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...
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tangocharlie
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For anyone who wants to learn about histamine intolerance, the best book I have found is ‘A beginner’s guide to histamine intolerance ‘ by Dr Janice Joneja, who is a Canadian world authority
I agree, I've got that and her guide for professionals. Dr Tania Dempsey based in New York is another great and helpful authority. Do you have HIT Mary63? I definitely have it and wonder if I have MCAS. There seems to be about 20 things that can cause HIT and MCAS and I'm a bit overwhelmed by all the info and trying to figure things out, I'm hoping my rheumatologist might know something but not holding my breath ....
Do you mean PMR and HIT? All the HIT symptoms started to show when I came off Pred a few years ago, so I don't know if there is a connection, if the Pred had been keeping it at bay or whether it's just coincidence. When I take steroids occasionally if my PMR flares up again I can eat and drink what I want without reactions. The inflammation seems to come and go, whatever it is due to. Oh it's so complicated trying to fathom this out when Doctors haven't a clue what's going on. I really don't want to back on a high dose of Pred (starting on 15 and tapering which would be nearly a year back on) as the rheumy suggests.
Yes, I'm fairly certain I have.. Food I used to enjoy exacerbates the urticaria I've had since being prescribed a beta blocker, Bisoprolol, which I was taken off by a GP who specialises in skin problems. I'm seeing her again next week as I've noticed that certain foods, in my case granary bread, red wine, blue Stilton cheese and tomatoes, as well as heat make the rashes worse and more itchy and painful. I no longer have PMR, but do have permanent atrial fibrillation, Asthma and below knee lymphoedema.. These three conditions are not a problem but the urticaria is.
Those foods you mention are all high histamine and cause reactions for me, and I also have lymphoedema on lower legs and feet. There are many things that cause histamine intolerance, including mast cell activation disorder/syndrome (MCAS). Hope you get somewhere with discussions with your GP but I doubt they've heard of histamine intolerance or MCAS. I'm going to ask for a referral to a dermatologist.
I have had PMR since September 2014. I was diagnosed with Histaminosis (Histamine Intolerance) by a Functional GP (Private) last summer. Since then I have had to give up all the foods you mention which has helped tremendously. They unfortunately happened to be all my facourite foods. Extremes of temperature I find very difficult. I found it very difficult to breathe during the very hot weather we had last summer and could not go out at all.
Has your Diamine Oxidase (DAO) level been checked ?
I take a DAO supplement before lunch and dinner daily. I also take a special probiotic which has the friendly bacteria for Histaminosis.
It also is apparently the reason why I have had extreme reactions to certain medications on the list.
I have read everything on the internet, bought several books and been told by a specialist dietitian at Guys Hospital, that I know as much as she does about it. I am now in the process of trial and error to see if there are some foods I can cope with in small amounts from time to time.
Interesting NursePeggy, thanks for the info. I asked my GP about gettiing my DAO levels checked but she had no idea about it, it doesn't exist on the NHS pathway. Where did you get that test done please? I've pretty much sorted the digestion problems anyway by following a low histamine diet, though I do have to take the occasional Ranitidine which is a H2 blocker and I think mast cell stabiliser and also Bromelain supplements. The main triggers now are exertion/exercise, smells and chemicals and changes in the temperature so I've a feeling it's something to do with mast cells.
I just replied to this, but must have deleted it by mistake. Hey ho thats life at the moment.
I had my DAO bloods done by the private functional doc. My Daosin level came out very low. Had it repeated 8 months later and it was exactly the same. I also had the Tryptase checked for Mast Cell problems and rhat one came back normal. (I think it was tryptase, but have mislaid the file. Will check when I find it)
My func doc got that wrong then. I shall have to read up more about that. It is not good that we have to do so much research for ourselves. I find it very stressful.
I've been trying to find a probiotic that's suitable for HIT, I tried some but they made my digestion worse, which ones work for you? What strains are good do you know? Many medications make me ill including even painkillers, so now there is nothing I can take when I get bad headaches from reactions. Interesting I had bad reactions to methotrexate and flu jabs in the past and wonder if there's a connection?
