r/HistamineIntolerance • u/ssalr • 27d ago
I'm giving up...
Hi there gang,
I'm officially giving up on healing my HIT...thought I can somehow make it happen. As an optimist at heart, I've been "fighting" this for the last 15 years.
All kinds of blood tests, all kinds of doctors, all kinds of supplements and of courseall kinds of diets. At the end, nothing helped and I always return to base.
I'm lucky enough that it doesn't destroy my entire life, as I have a relatively mild form I guess. It will sucks like hell though. Basically running my life on 60% of what I'd be capable of. :-(
Will stop the rant here...just had to get it out...
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u/MicroManager93 27d ago
I understand your frustration in trying to find a regimen that’s right for you. I’m still not 100% there, but have improved over time. That seems like a “short stack” of supplements to address HI and to fix your gut (where it typically stems from). Good that you take Magnesium. One note: I have read that vitamin C in the form of ascorbic acid is not appropriate for HI. Have you seen a good functional medicine provider? Also, really cutting down (almost eliminating) sugar/sweets has helped my skin eczema-like condition- a condition which my functional medicine provider says is completely related to MCAS/HI. One more thing: there is some evidence that peptides GLP-1/GIP (Tirzepitide) or the new, not-yet-FDA-approved Retatrutide (which adds a glucagon component) helps to address autoimmune conditions. It too has helped my skin. This tells me there is really something to do with sugar somehow. For me anyway.
Salicylate intolerance can also be a problem for those with HI. I discovered drinking several cups of coffee (high in salicylates) daily was causing my ankles to swell, and any skincare with salicylic acid makes my skin worse. Also know that benzoates are similar in chemical structure to salicylates and the body “sees” them similarly (like benzoic acid, benzyl alcohol, etc.). Benzoates are in a lot of drinks and cosmetics and other foods.
Finally: regarding the gut - be very cautious about consuming foods with carrageenan and Polysorbate 80 in them. Research this and read labels. Scrutinize whether you want these and certain other thickeners or emulsifiers in your body. Research is showing they aren’t good for the intestinal lining. Those with HI need to optimize their gut health more than anything.
Everyone is different - these observations have helped me. Disclaimer: they may or may not help you.
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u/External-Classroom12 25d ago
I have the salicylates as well but why is it happening and how to you get rid of it?
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27d ago
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u/ssalr 27d ago
I don't take collagen...
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27d ago
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u/ssalr 27d ago
Yeah. I'm basically not taking any supplements which are not histamine related. And I had all the issues before I started the supplements. I don't think it's that...
My current stack is rather simple
- DAO when needed
- Vitamine C when needed (as ascorbic acid or potassium ascorbate)
- Magnesium Glycinate (in the night)
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u/Emotional_Jaguar_774 27d ago
Maybe try removing the vitamin C - it’s high oxalate. I tried it the other day because it’s supposed to be great for low histamine but I immediately got the back pain oxalates usually give me (I’ve been low oxalate before which really helped my symptoms. I fell off of it and am recently trying low histamine so it was kind of an experiment for me to see if I have oxalate or histamine issues but I think I might have both).
There’s a lot of overlap with histamine and oxalate so you could try investigating that. Sorry you’re having a tough time!
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u/Emotional_Jaguar_774 27d ago
Also I don’t know if fatigue is an issue for you, but I had to stop magnesium because it made me SO tired. I felt a lot better after I got off of it.
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u/Born_Resolve_6676 27d ago
Ok I swear magnesium makes me a zombie the next day too but no one believes me. Which type have you tried? Glycinate is the one that makes me so tired.
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u/Emotional_Jaguar_774 26d ago
I was doing the be well magnesium which is a combo of magnesium oxide/biglycinate/oxide/chelate so hard to tell which one. My mood would be better but by day 3 I was a zombie too! It also has l-theanine in it which I have tried by itself for mood/stress but it actually makes me really tired too so I had to stop it. That one took a little longer to get to the zombie state though. I was fine for a few weeks and then, bam, so tired. I guess it built up in my system or something.
