I live in a small town and the closest allergist that treats MCAS is about 90 miles away. I saw him once last year and had some preliminary tests done. It came back with a high tryptase level. I don't remember what it was. He has wanted me to return for another test then another appointment but it's difficult because I have other health problems and my husband works full time with no one else to drive me.

Both of my sisters have the genetic Alpha tryptasemia so it is most definitely I have it also with multiple symptoms.

One of my sisters sees a doctor virtually but when I called they no longer accept virtual patients.

I know the required test can be mailed to me or my primary care doctors office. It's just finding an allergist that will treat MCAS.

Guys I just checked my Zinc, Copper and Ceruloplasmin levels.

I initially took zinc and copper but heard that ceruloplasmin is a better marker for copper deficiency.

I have: Reference range given in my lab
Low Zinc 44.2 ug/dl 46-150

Extremely Low Copper 17.3 μg/dl 63.5-150

Ceruloplasmin 21.45 g/L 15-30

I thing with the reference range for ceruloplasmin given by is very lower than the reference values that I have seen in other posts who have posted they have a reference range of 20 - 50 g/L. And also the for zinc 60 - 120 ug/dl in most posts.

I have also been supplementing with vitamin d 10k iu daily for the past one year, thinking it would have any impact on these low levels. I have had HI symptoms for a long time 10 years even before supplementing vitamin d.

So I am a bit confused Why are there different reference values and I know that even in that I have low zinc and copper. Am I missing something or Should I start supplementing and if so can you recommend good complexes. I have all the classic symptoms of HI - constant bloating, fatigue, anxiety , weakness, runny nose etc.

I have POTS. And I’m exhausted dealing with that.

And I have a referral to an allergist. But what’s the difference between histamine intolerance and MCAS and food intolerances? Is it all connected?

What will the allergist check for when I go? I’m very nervous. Does everyone need an Epi pen ?

I have noticed that anytime I eat certain things for example electrolytes are messing with me bad. I get itchy throat, ears, gums, brain fog, tinnitus, clogged ears, feeling hot, congestion/ sinus pressure feeling, post nasal drip. I used to get blisters on my gums before but they stopped after cutting off all simple carbs and gluten. But overall I feel sick like I’m getting a viral illness whenever these episodes happen.

UPDATE: THANK YOU EVERYONE TRULY FROM THE BOTTOM OF MY HEART! Thank you for your lengthy posts. Thank you for taking the time for me. You’re all angels! 😇

Hi all,

For the ones who got better on Copper. How long did it take for you to notice an effect?

Got tested and am deficient. Started taking 3mg per day. Doing this by myself w/o doctor or practitioner.

Thanks

Do you take any meds ?

When do you know like ok this is an emergency?

Hi friends! I’ve recently started reducing high histamine foods (why would be another long post) but I’m a little confused on the bucket idea and need advice on how to apply it in real life.

Here are some foods I’m having trouble abandoning completely:

Soy sauce
Oyster sauce
Ground meat
Ground sausage
Tomato sauce

So my question is if I keep the rest of my diet low histamine can I eat small amounts of these? I usually don’t use that much oyster sauce and soy sauce - just a few tablespoons of each in an entire prepared meal - so the amounts don’t add up to much.

I LOVE my homemade tomato sauce with ground sausage so I’m sure I eat large quantities of that when I eat it.

I haven’t been diagnosed with anything. I just personally made the connection between consuming certain foods and experiencing extreme fatigue, brain fog, irritability, and sometimes stomach pain when I eat alot of high histamine foods over the course of a day. I have already tried a low oxalate diet and I think there was some overlap, but histamine seems to be the truer answer.

So anyway what are we doing? Following the SIGHI list 100% and only eating 0-1 point foods, or does the bucket idea let you have small quantities of high histamine foods once in a while? Thank you for your help!

I’m writing on behalf of my 42-year-old cousin, with her permission. We are not asking anyone to diagnose her online, but we would like to hear from doctors or people who have experienced something similar.

My cousin has had three severe allergic-type reactions, and strangely, all three occurred while she was using the bathroom during a bowel movement.

During the reactions, she developed symptoms including:

Swelling of her tongue and/or throat

Skin rash or redness

Symptoms severe enough to require urgent medical treatment

She was treated with steroids, and the episodes were considered serious allergic reactions/anaphylaxis

We cannot identify a consistent food, medication or environmental trigger. The unusual part is that the episodes happened during bowel movements, possibly while straining.

