Update April 2023, Immunology consultant finally now confirmed what I have is probably mast cell related. it has taken me 6 years of doing my research and pushing for help even when I've been gaslighted to get to this point.
Warning: long post but worth reading. I wanted to write a bit more about histamine intolerance (HIT) which I’ve discovered I have, as I think from what I’ve read over the years many people on here might well have it too and not realise what's happening. See also my posts on bladder problems, again, common with autoimmune things like PMR, which I also found were due to histamine issues and largely solved using H2 blockers eg Cimetidine.
It’s a very complex area and although I’ve read a lot over the last few years this is only a brief overview. The following can all be signs of histamine intolerance or even Mast Cell Activation Syndrome (MCAS) or mastocytosis, all part of the same broad spectrum. All reactions involve triggering Mast cells in different parts of the body:
Rashes and hives, itching, flushes, headaches/migraines, brain fog, fatigue, nasal problems, swelling and bloating in any part of the body, restless legs, tingly lips, digestive problems, GERD and reflux, menstrual pain and problems, sleep problems, depression and anxiety, allergic type reactions ocluding lymph-node swelling to some foods and drink especially alcohol and tea/coffee, reactions to medications (its the fillers and coatings), reactions to the sun and cold and changes in temperature, chest pains, palpitations, respiratory problems, bladder problems, bone pain.
It’s complicated, but basically symptoms can be brought on by foods that are high histamine, or for some can be triggered by changes in temperature or physical exertion/exercise and also things in the air like chemicals.
The first thing to do if you think you might have this is to keep a detailed diary of what you eat/drink and any symptoms and reactions that followed either immediately or even hours later. My investigations started by realising wine made me feel very ill, so I looked up what might be in wine to cause that and discovered it's high histamine. Other things that made me ill also turned out to be high in histamine so I thought I might be on to something.
Next is to try a short histamine elimination diet for say 4-6 weeks. You will need to find a list of foods and their histamine levels, you can Google histamine intolerance, the most comprehensive out there is the Swiss SIGHI list. The most common triggers are alcohol, fermented things eg yoghurt, mature cheese eg cheddar, tomatoes, pickled things. I lived on rice, potatoes, oats, milk, cream cheese, loads of veg (except avocado, tomatoes and spinach) and meat that had not been processed or had food additives eg chicken, beef but not bacon etc, for about 2 months.
I found that alcohol, particulary wine, some types of nuts, dried fruit and malt (eg raisins, mince pies, Christmas pudding), tomatoes, tinned tuna and other tinned things, smoked mackerel, cured ham, bacon, strong cheese like cheddar, pickled and vinegary things and worst for me to give up – tea (I had to switch to decaf tea) all caused flares of the type mentioned above. Also paracetamol and ibuprofen and environmental things like perfume, detergents, chemicals, detergents, pollen, glossy paper, old books etc etc triggered me. I have to be very careful to avoid these triggers and have switched to low odour products and wear a dust mask to read magazines!
Having gone without these things for a few months I felt LOADS better. The fatigue and brain fog that blighted my life for years has largely gone. The the pain and swelling in the face and neck that had baffled doctors, or the pains and palpitations in my chest which I’ve had asthma tests and chest x-rays and ecgs for and have shown nothing mainly went.
It is still a bit hit and miss what I can tolerate. I can eat more thing later in the day whten the steroids and H2 blockers have kicked in as they also reduce reactions. My reactions only came to light when I was reducing steroids on got to a low dose, and then wehn I had a flare and had to increase the dose all disapeared again.
It’s interesting that I know people who have different autoimmune illnesses eg, PMR, arthritis and so often we all have the same problems. I’m wondering if it is something that goes along with having an AI illness as inflammation increases histamine and could also be due to mast cell issues.
There’s loads of info on the internet about histamine intolerance and mast cell activation including support groups on Facebook, though few GPs have heard of it and there are very few specialists in it so it’s very hard to diagnose. Same story as trying to get a diagnosis for PMR - as it crops up in clinics for allergies, immunology, haematology, gastroenterology even psychiatry with the links to anxiety and depression but as these departments rarely talk to each other nobody joins the dots connecting everything together. Many people are told its ‘all in their head’ and dismissed, (technically it is, as histamine is a neurotransmitter which affects the brain but that’s not what they mean). Neither my GP or rheumy had heard of it.
This is a brief summary of what I’ve learned so far. I’m continuing to research, but the low histamine diet seems to be working very well, I hardly ever have to use antihistamines or Ranitidine which I was having to take daily I think I’ve had this for a long time, but for years when I was on Pred it acts as a mast cell stabiliser so I didn’t notice the symptoms until on a dose below 5, which is one of the reasons why I always immediately felt so ill when trying to reduce below 5.
Hope this helps. Like I say, if you have strange reactions to food and environmental triggers symptoms it might be worth keeping a diary log of symptoms and seeing if there is any correlation and if there is, trying a histamine elimination diet for a while. Don’t expect your doctor to have heard of it though, they were never taught all this at Med school and there isn’t much info on NHS websites either. The Swiss and Germans and Canadians and Australians are way ahead of us. A useful website for starters: healinghistamine.com/10-sig...
PMR and Chronic Spontaneous Urticaria with Angioedema
New Year, old me??🤞
