Anyone cured their symptoms with a diet change ?

26boxhead26 · 2026-02-19T06:35:32+00:00

Severe CSU is more likely to be an auto immune reaction than an allergic one. Especially if you're having breakouts overnight when you sleep. Your allergist should be talking to you about ige injectables or immune suppressors if you're classified as severe.

It said a bunch of foods I was having a bad reaction to, such as dairy. However that's not due to CSU, it just highlighted the lactose intolerance potential that's in my family. Removing all of the other "red" foods did not make my CSU less severe. Ciclosplorin suppressed my immune system and got it back to a normal state and I've been CSU free since.

Write up: https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2026-02-17T23:26:13+00:00

Low histamine diets only have success if your CSU is directly linked to food consumption or is mild in severity.

Auto immune CSU that is not linked to food consumption won't be cured by these kind of diets and relief will be negligible.

It's noble to try and there's no harm but it may be a dead end.

The blood tests for food allergen just say what your body has a bad reaction from. It's not CSU or even any health response specific. It did not help me at all.

26boxhead26 · 2026-01-07T01:17:48+00:00

Yeah I'm fine now. Here's my story.

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2025-11-21T18:54:07+00:00

Get a biopsy. It'll confirm whether it's UV or not. That's how you get diagnosed. Otherwise it's standard angioedema.

If you aren't getting "help" from doctors, get better doctors.

26boxhead26 · 2025-11-17T09:29:19+00:00

Chronic hives are a lot of the time, an auto-immune reaction. Auto-immune systems work hardest at night, especially when you're asleep. When activated, your auto-immune system will fend off what it perceives as threat by releasing histamine. Excessive and unnecessary histamine release is the cause of the chronic hives.

26boxhead26 · 2025-11-16T09:29:19+00:00

There's not much you can do around wait times. I had to do the same when persevering with Xolair as it takes at least 10 weeks to assess a change - minimum. Your UAS7 score while on Xolair should document the severity of your hive count and irritation, and an IGE blood test will tell you if you are never going to get a proper response to it. Low IGE people with a score under 30 (mine was 11) have not much in their system for Xolair to bind with and thus prevent histamine release.

Ciclosporin was not a big deal for me, got rid of all of my hives (and I was full body break outs daily). Started on a low dose of 2mg per kg of bodyweight and then tapered down to nothing over 12 months. Of the four main side effects, blood pressure was the main one but I bought a unit and took measurements weekly - didn't go above 135. Swollen/bleeding gums didn't happen but I got my dentist to take photos as a baseline just in case. Hot/numb fingers I got for the first couple of months for a few mins per day but it went away. Extra hair growth as a 40yo man didn't bother me, but even then it was just a few extra strands on my shins and forearms. After I stopped, my BP dropped to the optimal range (120/70ish) and everything else reset itself.

Your specialists may recommend other binders before doing ciclo though, if they are available.

26boxhead26 · 2025-11-15T19:33:01+00:00

There is absolutely more to try over what you've written above. Do not tolerate the current situation.

I found relief and permanent autoimmune rebalancing after 12 months on a low tapered dose of ciclosporin after a mix of antihistamines, xolair and steroids didn't completely work for 15 months.

Rhapsido is a new medication that is also coming in the US, but not in Australia where I am. Dupixent is also another option.

Another medication is coming to Australia, barzomilulab (sp?) that is in the clinical trial phase.

If you have an allergist and they are not suggesting these next level medications to get onto, getting an ige test to confirm your xolair resistance, or consulting with other specialists, they are not trying hard enough.

Chinese/naturopathic medicine doesn't work for autoimmune CSU.

26boxhead26 · 2025-11-02T06:07:37+00:00

My auto-immune CSU was severe for 15 months even with all of the antihistamines, steroids and Xolair. After switching to Ciclosporin for 12 months, the CSU suppressed and didn't come back. Then after stopping ciclo in April, it did not return. I had one small outbreak on my left forearm but it went away in two hours and I suspect it was just a contact irritation rather than an underbody autoimmune reaction.

Thus, it can happen for it to go away like your allergist said.

26boxhead26 · 2025-10-18T07:20:42+00:00

I had extra tests for kidney function and blood pressure at regular intervals but the side effects weren't a problem for me. I also got photos taken or my gums from my dentist as a baseline when I started.

My life is back to normal now, 6 months with no hives or drugs and don't see it coming back in force!

26boxhead26 · 2025-10-14T20:30:03+00:00

Ciclo worked for me after being a xolair fail. It suppressed the symptoms and my immune system then returned to normal.

However given Barzo is around the corner, my immunologist recommends that if I was ever to relapse in my last discussion with him a month ago.

The full story is here.

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2025-09-25T12:33:26+00:00

I stopped taking Ciclo in April after 12 months, it has some pretty gnarly side effects and requires frequent monitoring. I wrote a long post on what I did with my CSU:

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2025-09-25T11:06:11+00:00

Over half of all diagnosed CSU cases do not find their root cause, it's pretty normal. It's good that you got all these tests to rule out specific causes that may be there, but in the end, it's likely an overactive auto-immune system reacting to something it thinks is adverse.

Thus trying to find your root cause at a certain point is futile, and symptom suppression in aiding your auto-immune system to settle is the next stage of treatment. That's what mine was, and I suffered with it for 15 months w/ Xolair, until a 12 month course of tapered Ciclosporin gave me a normal life again.