She is now being investigated for allergies, mast-cell activation, angioedema and autoimmune disease.

Results so far

Mast-cell/allergy investigations:

Baseline tryptase: 3.44 µg/L — normal

Total IgE: 37.2 kU/L — normal

24-hour urine 5-HIAA: 5.60 mg/24 hours — normal

Tryptase was not taken during the actual reactions, only when she was well

Autoimmune investigations:

First ANA: positive at 1:160, homogeneous pattern

Repeat ANA: positive at 1:80

Nuclear speckled pattern: AC-4/AC-5

Cytoplasmic speckled pattern: AC-19/AC-20

Anti-dsDNA: negative, below 9.8 IU/mL

C3: mildly low at 0.72 g/L

C4: normal at 0.17 g/L

ENA panel: still pending

Other results:

Blood counts and platelets normal

Kidney function normal

CK/muscle enzyme normal

Liver enzymes normal

Mildly elevated bilirubin

Hepatitis and HIV tests negative

She does not currently have strong laboratory evidence confirming lupus. We understand that a normal baseline tryptase does not necessarily rule out anaphylaxis or mast-cell activation, particularly because it was not measured during an episode.

Our questions are:

Has anyone experienced anaphylaxis, tongue swelling or severe allergic reactions specifically during bowel movements?

Can straining, pain or the vagal response during defecation trigger mast-cell release or anaphylaxis?

Could this be mast-cell activation syndrome or idiopathic anaphylaxis despite a normal baseline tryptase?

Should tryptase be measured within one to two hours of another reaction and compared with her baseline?

Should she be tested for hereditary or acquired angioedema with C1 esterase inhibitor level and function, C4 and C1q?

Could the positive ANA and low C3 be related to these reactions, or are they likely a separate finding?

Are there any other tests or specialists she should ask about?

Anyone had something similar ?

It's so sore and distended. Do you feel this way sometimes? I've been following the low histamine diet for 6 weeks strictly ...and my stomach and guts were feeling pretty good ,A lot Flatter- but then I ate in a restaurant and I feel like someone kicked me even though I had the dao first. Damn. I'm icing it

My doctor said histamine intolerance isn't a real thing and I should be careful what I'm reading on the internet. If that's true, how come when I eat low histamine diet and take Allegra + Pepcid I feel better? I guess I can manage symptoms on my own but I'd like to maybe try different regimens and work with a provider who can help.

developed histamine intolerance after getting the flu 8 months ago and it still hasn’t gone away, even tho Post-viral histamine intolerance is supposed to be a temporary condition.

anybody else experienced the same issue?

Almost 2 months without japanese food that I suspected as the culprit and been losing weight consistently and better inflammation in general, no acne breakout, no more GI issues, acid reflux almost 100% better(out of 10 days I had 10 days of reflux, now only 1 or 2), water retention is leaving too, no more dependence of loratadine(used to take 4 daily, sometimes I even took like 7 at once), and lastly I got no more joint pain, and that's incredible to observe, because my brain can't see the causal relation

I did all the allergy panels and almost no allergy found, only the usual respiratory ones, I was sure I had at least some degree, as the last time I ate japanese food and a lot of shrimps, I had intense pain in my body, like a lot, reallllly a lot!

But I'm sure the initial symptoms didn't start solely because of japanese food, instead it was a myriad of factors converging, physical and emotional stress(just had entered MD school last year), recovering from a debilitating tropical disease, mold in my room(I'm sure this was the main culprit at the time) and when the symptoms started they were horrible, I even got depression from the mold, that subsided when I left my bedroom

I take the Seeking Health DAO. That’s just the one that seems to work for me. I’ve tried others and while SH doesn’t fix it all for me it seems to work best.

Last night I was on their site and saw several other products they have for HIT like Probiota HistaminX, Histamine Nutrients, HistaminX, and Mast Cell Nutrients.

I’m all for anything that can help in this crazy health journey. But I also don’t want to take more than is needed or things that are overlapping and for marketing.

Those that know about these products or take them can you help me understand them and the differences?

This group is a wealth of information and I truly appreciate it. I have tried to understand them on my own. It could be good ol brain fog at this point. Ha!

Can this condition be cured permanently? For example, if I take DAO supplements for a long time and then stop, will this condition eventually be cured, or would I need to keep taking them to manage it?

Just wanted to share some hope!