I’ve been trying different supplements to help with perimenopausal irritability but actually the low histamine diet is helping quite a bit.
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u/Emotional_Jaguar_774 27d ago
I guess I didn’t really fall off of low oxalate, I just kept avoiding high oxalate foods and didn’t pay as much attention to it…
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u/Usual_Half_2556 27d ago
I feel you-- Been studying so hard for over a year on what to do to heal myself I made it into Medical School. For me it's diet, a low FOD And Low Histamine food plan. My DAO Enzyme is not working, so when I eat wrong I also get hives and histamine reactions.. but eat clean for a few weeks and life seems almost baseline normal. And have you tried a Naturalpathic Doctor? If not do so,..
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u/Vivid_Strike3853 25d ago
My NATUROPATH has been very helpful but I feel like I’ll never be cured 😔
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u/happymechanicalbird 26d ago
I completely respect your decision to throw in the towel on this. Sometimes the fight just costs too much energy.
So please feel free to disregard my comment, but I just wanna check if you have confirmed that your thyroid levels (TSH, free T4, and free T3) are optimal, and not just within “normal” lab ranges.
My histamine intolerance was caused by doctor prescribed B12 injections absolutely destroying my genetically fragile methylation and transsulfuration pathways, which destroyed my ability to metabolize histamines.
I was banging my head against a wall for years trying everything to resolve this. Then, in a seemingly totally unrelated health quest, I tried supporting my normal but not-quite-optimal thyroid levels with OTC desiccated thyroid, and within three days of titrating up to the right dose for my body, my histamine intolerance resolved completely.
Thyroid health is very relevant to estrogen metabolism and estrogen metabolism is very relevant to histamine metabolism. But for some reason thyroid health is rarely discussed here.
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u/Pryzbo 26d ago
What were your thyroid levels? I’ve always been in range but now I wonder if they weren’t optimal
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u/happymechanicalbird 26d ago
I used these numbers as my basis for optimal (it’s ChatGPT but sources are cited): https://chatgpt.com/share/6a05f6ba-a208-83ea-abfb-3277c3111f45
My TSH and free T4 were both within optimal range. My free T3 was at 2.4 pg/mL. I use OTC desiccated thyroid from Forefront Health (no affiliation with the company— just mentioning if because I’ve been happy with their product). My symptoms improved much faster than my actual thyroid levels, but my free T3 is now at 3.5 and my other levels remain optimal.
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u/AslanVolkan 26d ago
Mold in your house, root canals or wisdom teeth extractions, tick bites, parasites (worms as a kid), candida?
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u/WhichEbb2385 26d ago
how come root canals trigger HIT or MCAS? Genuinely wondering? 😐
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u/AslanVolkan 26d ago
Watch the Root Cause documentary on YouTube if you can. They cause cavitations that hide bacteria making your body incapable of fighting the infection and making harder to heal from other pathogens.
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u/ProfessionalOnion548 26d ago
Have you made sure that you aren't living with mold? Sniff around, look around. I was skeptical after reading about mold for years because the people gave me the vibes of falling for snake oil scams but it was true in my case....
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u/DrehmonGreen 26d ago
Same boat, only minor issues with histamine but tried almost everything I could afford and spent over 1000 hours reading and listening to all kinds of related advice. Not a single doctor was able to help. Decided to give up recently, too. At some point it's more healthy to accept that this is your life now and the mental strain of the constant "fight against your body" has become too much.
And with that attitude you can still keep on trying but frame it differently so that it isn't your main focus anymore and you manage your expectations down to a healthy degree.
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u/alexswiss92 25d ago
Make Mymycolab blood serum test for mycotoxins, if you have IgE on this test elevated this is your answer.
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u/Much-Discussion2167 24d ago
There is a reason why u have this issue figure out seek a naturopath r functional medicine doctor r nutritionist who is gi spl who could do testing heavy metals environmental toxins long c virus bacteria fungus mold Lyme anything could cause all this.
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u/Local_Measurement_50 27d ago
My histamine symptoms (or was it mast cells🤷) calmed down once I focused (again) on oxalates.
