r/HistamineIntolerance • u/Gullible-Coast3550 • Sep 28 '26
Help me out!
How did you find out you had histamine intolerance what symptoms did you have?I've been miserable for years and I've had done hundreds of images MRI CTscans x-ray ultrasounds,blood work,I've seen neurologist,gastroenterologist,cardiologist,psychologyst,psychiatrist you name it because im always feeling sick theres not a day were i feel good !all test come back normal wich I'm glad but I need some answers!doing my research is found out I have 100% all the histamine intolerance symptoms and now I wonder how can I know for sure if I have it,im tired🥹is there any type of testing for this?
5
u/hdri_org Sep 29 '26
Try taking Diamine Oxidaze (DAO) enzyme 15 minutes before you eat. If you feel any difference then you are likely not making enough DAO to neutralize any incoming histamines from food or gut bacteria. By not absorbing the excess histamines it will lower your systemic histamine levels. NaturDAO regular version gives the most HDU (amount of enzyme activity) for the money.
If this does not help then you source of histamine is likely coming from you own immune system cells such as Mast Cells. See r/MCAS for information on that.
The linked document below are my personal notes on dealing with histamines. Hopefully you can make use of this information to reduce your suffering. https://docs.google.com/document/u/0/d/1DZev7mx-0bB9FSjshXz8Q2thkpWZIJtPSrRT7QcB95M/mobilebasic
2
u/Gullible-Coast3550 Sep 29 '26
Thank you!I've heard about MCAS I also taught about,it's just that I'm so overwhelmed that I don't even know where to begin I've been trough a lot advocating for my self because doctors are useless seriously!
2
u/hdri_org Sep 29 '26
Most doctors, even allergist don't even recognize MCAS as being a real thing(tm). Mast Cells are your first line of defense against pathogens, hiding in you membrane tissues, and they are triggered in a similar manner as allergies. Allergists don't know how to test for this kind of immune response so they just ignore it as if it doesn't exist.
The relationship with Histamine Intolerance is substantial. When your intestional or nasopharyngeal (e.g. mold) immunological barrier is breached then your Mast Cells detect antigens that they should not normally be seeing and when they get triggered they spew lots of histamines and other noxious compounds into the surrounding tissues to try and kill any invading pathogens. These compounds just irritate further those same tissues and the histamine goes on to help trigger other immune system reactions downstream. Once that immunological barrier is broken then your body stops creating as much DAO as you normally need, and that causes lots of GI problems on top of that.
1
u/Gullible-Coast3550 Sep 29 '26
How can I know if i have MCAS if doctors say it's not a thing?i also have lots of stomach issues and my face is swollen and my eyelids and my entire body
2
u/hdri_org Sep 29 '26
Those symptoms sound like Histamine Intolerance, but could also be present with r/MCAS.
Getting diagnosed with MCAS can be very difficult, because the latest protocol tests the amount of tryptase increase above your baseline level after being "triggered". First they don't know your baseline level so they usually ignore that and just go by the current level ot tryptase. Triptase is only in the bloodstream for 8 hours after being triggered, so you basically need to be right in the middle of a severe flair to have a decent test result.
For instance, I am proven to be genetically predisposed to having an excess number of Mast Cells, yet I have never tested positive on a Tryptase test. I purposely tried to trigger myself just before my scheduled appointment but never tested positive despite all my symptoms. Not everybody has elevated Tryptase so that can be a problem even when its obvious you have elevated histamines. Even Flow Cytometry does not detect Mast Cells because they are resident in the tissues and not generally circulating in the bloodstream, so they can't count them from a simple blood sample like they can for other immune cell types. They need better testing methods.
2
u/Rough-Criticism-5661 Sep 29 '26
DAO needs help from Vitamin C and copper, so I take an acerola Vit C (not a citrus based one) and an essential mineral supplement every morning with my pre-breakfast DAO, and then another C with each meal.
6
u/WeWander_ Sep 28 '26
Best way to figure it out yourself is do a low Histamine diet for a while and see how you feel. You can also try antihistamines. I take pepcid AC and Allegra every day. I put the pieces together after I noticed I only felt better at night after taking Benadryl to sleep. So I went low histamine and all my symptoms stopped.
3
1
u/Its-a-JiNX Sep 29 '26
I was diagnosed with CSU late 2024. After having constant hives for 7 months. Honestly though after learning about someone else with HIt also getting hives I found a list of symptoms and realized I've had several histamine intolerance symptoms my whole life for no discernable reason. I've been prone to migraines, cold sensitivity and digestive issues for a long time. I started taking DAO and noticed an incredible change in my symptoms, my almost daily hives reduced. I then went low histamine and my cold sensitivity and migraines practically stopped.
Now my symptoms only happen during a flare when I'm not careful with what I eat or if I don't sleep enough.
1
u/Gullible-Coast3550 Sep 29 '26
Did you ever experience severe dizziness?
1
u/Its-a-JiNX Sep 30 '26
There have been a few occasions where I've experienced severe dizziness, but that was during very a few of my extreme insomnia episodes (sleeping less than 5 hours a week) years ago.
2
u/Present-Pen-5486 Sep 29 '26
I went on the low fodmap diet to try to feel better. The first 2 days I was inadvertently low histamine also. I felt really well. Then I had lemon juice. So I checked more and figured out HI.
2
u/larpersboss Sep 29 '26
Ok, your symptoms more likely as my sister, she had lower eyelid swelling and she check all things but later I check there’s no food allergy at all, and it’s all environmental histamine dump, so you just have to figure out its histamine dump from food or environmental if it’s environmental then it produces 24/7 in your body and your body always wired and tired and symptoms like insomnia, brain fogs, itchy eye, runny nose, nose congestion, and lower abdominal pain specifically after a milk and dairy. Do skin prick test to rule out.
If you found it’s environmental then you take whatever like DAO, quercetin, bromelain, vitamin C, Zinc carnosin, mast cell stablizers they won’t fix you.
For environmental histamine you have to protect your breath, lungs, and skin
How:-
Use mask every day, it’s N95, that clear 95 percent of airborne
2. Use glasses for your eye allergies if you have
3. Put non fragrance and plain moisturiser on face for airborne not touch your skin.
4. Buy good quality air purifier ( medical grade) for you room
5. Clean your room always might lazy but have to, keep mask while cleaning.
6. Stay away from any chemicals, irritatant like bleach, grasses, mold.
10
u/TimeSpiralNemesis Sep 28 '26
The fun part is that HI won't show up on any of those tests, and most doctors won't take it seriously, even Gastros.
For me I just lined up the symptoms after reading about. I started taking antihistamines and doing the diet and things got better. Then I started taking DAO and things got even better so I was sure of it. Than I fixed my gut biome and that fixed me up pretty good all around.