Long COVID with MCAS and food sensitivities, much better after diet and vagal training
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3.5 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I had Covid in Sept 2022 and then I've had LC/MCAS symptoms since Jan 2023
In context ↗ - At worst: Moderate
I live a bit like a hermit to avoid my triggers.
In context ↗ - Now: Much better
Slowly over time it’s settled down. I can work out for a while. Or eat a few foods that contain more histamine.
In context ↗ - Began after: COVID
I had Covid in Sept 2022 and then I've had LC/MCAS symptoms since Jan 2023.
In context ↗
Summary
After COVID in September 2022, a Reddit user had long COVID with MCAS symptoms from January 2023, worsening in May 2025 with hypersensitivity to most foods, dander and pollen. Allergists put them on antihistamines, cromolyn, quercetin and a low-histamine diet, and through clean eating and avoiding triggers they healed their gut. With vagal nerve training and the medications they saw real progress after about nine months and could exercise again, though flares still caused insomnia.
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What they tried
What they credit
Also tried
Their words about each treatment
- Cetirizine/Zyrtec · Helped
H1 - Cetirizine/Zyrtec up to 4 25 mg daily - these really help me to sleep.
In context ↗ - Hydroxyzine · Helped
Hydroxyzine - 25 mg nightly for sleep ... I use these every day and have been on them for over a year.
In context ↗ - Diphenhydramine · Not said
put me on the standard H1, H2, low-histamine diet, DAO, Quercitin, Vit C, Cromolyn, Diphenhydramine, Hydroxyzine, and Doxepin
In context ↗ - Famitidine/Pepcid · Helped
H2 - Famitidine/Pepcid 3 10mg daily ... Started to see real progress after about 9 months or so.
In context ↗ - low-histamine diet / clean eating · Helped
Through clean eating and avoiding triggers and high histamine foods I have completely healed my gut.
In context ↗ - DAO · Not said
put me on the standard H1, H2, low-histamine diet, DAO, Quercitin, Vit C, Cromolyn
In context ↗ - Quercetin · Helped
Quercetin - 500 mg 4 times a day ... Started to see real progress after about 9 months or so.
In context ↗ - Cromolyn Sodium · Helped
Cromolyn Sodium - 2 5 ml vials 4 times a day ... Started to see real progress after about 9 months or so.
In context ↗ - Ketotifen · Worse
I tried Ketotifen and Xolair but couldn't tolerate them.
In context ↗ - Rhapsido · Helped a lot
And more recently I was put on Rhapsido which helps tremendously with itching.
In context ↗ - Vitamin C · Helped
Vitamin C ... I use these every day and have been on them for over a year.
In context ↗ - Vitamin D · Helped
Vitamin D ... I use these every day and have been on them for over a year.
In context ↗ - Doxepin (Doxipen) · Helped
Doxipen - 3-10 mg nightly for sleep ... Started to see real progress after about 9 months or so.
In context ↗ - Vagal nerve training (deep breathing, ice packs, cold washcloths) · Helped
What worked for me was serious Vagal nerve training - deep breathing, ice packs, cold wash clothes.
In context ↗ - Avoiding triggers (dog dander, pollen) · Helped
I avoid my triggers including limiting visits with my sons who both own dogs
In context ↗
Approaches: H1 antihistamines · H2 blockers · Antihistamines & MCAS · Diet · Supplements · Tricyclic antidepressants · Vagus nerve stimulation
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 2.7 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2022 | COVID-19 infection, long COVID/MCAS symptoms from January 2023I had Covid in Sept 2022 and then I've had LC/MCAS symptoms since Jan 2023.In context ↗ | Not stated | |
| May 2025 | Became hypersensitive to most foods, dog dander and pollenThen last May 2025 all heck broke loose as I became hyper sensitive to most foods, dog dander and ragweed/pollenIn context ↗ | Moderate | |
| early 2026 | Real progress after about nine months of MCAS medications and vagal nerve training; gut healedStarted to see real progress after about 9 months or so.In context ↗ | Mild | Vagus nerve stimulation |
| September 2026 | Could exercise for a while and eat some higher-histamine foods; still avoiding triggersSlowly over time it’s settled down. I can work out for a while.In context ↗ | Mild |
Adverse events
- Ketotifen (Zaditen)“I tried Ketotifen and Xolair but couldn't tolerate them.” In context ↗ Side effects
- Omalizumab / Xolair“I tried Ketotifen and Xolair but couldn't tolerate them.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Even a walk could cause those nighttime symptoms.
In context ↗ - Sleep problems
long-lasting insomnia with moderate itching that leaves me wiped out the next day
In context ↗ - Mast cell (MCAS) & allergies
I've had LC/MCAS symptoms since Jan 2023
In context ↗ - Gut problems
My original symptoms were gut issues
In context ↗ - Heart symptoms & palpitations
severe heart pounding with flares at night causing severe insomnia
In context ↗
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