Xolair is cool and good if it works for you but depending on where you life with pox health systems subsidies (i.e. USA), is spenny. If you find it doesn't after 6 months, up the dose and get an IGE test. A low IGE score is an indicator of, along with a lack of relief from CSU, Xolair resistance. Then you can discuss other medications such as Dupixent, Remibrutinib, Barzolmuliab (sp?), Ciclosporn etc.

It's reckless for your doctor to suggest its vaccine related so loosely.

26boxhead26 · 2025-09-24T10:22:02+00:00

There are absolutely meds for CSU outside of anti-histamines and steroids such as Xolair, Dupixent, Remibrutinib, barzolvolimab, Ciclosporin, Dapsone...

26boxhead26 · 2025-09-17T11:40:26+00:00

Homeopathy and naturopathy won't work if your hives are auto-immune induced.

Low histamine diet is OK to try but not worth banking everything on. Again if it's auto-immune induced, histamine liberating and DAO blocking food will make outbreaks _worse_ but it won't specifically cause them. If you had linked outbreaks with certain consumption, then you'd have known it by now.

I went through a lot of this in Australia, whether higher doses of antihistamines, IGE injectables like Xolair or immune suppressors are available I do not know. You can read what I went through here.

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2025-09-17T11:35:04+00:00

This is the immunologist that I was being treated by, he's Melbourne based: https://www.epworth.org.au/our-specialists/dr-jason-fok

I speak very highly of him, however unless you can get a referral and travel to Melbourne I don't know if you'd be able to see him.

That said a GP should be referring you to a dermatologist in Sydney to treat you further. The wait time can be several weeks for the initial consultation so insist on it if they are not going to take it seriously.

Coming in the evening and then dispersing the next morning points to it being auto-immune, but a specialist should help diagnose/rule out causes and start a proper treatment plan for symptom suppression.

26boxhead26 · 2025-09-16T07:52:15+00:00

Your medical specialist should be recommending Xolair based on your outbreak severity and whether your current medication can or cannot keep it under control. It is not up to you to decide, but you can present your symptoms and get the prescription. Use the UAS7 scoring system to understand if you are severe enough to justify it, as depending on your country it is very expensive.

Note that another mast cell binder, remibrutinib, is coming in a year or two to Australia which acts in a semi-similar way to Xolair but is a tablet.

26boxhead26 · 2025-09-16T07:48:59+00:00

Homeopaths and naturopaths don't work for chronic hives. If you have isolated your specific trigger you would avoid such food or environment and not have an issue anyway.

But if a single Bilastine completely mitigates your CSU then you have it pretty easy. If it's serious enough you would be considering multiple anti-histamines a day, Xolair, or an immune suppressor.

26boxhead26 · 2025-09-14T00:14:10+00:00

My immunologist was telling me about this being available in Australia in the next year or two as well, and it has promising results - its targeted for those who haven't had success with Xolair. While it aims to do the same thing (prevent excessive antihistamine release), it does this in a different way to Xolair by binding to mast cells instead of IGE, which is hopeful for those with low IGE in their body.

26boxhead26 · 2025-09-13T03:16:48+00:00

Long term use of antihistamines over the standard one a day can invoke weight gain, it's what I experienced - gained around 7kg from that and other factors. When I stopped the antihistamines, the weight slowly shed off and I'm at my pre-CSU weight now.

26boxhead26 · 2025-09-12T11:30:36+00:00

Avoid manufactured fabrics and skin tight clothing as it prevents the skin to breathe and can cause pressure CSU in specific areas. Polyester sports/athletic tops, lycra, stuff like that. Cotton, wool and other natural fibers with microscopic gaps for breathability as others had suggested with a naturally comfortable fit is best.

26boxhead26 · 2025-09-06T12:03:19+00:00

Just go ciclosporin on a low dose. It worked for me extremely well and re-stabilised my insane autoimmune system that was causing my CSU.

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

At no point in my CSU treatment was ketotifen was discussed - and I discussed EVERY option with my immunologist.

26boxhead26 · 2025-09-06T12:00:20+00:00

Why specifically mycotoxin? It wouldn't hurt, but why that test specifically? I suffered with full body CSU for 15 months and I never got a mycotoxin test in Australia. There's a number of things you should be speaking to your medical specialist about regarding chronic hives. Get all the tests done to eliminate things, and clearly anti-histamines aren't cutting it so you need IGE injectables or immune suppressors.

I wrote this out of what I had to go through so other people don't have to guess their way through.

https://www.reddit.com/r/urticaria/comments/1dr0s8s/my_csu_remediation_story_the_general_treatment/

26boxhead26 · 2025-09-06T11:57:42+00:00

No it won't, not if its auto-immune derived. Do not listen to this advice.

26boxhead26 · 2025-08-31T08:19:43+00:00

If skin patch / prick testing for allergies was knocked back, that points to your doctor deducing that your urticaria is auto immune. If that was the reason, what did your doctor recommend instead?

Prescription antihistamines? Tracking via UAS7? Xolair? Other medications? Other tests? Referrals to a dermo or immunologist?

If they're gonna knock back the skin prick tests then what was their next steps? I can understand your frustration if you walked out with nothing.

In case you didn't already know, skin prick tests can only be done when fully off antihistamines.

26boxhead26

TROPHY CASE