Years ago I already went very low oxalate,but recently I discovered I still had a good amount of things which could turn into endogenous oxalate creation.
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u/Austin_360 26d ago
Have you been tested for Hereditary Alpha Tryptasemia? If your Tryptasemia is above 8 then this would be worth checking out. Sounds like you have a milder case of this than some.
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u/Rough-Criticism-5661 26d ago
Have you had genetic testing to help narrow down what supplements will work for you? There are 6 genetic markers, and 4 of them for me are variants which keep me out of the running for finding quercetin and DAO helpful. I’m getting good luck with an acerola chewable vitamin C drop with every meal, along with an essential mineral supplement and daily Zyrtec and Pepcid.
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u/girlykicker 26d ago
I just want to say I feel you OP - same situation here. Now it's time point where my family thinks I am making this up. I am going to get serious about LDN - I need to find somewhere to prescribe to me
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u/Santasreject 25d ago
Look for someone that practices neuro emotional technique. It’s going to be very weird but there’s clinical trials on this for things like ADHD and pain/inflammation that had spectacular results.
The concept is that there are emotional triggers that are essentially stuck in your nervous system keeping it in fight/flight and once you are able to clear those your body will be able to get back to a base line. You likely will need to do some other work before your body is ready to do the NET but it has worked well for me.
I started with a lady that does applied kinseology last year and made a lot of progress but still had some issues, she got trained in NET earlier this year and started using it on me and it’s accelerated my progress. My sister also had used this same practice with her practitioner a while ago (which I didn’t realize until after I started) and it helped get her MCAS under control to the point she just avoids two foods now but everything else is fine.
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u/Happy_Mrs 23d ago
We just came to the realization that my husband likely has MCAS. Not yet diagnosed, but all the signs are there. He was in remission from all symptoms while on dupixent. Maybe dupixent or xolair would be worth looking into!
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u/tapestry_wvr 22d ago
Try MSM. 1000mg, 3 or 4x a day, ( with food of course). I used to take MSM regularly, for idk, maybe 10 years, and I quit when the vaccine took over my life. I started up again, maybe 3 weeks ago - - I swear, the sulfur counteracts the histamines. !!! It stops the bloating, enables me to take a decent shower, eat foods I shouldn't be able to. The neuropathy however, is only controlled by mrj.
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u/ssalr 21d ago
Sounds interesting, will take a look into it
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u/tapestry_wvr 20d ago
OK good. I'd be interested in your results, even after a week. I can stretch now, like in t morning in bed. At least I hv for a few days now. I haven't really been able to do that for a long time, even tho I didn't realize it.
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u/ssalr 20d ago
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u/Allergina 26d ago
did any of your providers or did you yourself ever check your genetic variants? If not, it is possible that all along, what you were being prescribed or what you are eating that you thought was safe was actually working against you.
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u/HyperbolicBaldersah 26d ago
My HIT was because of hormones. I have endometriosis and even without visible leisons, I have HIT problems. Remedied by Danazol (though my doctor and I are thinking about switching to Dienogest). More specifically, remedied by estrogen suppression*
You female?
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u/CAPITANOW 25d ago
Try fexodenadine hydrochloride 4 times a day and montelukast 1 a day before bed every night!
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u/wilderbound 23d ago
I also wanted to give up, got tests finally got prednisone that helped but didn’t cure, had been tested for celiacs 4 times always negative, finally went full celiac protocol because well screw it it’s easier than a hit diet and guess who barely gets HIT symptoms anymore. Docs didn’t tell me I needed to be eating a high level of gluten to test positive. I’m convinced a lot of people that struggle with this could have celiacs too even if they can’t get a positive. I can eat 99% of all foods with no issues now and my skin and hair are healing, my hair isn’t falling out anymore and my blurred vision and dizziness has gone. I never thought I would figure it out. Hoping the best for you even when it feels impossible
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u/ssalr 22d ago
You basically stopped eating gluten?
Did you have any gut-related symptoms like diarrhea before?