Hi tangocharlie. I am sorry I havent replied sooner, have been going through a bad patch.
I found a probiotic with all the right bacteria called ProBiota HistaminX and its made by Seeking Health. There is a distributor in the Uk but you can find it on Amazon.
I also take a diamine oxidase supplement called Daosin. None of these are, of course, cheap !
I also have problems with medications and have had bad reactions to quite a few. I am very wary of going on anything new, even a different brand to a med that I am already taking. There are usually different additives in different brands.
Sorry to hear you're goign through a bad patch, hope things improve soon. Thanks very much for the info I will investigate. The problem is all I know is that I have HIT, but that can be caused by many things, including inflammation from AI illnesses. I saw this bargain offer via a post on Facebook so might give it a try: umbrelluxdao.myshopify.com/...
PS Yes I'm in the UK. At the moment I'm avoiding anything with high histamine and as a result my symptoms have really calmed down, but other random things set me off eg a bunch of flowers, smells from washing powder in a friends house etc. I only take ranitidine a couple of times a week if my guts flare. My GP has given me fexofenadine which I take if I have a strong reaction to a food or something airborne. I'm kind of reluctant to add in anything new in case it makes things worse, I think Quercetin makes things worse. My GP hasn't a clue about what's going on so am having to fathom things out for myself. I don't think we have functional doctors in UK but I'll Google it.
I also am in the Uk and have seen a functional doctor. She diagnosed me with HIT, but there are not many of them around. Unexpectedly my cardiologist knows more about HIT than my normal GP. If you would like to know where my func doc is I could Private Message you with the info.
The problem is that noone knows very much about it yet, so we are searching the internet for anythIng we can find to help us. Some of the symptoms are also side effects of the various meds I am on, so I find it difficult to work out what is causing them !
I was advised not to take Quercetin by a dietitian, but I do carry an antihistamine with me.
Could you let us know how you get on with the immunologist. My gastroenterologist said he wondered if I should see one after an endoscopy last year, but didnt follow up on it. I am not on Facebook so not sure if I can see their comments.
I don't know if it is true, but there are alternative practitioners who say that when you crave or particularly like certain foods that may be a sign you shouldn't be eating them!
Didn't notice this originally - if you reply to the original post on the thread it doesn't say who it is to, If you are replying to a particular reply in a nested thread it will say who in the thread it is for. If that makes sense!
Thanks PMRpro ! I should have realised that. My brain, if I still have one, should have told me that ! It is particularly fuzzy at the moment, extremely difficult to concentrate on anything.
Hi. I went for a gynae appointment last week and was told by the doctor (after she asked many questions) I probably have HIT. I am diagnosed with Fibromyalgia/CFS. She gave me a prescription for H1 and H2 inhibitors and said about a low histamine diet. She’s referred me to another gynae who knows a bit more then she does about it. My biggest problem is fatigue/PEM/body weakness. I’m a vegetarian and I’m really struggling with what to eat as I used to eat a lot of meat substitutes and can’t now. How long do I have to eliminate before I start to feel better? And different websites say different things are high in histamine. For example; cows milk, soya and gluten. Can I have them?
Sorry to hear you're suffering. I still don't know much about HIT or MCAS, but I know it can manifest in problems with just about every organ of the body, which is why people end up with so many consultants, many of whom have no idea what HIT/MCAS is or worse say they don't believe it exists. Sufferers are particularly prone to bladder and gynae problems. You're extremely lucky to have someone who knows something about it as few doctors do. Re the elimination diet, I felt better within about a week of going low histamine, but at first I hadn't cut out tea and when I did that made a bigger difference. For a few days I just ate chicken, potato or rice and peas or green beans, then started adding things back gradually, starting with 'safe' foods low in histamine. There are a few contradictions in the various lists of what is safe but everyone is different so it's a matter of individual trial and error. I've been fine with avocados and milk and gluten but still can't tolerate tomatoes or cheddar cheese. Many people who have problems with histamine also have problems with salicylates and other things which makes it more complicated.