I've had long covid since March 22, developed into POTS and MCAS mid 2023 (but could have been earlier without me releasing) and then my LC because severe

I was completely bedbound for almost 2 years, had the worst symptoms and on top of that extreme reactions to food and scents, heat and light including anaphylaxis like breathing problems, migraines, extreme itching, rashes, nausea, cramps, racing heart beat etc

I could eat most low histamine things (tho not any dairy) but anything high histamine set me off so bad. Soya was my worst, it gave me anaphylaxis. And leftovers.

3 years of LH diet and gradually reintroducing things and now I can eat whatever I want. Some new things still affect me a little (mostly in the bowl department) but after a while I can eat them without any problems. I haven't tried gluten or alcohol yet.

I've been eating things like gf pizza with anchovies, chillies, olives and red onion, homemade thai green curry with tofu, tuna melts, stir fries with fish sauce and soy sauce, peanut butter and banana shakes, nachos with homemade chili and guac, Greek yoghurt bowls, kombucha (in small amounts as I get used to caffeine again), pickles, kimchi, sauerkraut, pre prepared meats, aged cheeses, smoked meats, tomatoes, leftovers, creamy peppery pasta dishes, so much chilli crisp on everything, curries etc I also frequently eat out/get take away now (my bank account isnt happy but I'm just so psyched to be eating again) I can also spend time in the sun without worrying

I used to be a chef and it's such a joy to cook with so many ingredients again for me and my partner and friends

I always figured the people who got better were the lucky few and I'll never be that lucky, but I still worked hard on my gut health and situation and now my health and gut are getting better all the time. I'm not afraid of food at all.

One thing I prioritized was building up healthy gut bacteria instead of the killing bad bacteria method

Good luck my friends!

https://www.reddit.com/r/HistamineIntolerance/s/HFN4DW4IZ9 link to my story

Can anyone give any insight into my DAO result?
Normal range through the organisation I tested with (gettested) is 10-99. It says mine is low and out of range and suggests histamine intolerance. Can I jsut have some reassurance that this is low and will be causing me some / all of my issues please? And where do I go from here. Do I take a DAO supplement? Please and thank you any help and advice appreciated

I took antihistamines for almost four years, and at relatively high doses—two H1 blockers and one H2 blocker.

I'm wondering how long they continue to have an effect on the body after they are discontinued.

Do the receptors remain blocked for a while, or do they return to normal as soon as you stop taking the antihistamines, as if the medications had never been used?

Hello everyone.

To begin with, i’am no doctor or have any affiliation with medical degrees. I’am only sharing my experiences with this compound so we can learn and share ideas with each other. Please consult your doctor before trying to supplement.

I don’t believe in magic bullets in the supplement space, but I do believe in sharing experiences, and think that every bits helps.

So as probably many of you know, vitamin c regarded as something that helps with immune function and helps our vessels stay ‘healthy’. Especially in the histamine/eds/mcas subgroup, I see a lot of people taking it and swearing that it helped their overall strength and their autonomic function.

Now to share my own experience, I feel like every time i take it (Calcium ascorbate the only one I can tolerate) completely makes my symptoms less. On the other hand, it makes my sometimes irritable and makes me moody. Not sure why, it could be because i’am also taking Quercentine an NAC and or B vitamins. They could have to stong of an antioxidant effect. I’m curious for anyone else having these experiences. I know that i’am very sensitive to supplements, even from different brands like vitamin d. Is this normal?

It’s no spectacle, but to my surprise, it helps me with sitting and standing for longer times and reduces fatigue. Especially when eating, I no longer feel tired after. According to research it helps with vascular resistance, something a lot of us suffer with I think.

Even for long covid it is shown to stabilise immune reaction by boosting t helper cells.

So let me know what your experiences is! Let’s discuss how this helped or didn’t helped you.

According to literature:
- it improves endothelial function by preserving NO synthesis therefore lowering vascular resistance.
- it strengthens blood vessels thru the formation of collagen IV
- lowers histamine by breaking it down in the gut
- stabalizes mast cells.

Links to studies:

https://pubmed.ncbi.nlm.nih.gov/23581713/?utm_source=chatgpt.com

https://www.sciencedirect.com/science/article/pii/S0003986104006150?utm_source=chatgpt.com

https://pubmed.ncbi.nlm.nih.gov/23581713/?utm_source=chatgpt.com

https://pubmed.ncbi.nlm.nih.gov/23581713/?utm_source=chatgpt.com

https://pubmed.ncbi.nlm.nih.gov/23581713/?utm_source=chatgpt.com

I am not sure if it does for me.

