Hoping this helps someone and that I can get some advice in return.
I’ve had symptoms my whole life — respiratory issues at 3, random hive reactions, teenage skin/gut issues, constant fatigue, itchy eyes, blocked nose, overheating, and severe reactions to alcohol and caffeine that left me bedridden for days. I dismissed most of it as normal or a mystery genetic condition that my family suffered from.
In 2020 I returned from Malaysia just before COVID and everything flared badly — severe eye itching, gut pain, nausea, acid reflux, exhaustion. A gastroenterologist dismissed it as psychological (H. pylori negative, parasites negative), suggested antidepressants and hypnotherapy, and eventually just put me on PPIs. Endoscopy showed an inflamed oesophagus but no answers.
Five weeks ago after finding this community I started a low histamine diet and the results have been significant — brain fog (which I thought was just “me”) mostly gone, nose cleared, ears unblocked, temperature regulation improved, less anxiety, acid reflux dramatically better. Although I do believe there’s still a long way to go.
New challenges have emerged though. My smell sensitivity is now extreme — I can detect cologne from 20–30 metres away. Walking into a bar feels like a gas chamber and leaves me with headaches, acid reflux, and a 3-day hangover feeling despite only drinking water. Heat and exercise are also triggers.
I suspect MCAS as self-assessments for hEDS and POTS both came back probable (my mum and sister too, my sister has had frequent unexplained anaphylaxis). Working on getting proper diagnoses, currently unmedicated and managing through diet alone.
Main questions: How do you survive this phase? The diet is manageable, but chemical/scent sensitivity makes socialising and going to work feel almost impossible. And for those who’ve experienced this — did the smell sensitivity ease over time, and if so, how long did it take?