Three months on, I've just had my inflammation marker blood tests done, and both ESR and CRP are almost half what they were in December and almost back in the normal range. Now this could be due to several things, the low histamine and low carb diet or maybe the PMR is finally going away or a bit of both. The markers have been stubbornly high for 7 years now, including when on Pred for 5 of those years.
When I saw my rheumy last week I gave him a list of my triggers and symptoms and to my surprise and delight he was very interested in it, said it might fit the profile of several patients he's come across. He is now referring me to an Immunologist. There are many Facebook groups for HIT and MCAS and I'm picking up info from there eg specialists to see. A lot of people struggle to get a diagnosis because it's so unheard of, although estimates say it probably affects between 1 and 17% of the population without many knowing what is wrong with them. Have you had allergy tests for lactose and gluten and nuts etc? Mine came up negative, as they usually do because it's not the classic Ig reactions. Hope this helps, feel free to private message me if I can help more, and maybe join some of the Facebook groups and read up on past posts.
An interesting post and thread! We are a bit out of our depth with this one. I searched other communities in HU for histamine intolerance and came up with nothing. There are a handful on food intolerances.
I read somewhere that the effects of histamine intolerance are often seen, rarely diagnosed. Some of the pains could come under the fibromyalgia all-purpose label unfortunately.
*Update*. Since doing the low histamine eating plan my inflammatory markers ESR/CRP have almost halved in 3 months, having been persistently high for 7 years, even when on Pred. Of course it could be that my PMR is finally going or it could be the histamines I was eating were causing some of the inflammation. Or because I've lost a stone, or a bit of all of the above.
My mother has PMR and very intolerent to Pred. Getting some relief from the Cronic headaches are her main goal. She has suffered with various skin problems , stomach disorders , GORD, swelling alot around face and eyes . I wonder if she should try anti histamines. Do they react with High Blood pressures meds or Pred? which type and what dose would be advisable to try?
Sorry for delay responding only just seen this. Anti-histamines don't actually cure anything or prevent a histamine attack, they just limit the effect on certain areas, H1 receptors in throat, respitratory system etc and things like Ranitidine work on H2 receptors in the digestive tract. The only way to reduce the effects of histamine is to avoid adding histamine to your body in foods and drink, as the 'bucket' is already full. You can Google a list of high histamine foods. The good news seems to be that as inflammation reduces so the amount of histamine you can tolerate goes up. Inflammation is one of the main causes of HIT, so as its levels fall, due to healing or diet or Pred you have less problems with HIT. I'm doing loads better since I've been doing a low carb diet and had the Depo -Medrone steroid injection, I don't know which is helping more, but inflammation levels started to fall when I started the diet in Jan, before the injection in March. All the best
I found this book invaluable : amazon.co.uk/What-HIT-Livin... I have been under the immunology services for a while but they are not very helpful. The immunology treatment was making me feel worse all the time. I asked to be referred to a dietician in reference to achieving a histamine reducing diet and that has been of more use, the symptoms have definitely calmed down. It’s just maintenance and acceptance that this is what I have to do/eat daily without exception.