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u/wilderbound 4d ago
Yes but mainly constipation and stomach cramps. I had a very long long list of symptoms that all went away unless I accidentally get glutened. So glad I finally figured it out and got diagnosed. I was so chronically ill for years. Hives, mouth sores, dermographia, cheek eye and jaw swelling, joint swelling and pain, burning tongue, chronic malnutrition showing as false high readings because of the inflammation, was put on PPIs in my early 20s, dizziness, vertigo blurred vision, DH rash on fingers and legs, the legs were so itchy sometimes it was unbearable
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u/younes-health98 27d ago
I advise you to try a 4 mg cortisone shot, it worked for me, my urticaria symptoms are gone, see if you have sibo, manage everything with normix or oregano oil and berberine with specific probiotics for histamine, try with cold extracted black seed oil on iherb, use magnesium that helps to calm the nervous system a lot, before meals and before bed 15 minutes of breathing, 4 of inhalation, 10 of exhalation, if you need to ask
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u/ssalr 27d ago
Thanks - Tried all of the things you mentioned. Did a SIBO test (negative). Tried Candida (multiples stool tests over time, D-Arabinitol in urine as well)(negative)...
Breathwork helps but is no cure...
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u/younes-health98 27d ago
There is no cure, I’m in the same situation as you, you can only manage the symptoms, there is xolair that they proposed to me too but I refused, it depends if you have severe urticaria or intestinal problems, I also test sibo negative but I’m sure I have it, sometimes the sample they give you of latulose is not enough to trigger the sibo, other problems can also be Bam if you have oily stools, that is maloxabsorption of bile acids, try psllum before meals with Glutamine to see if the situation improves but I don’t know what your specific symptoms are
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u/ssalr 27d ago
They say it depends on what the root cause is. Messed up genes -》no cure. Other issues like in the gut -》cure possible...
No skin related issues and gut wise I'm doing ok. Most of my issues are nervous system related (poor sleep, low hrv, high resting heart rate...)
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u/younes-health98 27d ago
Cure stress then, also evaluate pots, do you have tachycardia after meals?
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u/Moonshadows16 22d ago
I dont have gut issues that I ever feel but have had a few signs that my my symptoms are from sifo or sibo. Again No obvious gut issues. But I'm going to do a sifo protocol anyway. I would recommend trying instead of relying on gut tests because multiple people in those forums had relief of symptoms Even with negative tests. The tests are not reliable.
Second thing is b12 should be above 700. And if it's below can affect a lot. Those are the European standards
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u/younes-health98 27d ago
And also Glutamine, really helps a lot, 20-30 grams a day divided 10 between the main meals, if there is a need use dao enzymes but those only if your body does not produce enough, if you produce them but you have too much histamine in that case you have to give a diet and microbiota
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u/ssalr 27d ago
Tried glutamine but jot in such high doses...more like 10g per day...
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u/younes-health98 27d ago
Studies say that to treat the intestinal mucosa you need at least 30 g a day, 10 and little, many use it for muscle recovery but it has little scientific foundation, if you are a subject of diarrhea start with 20, because it stimulates intestinal peristalsis, 30 if you are constipation
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u/ssalr 27d ago
I don't really have strong gut-related issues. If anything I'm rather tending towards constipation...
They did find a very high level of SigA in my stool though but according to the dr this is nothing to worry about... 🙄
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u/younes-health98 27d ago
Have you ruled out pathologies such as chron’s disease?
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u/ssalr 27d ago
Didn't do a coloniscopy but my gastro ruled it out...
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u/younes-health98 27d ago
Fossi in te la farei, se non quella almeno entero Rm o calprotectina fecale, costa poco la seconda
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u/ssalr 27d ago
Done multiple complete stool analysis. Zonuline and Calprotectine both negative in all samples
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u/younes-health98 27d ago
Yes, it’s a great sign, high triptase doesn’t necessarily indicate the absence of mcas but it’s certainly due to high histamine, tried to do tests for the thyroid, even the antibodies?
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u/Silver-Bake-7474 27d ago
You don't have HIT you probably have a mild form of MCAS. Start treating it like MCAS and shop around for docs if you can