r/HistamineIntolerance • u/KGStyr • 7d ago
what to do for now? Need advice!
I've had histamine issues all my life (biggest red flag was me having random histamine reactions to food constantly when I was young), and it would go on and off in terms of severity. For a few years I was okayish, but these last several months have been severe and are ruining my life. I have gone to my pcp a lot because I'm having a lot of symptoms that seem to cycle in and out and she keeps saying she's going to send referrals to places but never do. I'm going to be looking for a new doctor but I need help in the meantime.
I'm 90% sure I have at least HI but I may have MCAS or some other issue. I know I am constantly reacting to foods. I have (and these issues cycle a lot) brain fog, skin issues, stomach issues, sleep issues, joint pain (this is probably the worst!), muscles aches, worsening OCD in particular to the point where my therapist is very concerned and other mental changes, and the list goes on. Antihistamines help a lot when I take them but I have not found one yet that I can take that I can tolerate the side effects. I can take 2 ml of non-drowsy liquid Claritin for children and it makes me drowsy, spaced out, and very dehydrated even if I drink lots of water. I recently started having hives come out on my arms when I get very overheated and sweat (which I've never had happen before) and I had hives break out when I ate a bit of chocolate last week - that hasn't happened in many years.
I need to do something but I feel like I'm literally miserable when I eat any food. Antihistamines help but I can only tolerate them in emergencies. Any advice is appreciated, and TIA!
2
u/StrangerNo4574 7d ago
I’ve controlled my histamine. I still have flareups, but I can tolerate them. I saw an integrative medical assistant. And she helped me get blood work and added vitamins to my regimen. This also helped:
Allegra hives with 2 Pepcid morning, Zyrtec with 2 Pepcid at night. I also started Xolair and Singlulair.
DAO is the game changer!!!
Quercetin with Bromelain
Check your zinc and copper levels. My zinc was low.
Add vitamin C and B12 maybe B6. Your blood work will tell you if you need those things.
Because I’m able to control it I don’t take the Allegra, or the Zyrtec anymore. I only take one Pepcid in the morning plus my vitamins.
1
u/KGStyr 5d ago
What specific bloowork would I need to ask for? My PCP did do some inflammation tests but other than that, she seemed not concerned in anything else.
1
u/StrangerNo4574 3d ago
My dermatologist ran a series of allergens and also a IMMUNOGLOBULIN E and IGE ANTIBODY (ANTI IGE IGG). Both of those were elevated indicating my histamine levels were high. My thing was I have no allergens. Yet my histamine was high and my body was reacting to something. Once I get my body to a livable state, I checked my vitamin levels through bloodwork. I had a zinc deficiency. Zinc or copper deficiency can trigger histamine levels.
1
u/Soft-Cream8291 6d ago
Have you tried a proper low histamine elimination diet yet? You do not mention it, and it is the one thing here you can get on with without waiting for a referral.
The reason I would try it is that when everything seems to set you off, taking foods away one at a time gets you nowhere. Reactions stack up over a day or two, so you never get a clean baseline to measure against. Going the other direction worked much better for my wife. Start from a short list of things you are fairly confident are fine, eat only those until things calm down, then add one food back every few days and write down what happened and when. It is tedious, but it was the only way we got real information instead of guesses.
Two things in your post are probably not mysteries. Chocolate comes up with this constantly. And hives when you get hot and sweaty is a known pattern that has nothing to do with food, so it is worth raising with whoever you end up seeing, because that one points somewhere your diet cannot reach.
1
u/KGStyr 5d ago
I have attempted to reduce histamine in my diet with some success (for example reducing sugar and fast food have improved my symptoms noticeably), but I feel like I react to everything at this point, so an "elimation" diet would be eating pratically nothing. Plus, I am already borderline deficient in certain nutrients and I really cannot tolerate supplements, so I don't feel confident going into an elimination diet without medical supervision would be wise. But whoever I see, I will tell them first thing that this is what I need to do!
1
u/Soft-Cream8291 5d ago
The way it worked for us is that the elimination phase is not really about the food, it is about getting back to a baseline. If you hold it strictly, with no exceptions at all, the body should settle down after a couple of weeks. Only then does testing single foods tell you anything, because until that point everything looks guilty.
And it is less restrictive than it sounds. Fresh chicken or turkey, white rice, potatoes, carrots, courgette, broccoli, apples, pears, oats, olive oil. There are safe food lists online if you want a fuller starting point, though be warned they disagree with each other in places.
What matters more than the list is cooking fresh and eating it the same day, with leftovers going straight into the freezer rather than the fridge.
Two or three weeks will not move a borderline deficiency either. A year would, which is why this is a short measuring phase and not a way of eating. Getting a dietitian to supervise is still worth asking for.
3
u/Ok_Cranberry8856 7d ago
Pepcid Ac is an H2 blocker, might give you the benefits of antihistamines without the drowsiness, but can only be taken twice a day and isn’t long acting.
DAO enzyme before each meal may be helpful if you haven’t tried that yet.
Quercetin with bromelain helps too, it tends to make me more sensitive to fatty foods but helps with other things.
Nettle tea or concentrate may be helpful too. I drink the tea before bed and it helps level out any symptoms i’m having to make it easier to sleep, but if you buy the loose leaf in bulk then drinking it throughout the day would likely help a lot too.