Thank you for the info and recommendation kellthebell. I've followed a low histamine diet for nearly a year now and it has certainly helped. Every now and then I eat something I shouldn't by accident and that sets things off. From research there seems to be about a dozen possible causes of HIT, one of which is inflammation, which I know I have got, and I suspect that may well be my root cause. I live in hope that if I can get the inflammation down, and if I lose more weight, with a combination of lifestyle and diet changes, then the HIT might sort itself out. I doubt immunology will be much help but it'd be useful to rule some things out. All the best
I’d just like to say how thankful I am coming across this conversation! 🥵 The inflammation in particular is the worst for me, along with all the other systems problems, sorry, I didn’t mean to have a moan, ☺️ Just thankful I’m not imagining this or making it up, my Dr has gotten quite impatient with me and I’ve been suffering in silence but I’ve learnt so much already and will keep fighting for help from my ignorant Dr and some of the locums that have been the same! Thanks Ladies for giving me hope and helping me carry on! Merry Christmas! 🥰😘 x
It's near impossible to find any doctors who know anything about it. Nearest I found is an Immunologist who is vaguely aware of such conditions but then also dismisses them, but there isn't really a treatment pathway, you just have to educate youself and know what your triggers are. Keep a food and symptoms diary and compare to the SIGHI list. Some people also havve issues with oxelates, salycilates etc I think things are slowly improving for me after a couple of years of experimenting, I can tolerate a few things very occasionally now eg tea. Good luck and ask away if you need any more info
Thanks for your reply TC, one quick question as I’m waiting on a Dr telephone consult, probably won’t help. 🙄Where can I find SIGHI list? Sorry if I’m being thick. 🤪
Thee are a few of us on here who seem to have the same problem - and my rheumatolgist said a few patients have mentioned it to her. In fact rheumatology referred me to Immunology but then I drew a blank as they had no idea what I was going on about and haven't yet got any further. I seem to manage well by avoiding foods high in histamine, I just get caught out now and then by fillers in meds or things in processed food, eating out or ready meals can be tricky but I haven't done much of that this year. Being on steroids seems to help, but why exactly that is I don't know, it could be stopping reactions or lowering infllammation generally
Same here, I'm going to risk a nibble of stilton and a glass of organic Malbec next week. I had a proper cup of tea the other day - it was bliss, I miss tea more than I do alcohol
I found it thanks 😊 My Dr was useless on the phone and quite frankly I felt so ill I just listened to him droning on, I did mention ranitidine but he said that was not available, he was probably looking at prices on the computer! 🙄 I can’t remember what he’s prescribed but it probably won’t be any use or help. In desperation I’ve taken 20mg of prednisone which is part of my rescue pack for my lung. (I only have one!) The inflammation is still really bad, it’s been with me since I got up this morning, usually appears after dinner obviously depending on what I’ve eaten, I’m still new to this and learning more every day thanks to people like you. 😘
Ranitidine is not available - there was a product recall some months ago because of contamination issues in some products. Famotidine is from the same group of drugs (H2 inhibitors) and there are others
Ranitidine was withdrawn from the market last year, but there are other things that work as anti-histamine H2 blockers such as Famotidine. Some people find something called Montelkulast can help asthmas-like reactions in the chest, but as I am on steroids I don't need both. The best thing I did was go back to basics, I started on some safe foods, I think it was chicken and some green veg, then added things in ONLY ONE change AT A TIME. I kept a diary, one column what I ate, the other any reactions. Then I started to Google why I might react to those things I stumbled across histamine and sulphite intolerances and saw that it seemed to be exactly what I had. But I haven't found any doctors who can help me or know what I'm talking about, apart from the rheumatologists refering me to Immunology. I think it's something I just have to live with. Smells and environmental triggers are also a nightmare, I can't have flowers, candles, perfume or any scented cleaning products in the house so make sure you get rid of all that.
Thanks again, yes it’s such a struggle, plus my Dr is retiring on the 19th so hopefully he’ll be replaced by someone who can actually be bothered. I live in hope! 😘 Tips noted thanks, food diary started, and list of nasties available to me and for me to avoid!
