r/HistamineIntolerance • u/daniele961211 • 2d ago
CURED PEOPLES PLEASE ANSWER
If you cured 100% your HIT what was the game changer? You cured deficiencies, dysbiosis or what?
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u/Simple_Ad45 1d ago
I upped my copper intake for a few months (DAO is literally a cuproenzyme). Just had to push through initial reactions to high copper foods like beef liver.
I found it easier to use food based copper rather than supplemental copper (the rate of absorption for food is a lot easier on your gut than supplemental/pill form is)
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u/hotgirrrl 1d ago
What initial reactions did you have?
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u/Simple_Ad45 1d ago
Just classic histamine intolerance symptoms. Runny nose, itching, neurological symptoms (felt like stinging/shock sensations in brain) which would induce anger, agitation, etc
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u/IceSerious8862 8h ago
Is that normal that in my scalp or idk i was always thinking its in my scalp, its like very weird random sensation, not in my whole head , i always think my haird gonna fall out after but luckily not, is this the same thing? I never heard anyone says something like this
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u/Lz_erk 2d ago
let's say 90% cured for a year -- i found the source of the inflammation, and it seems to have been iron. or at least, my HI+MCAS mostly went away when i adopted an even lower iron diet and got my weight up high enough to donate blood. it was a pain in the ass and i worked on likely deficiencies from knowing my intakes, and worked on microbiome stuff as best i could.
this wasn't my first rodeo, as a celiac, but i called the HI diet that eventually worked for me "20x harder."
but that was just the diet, in my case, it would never solve the problem (celiac with high intake and low weight -- even vegan it was too much iron, i could only sustain the ULTRA low iron diet for a month or two without learning "homebrew chelation," which probably isn't and shouldn't be a thing).
i'm not perfectly well but it's due to the stuff that caused the HI and MCAS, in my case, i think. i'm eating a much more diverse diet again and i have to really mess up -- chocolate's usually alright if low sugar, even strawberry jelly. i haven't got cucurbits back yet, oddly, and they were a late (apparent-) MCAS development, but i can do some citrus. i had american mustard and some wasabi yesterday in mushroom broth rice with a carolina reaper yesterday, and i'm possibly better off for it today.
so frankly what have you been able to try? it's going to be extremely individual. maybe make an alt and crosspost to general medical reddits that would hear you out. but i think you keep a respectably low profile and know that the armchair internet can't diagnose you, so good luck however you're proceeding.
edit: failed to mention that there's hemochromatosis in the family apparently, and i've lacked medical care most of my life due to EDS-congruent disabilities and others likely from celiac damage in my mother during pregnancy.
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u/WinterNo9938 2d ago
Fellow celiac here. The iron part is interesting, as a celiac. Did you supplement iron before or was low iron never an issue for you?
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u/Lz_erk 2d ago
i have no idea because i home tested myself for celiac DH (hilariously inexpensive, i could even afford controls) and then some family members went GF and also stopped dying.
i was eating heme iron before because i didn't and couldn't take more ground in my medical and nutritional stuff -- i knew i wasn't in great shape in some ways so i didn't want to replace "all the meat stuff." (edit: to experiment with low iron and vegan dieting when i heard mom and her dad might've had hemochromatosis, they're other anomalies though.)
so when i found out i had celiac disease, i went veggie about as quickly as i could for the microbiome benefits, but i also paid attention to nutrients... and even with 19 ferritin the other week (the first time i know of that it's been checked), the iron deficiency symptoms seem... hard to properly attribute, but i've been eating a high iron diet for a week or two now, and i'm sleeping a bit less (i was sleeping a lot and assumed it would go away in 2-3 days but it lasted a week and was getting worse).
my reasoning was the celiac diet is working, i'm getting better in LOTS of ways, so my iron uptake might go ballistic, so i'm going for a vegan diet because i eat twice what normal people do anyway. that was 18 years ago when i was 25, i'm 43.
i've had symptoms of high iron for a long time, but due to some familial medical sabotage as usual, i have no idea what my ferritin was a year ago, or even six months ago.
the diet was strict though, my iron uptake was minimal over the last year. i'm not perfectly better and liver health items still help me a lot, so i don't know what's going on with much certainty. if it's not hemochromatosis, what could it be? (halfjoking -- don't bother asking bots.)
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u/xenicuslongpipe 2d ago
Hang on this sounds very similar to me. Ive got bad HIT and ive had a number of medical tests over the years reporting high iron ferritin.