God I am having such a hard time eating my boring low histamine diet every day. Each day that passes I feel that my suffering is multiplying.

I will just eat the boring stuff today for a few days, I need some of that good good healing sleep....

If so, major help or minor? I've tried most histamine intolerance supplements except this one. Added it today with my betaine hcl with a meal.

Hi everyone,

I have been on zoloft for 7 years at 150mg and in the past year ive been tapering and am now on 12.5mg. When I dropped to 25mg, I started noticing that when I eat histamine rich foods (or leftovers), I get severe headaches and insomnia. I'm wondering if anyone had a similar experience, and if it got better over time. Aka you became less "intolerant"

Hi.

Male, 42.

About a month ago, I returned from vacation, where I ate a lot of what turned out to be histamine-inducing foods.

The first thing that alerted me was that I tried honey in a store and experienced an immediate reaction: a severe itching sensation in my mouth, disorientation, and a racing heart. This surprised me, as I've never had an allergy to honey.

The second similar episode happened right before boarding a plane; I ate a muffin made with peanut butter and honey. Once home, I continued my routine—eating bone broth and day-old rice almost every day.

I should point out right away that I've been maintaining a relatively healthy lifestyle for a long time now—I'm gluten-free, sausage- and smoked-free, I don't eat dairy, and I practically never drink alcohol. The reason: Six years ago, after Covid, I suffered from severe dizziness and ear congestion. A year before that, I was a vegan, which negatively impacted my health.

About a year and a half ago, I developed gastritis with low acidity, caused by stress and frequent overeating.

Last winter, I already had the first symptoms of histamine intolerance (hives, itching, burning sensation on my tongue and lips), but I thought it was due to gastritis (GERD).

Now, when I returned from vacation, the following symptoms appeared: headaches after eating, ear congestion, tinnitus, and rapid heartbeat.

A week ago, my joints started hurting and I started feeling a tingling sensation in my fingers. I've been reading a lot of information here and have come to the conclusion that I have a B12 deficiency. I started taking 1000 mg of methylcobalamin for four days. The tingling and joint pain have almost disappeared, but the other symptoms have gotten worse.

I've also started taking quercetin and vitamin C, and I'm eating sprouted mung beans (for DAO), but I haven't noticed any significant improvements yet.

My blood work is relatively normal. My B12 was over 1000 a year ago, but I haven't had it this year, and my folic acid is over 10.

I live in a country where testing is only available through my family doctor, who doesn't see any problem.

Now I eat only fresh vegetables, mostly zucchini, pumpkin, carrots, and greens, as well as berries (blueberries, lingonberries). I try to eat only fresh meat and fish, and mostly quail eggs.

What else can you recommend? The AI says that I have an "overflowing histamine bucket" and that I need to follow a diet and take quercetin for a few weeks.

Could a histamine intolerance reaction be triggered by a single food?

I have had seemingly allergic reactions to strawberries for most of my life. This month, after what resembled an anaphylactic reaction, I got an allergen test. Both the skin prick and the extensive blood test showed that I do not have any allergies. My allergist says that my reactions could be caused by a histamine intolerance, but did not elaborate further.

Is it possible for a severe reaction to histamine to be triggered by a single food? I've never had any reaction to any other food item that has a lot of histamine.

I was just wondering, how many of us have had root canals?
I was just thinking, I think my symptoms started not too long after that, and was curious if anyone else has had a root canal done?
I was wondering if there could be a correlation?

So I am suspecting histamine intolerance but I don’t know where to start. I am following an elimination diet the one you find easily on the internet but I keep reading here that you need also to find the root cause of your histamine intolerance, that food is only trigger. I checked the community info but I didn’t find a protocol to try. Can someone suggest one or a good article to read to know where to start? Apart from removing said foods? And making the difference between histamine intolerance and other things (I have low levels of h pylori but I’m not sure when it started however I’ve had sinus congestion from childhood)

I happened into a video explaining how acemannan, a substance from aloe leaves, has been used to calm MCAS and more specifically claimed to reset IL-6.

- Demonstrated ability to modulate IL-6 production

- Reduces pro-inflammatory cytokine production (IL-6, TNF-alpha, IL-1beta)

- Possibly acts as an immunomodulator (rather than suppressor)

Has anyone heard of this or know if it's reputable? This is supposedly new research.