Another thing you might find useful to have handy is Activated charcoal, it flushes things through if you accidentally get gut/tummy reactions from something high histamine. Half a Famotidine can help if I get a kind of 'warm, burning' feeling in my stomach after eating something as it blocks histamine receptors there. I haven't found digestive enzymes, DAO or quercetin or anything useful, my main strategy is avoid things that are triggers. I just cannot tolerate anything pickled or fermented eg yoghurt, most cheeses but can eat mild cheese like Baby Bel, mozzarella, butter, cream cheese so it's not a dairy intolerance
Thanks TC, I pretty much have the same as you’ve described with the foods, I’ve tried quercetin but it doesn’t seem to help, I’m taking vitamin D anyway because I’ve been shielding and vitamin C is supposed to help lower or block histamine? I can’t remember, brain fog! My Dr prescribed me 3 boxes of cetirizine 10mg of which does absolutely nothing, I continue to itch and he didn’t even address all the other things, he actually admitted on the phone to having not read my econsult or checked the photos I uploaded of my rashes! What a Doc eh? I just couldn’t be arsed to try to explain yet again as he always talks over me anyway. 😞 After the 19th and he’s retired I’ll try again. x
I've tried all sorts of antihistamines including Fexofenadine prescribed by GP and Immunologist but they don't seem to do much apart from maybe mitigate the effects of a reaction if it's only just starting up. Benadryl Relief seems to be best or Cetirizine. I had to get rid of all scented detergents, doouble rinse laundry, and only use Pure unscented soap and shampoo on my skin. I also have to wear nightclothes inside out so seams don't rub and cut out all labels from tops etc.
Hi TC, I’ve tried three different antihistamines but nothing has helped, I’m getting quite desperate as again last night I had to take to my bed because I really felt so ill, if it wasn’t for Covid-19 I think I’d have been to A&E by now, I just don’t know what else to do, I’ve even had thoughts of doing myself in to be totally honest.In my econsults over the last year I’ve almost begged for help but the Doctors at my surgery just aren’t taking me seriously, I feel they’re either thinking I’m making it up or they just don’t know how to deal with it? When filling out the econsults if I tick all the symptoms I’m suffering it actually tells me to get emergency help but I just untick until I get past it, (can’t get past it otherwise) I’ve told them in the boxes where I get 500 words but even that’s not enough!
I’m not one for bothering anyone normally so I’d have hoped they knew that about their own patients, of course I know I’m not their only patient! Two days until my Dr retires, I will try again.
I have done almost exactly the same as you, especially the natural soap for my skin and cutting labels out of my pyjamas, I don’t where anything else as I don’t go anywhere, I thought it was only me cutting labels out!
A lady on another forum said just yesterday, she can't wear synthetics - and has to cut the labels out if they used nylon thread to sew them in. You aren't alone!
It's a nightmare, I've struggled for 3 years trying to get medical help and both GP and Immunology have no idea what to suggest other than antihistamines. I have just had to eliminate anything that causes a trigger and most of the time avoidance seems to work. Interestingly I'm on high steroids now which are helping either by damping down the inflammation coming from polymyalgia or dampening down reactions coming from somewhere eg mast cells. Also I have spoken to two women this week with PMR, both in their 50s, who also have problems with food reactions and intolerances. Wish I could offer solutions but I'm stumped.
My husband and I have a guest house in the English Riviera, I’ve been medically retired for around six years or more, could no longer manage my workload, I used to run it on my own as hubby had a full time job as a chef, it’s only 7 letting rooms but was more than enough for me! I use to be working 14/16 hours a day during peak season, I didn’t really look after myself hence why I’m suffering like I do now! I’m not moaning, I really enjoyed being my own boss, just wished I’d taken more care and used the no word sometimes, I’ve been a people pleaser all my life! (Aged 57)I had most of my right lung removed 3 years ago and was able to walk better without having to use my wheelchair so often.
After a lot of research on the internet I’ve found that opiate analgesics could be the cause of these intolerances/allergies and I’m thinking MCAS but the Dr had never heard of it and clearly didn’t want to! Gosh I’ve just realised I’m waffling on! Sorry. ☺️
Thanks for sharing your fascinating story. Running your own business is hard work even without the awful health issues you have. I don't know your part of the world but I'd like to visit one day so good to know a place to stay, please send me details in a private message.
MCAS is hypothesised as one of the possible causes of histamine intolerance but few doctors are aware of it and many Immunologists dismiss it outright as their knowledge is all about Ig reactions so what they don't know doesn't exist, right? The only person who specialises in it privately is Dr Alxandra Croom, spirehealthcare.com/consult...