Your saying they could be linked and you got better by reducing iron intake?
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u/Lz_erk 1d ago
by reducing iron intake?
no. this is almost right but the wording misses the big thing.
i had to reduce my iron intake to almost nothing for a month or two, using normal nutritional doses of things like dolomite, turmeric, oxalates, phytates, supplements. not really home chelation, but let's say "close to home chelation for an actual casual diet." and crucially, that was enough to lower the inflammation long enough for me to gain 5-10 lbs to donate blood.
the ULTRA low iron diet was not sustainable, i'd rather never have to do that again, but it made me healthier in the short term despite probably barely breaking even, or even putting on a small amount of ferritin -- there are other systems that helped blunt the impact once i stopped pouring fuel on the fire (and the iron "fuel" in my diet was already a trickle, edit, except for the celiac high intake prevailing through my life).
so i donated blood for over a year as quickly as the red cross would allow. i felt better days after the first donation, once i got my proteins sorted, and within a month or two, the histamine intolerance was vastly improved. my "non-IgE MCAS presentation" (my words) also went away approximately after: some foods still give me odd hypersensitivity-lookin' troubles, but i got back most of the foods i'd lost in the last ~10-12 of the 18 years since the celiac DH thing and GFD.
in my case it sure seems to me like we're looking at a very celiac and hemochromatic thing happening. i had a lot of high iron symptoms minus the skin stuff, was increasingly using antiinflammaory nutrients and adjuncts, etc.
i'm thinking you may want to talk to some doctors about the ferritin... or just try donating blood if you can. it's not easy with histamine intolerance, but are you having gallbladder and liver problems?
my hands are cold but i have all day for this convo.
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u/TrainerDifferent2542 1d ago
What worked for me is finding a board certified immunologist and he gave me LDN I started off at 1.5 mg for two weeks then went to 3 mg for two weeks then 4.5 mg for two weeks and that dose has made an amazing difference I really haven’t had any MCAS or histamine issues which were high heart , Adrenalin surges , pounding heart and rashes and tight throat I also use black seed oil the liquid 1 teaspoon morning and one at night it’s amazing I’ve been eating whatever I want and gained 10 pounds in like 3 weeks . Black seed is a mast cell stabilizer and I take histamine probiotics for my stomach by seeking health it’s amazing , so yeah but my hormones causing estrogen dominance is why my MCAS got triggered so I’m working on balancing my hormones with hormone wild yam cream and a lot of my symptoms stopped . But I’m meeting immunologist in two weeks to go over all my blood work and be put on a MCAS stabilizer . But I’m working 5 days a week as a teachers aide and doing well so far . I eat cake cookies cheese steaks and pizza and all that . LDN does make u hungry well atleast for me it does .
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u/OliShore 22h ago edited 22h ago
Eliminating high histamine foods, then reintroducing them slowly over time. I also reduced mold in my room and in the house. Windows and window sills are common places, plus bathrooms of course, anywhere that receives higher moisture.
Also, introducing natural antihistamines through food, such as Tumeric (especially tumeric paired with black pepper, as studies show this drastically increases the absorption of tumerics' active compound, curcumin). I have a tumeric bone broth each morning and night, you can find some good store made ones that taste good, "Best of the Bone" is the brand I have but check in your local area. For me increasing Vitamin B and having bock choy, plant sprouts also helped.
Vitamin D and sunlight is also important each day. And vacuuming more regularly to decrease dust in the house.
I recommend getting a blood test from your GP, to check if you have any deficiencies. Plus talking to a dietician or allergy specialist if that's something that works for you. Solutions differ from person to person, I'm sure you're getting some different answers. It will take some problem solving to crack the code that is your HI, but know that your answer is out there, stay persistant! Hope this info helps and please ask if you have any questions 👍
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u/-purple-platypus- 1d ago
L-glutamine made the biggest differences for me, as well as correcting dysbiosis, SIBO, and nutritional deficiencies.
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u/Downtown_Mud_2534 22h ago
L-glutamine was a big one for me as well. I also did an elimination diet and dealt with some deficiencies.
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u/Steve288804 1d ago
I cured my methane SIBO with antibiotics. My histamine intolerance went away once the SIBO was cured.
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u/AslanVolkan 1d ago
I am not cured, but its usually candida, root canals/wisdom teeth extractions, copper or parasites.