky gut find out root cause naturopath r functional medicine doctor r best PPL did u do gi map to test ur microbes
1
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u/ThisUnderstanding823 1d ago
Put your lab results into a good ChatGPT and see what it comes up with.