She used to do NHS but now only private and there is a long waiting list to see her. I decided in the end that even if I got a diagnosis there isn't really any treatment apart from maybe mast cell stabilisers, and steroids do that job too. I have been prescribed Montelukast by a local NHS Immunology consultant here in Leeds, which in theory helps with asthma type problems but don't take it because it doesn't seem to do anything extra for me that the steroids don't, but it may be worth trying again when I'm on a lower dose of Pred.
I have been trying to get a diagnosis for MCAS for over 14 years now, I completed a Urine test in April 2019 which suspected MCAS but nothing further done about it. After making complaints and now 126 admissions I have found MCAS is very difficult to diagnose because there is to much reliance on Tryptase, which has a time allowance of 60 minutes ( peaks) for first bloods taken then after two hours a half life (50%) result , bloods taken after three hours. A baseline test is carried out at 24 hours. These times cannot be met in most cases unless in a clinical setting. The 24 hour N-methylhistamine urine collection must be carried out during an episode not days later. Not many Immunologists/Allergists are aware of how to conduct these tests in the UK.
That's why I'm not going to bother going to see a private consultant, even one as knowledgeable as Dr Croom. There isn't really a reliable test and even if there was, there isn't really a treatment path for MCAS. General advice from MCAS forums (there are some good ones on Facebook) is to see a specialist in one particlar organ eg bladder, gastro, skin. It's horrendous, I can live with whatever I have it's just an inconvenience, but people like you who have severe reations and frequent hospital admissions deserve better
Nothing really, only seen people in America mention it; MCAS is a bit more known in the US, the only experts in it all seem to be from there, or Australia. Have you had it?
I know your posts were 3 years ago but I saw you're in Leeds and you've saved me a lot of time re histamine intolerance. I'm worse in pollen season -right now it's tree pollen. Seeking a test and not sure where to go . HIT is the main issue. I'm currently looking for a functional doc or a centre for testing. I'm on Meds for hypothyroid so I think there is a link somewhere. Feel fine at other times of year. How are you now?
Funny you should ask but I was planning to write a post 'Persistence pays' as in March I finally got a diagnosis of MCAS (Mast Cell Activation Syndrome) after nearly 4 or 5 years of pushing for answers and not letting Immunology fob me off. That said, I am still waiting, 2 months later, for them to write to my GP so I can get the Nalcrom prescribed. The first Dr totally gaslighted me and said I couldn't possibly be allergic to that many things. He is infamous on Facebook mast cell support groups for not believing in MCAS. Luckily the next one I managed to get transferred to for a 2nd opionion was a bit more sympathetic, ackowledged mast cell issues as the likely culprit and prescribed a few things but said there was no treatment pathway for MCAS on the NHS so that was all he coud do for me (not true). The latest one, a woman Dr whose name I won't reveal on here but can PM you agreed with me that it probably is mast cell issues. Hallelujah! What also helped was 5 years ago, after I'd kept the food diary for over a year and done my own research into HIT, I mentioned it to my rheumatologist who said 'we see this a lot with autoimmune conditions but don't know what/why etc'. My GP had and still has no idea what I'm talking about. They say it takes an average of 5 years for women to be dx with an AI illness but that's only because I did all the research myself or I'd have fallen at the first hurdle. So I'd say, keep a detailed food diary (and other environmental triggers) and be persistent. You say pollen though, which is more a standard Ig allergy than mast cell activation so your first start would be allergy tests via your GP I'd have thought which should be easy enough to get, although these days I'd expect a long waiting list post pandemic.
I saw it was an average of 11 years to get an AI diagnosis ... Does your rheumy know the progress? I can see that being a research project before long. I do find it incomprehensible that a so-called immune system expert can deny patients can be allergic to so many things. Even paramedics know about it!
Thank you so much for this update such a relief for you after all this time. Will pursue the allergy tests soon possibly private. Interesting it took a female doc to sort it. I had this with my GP practice, took 3 docs to diagnose hypothyroid, yet was text book. AI affects so many things. Huge connection between hypothyroid/blood sugar/ allergies. A friend said her Endo learnt a lot from her! Best wishes.
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PMR and Chronic Spontaneous Urticaria with Angioedema
New Year, old me??🤞
