Histamine Intolerance

[Dixzeland]

Hi all. I've been ill for almost 14 years without a diagnosis. I have learned through my own trial and era that I have an intolerance to foods high in histamine and foods containing gluten. My question is can chemical intolerance go hand in hand with histamine intolerance or Mast Cell Disease? I get very sick when coming into contact with cigarette smoke, perfumes, skin care products that obsorb into my skin and many more. Thank you, Dixie

[SheffieldJane]

I have read this too and become super intolerant.

[piglette]

I don't think this is the right forum for what you are looking for. It seems you fragrance sensitivity along with your other intolerances. For many people, Histamine Intolerance and Mast Cell Activation Syndrome go hand-in-hand.

[Dixzeland in reply to piglette]

Ss

[PMRpro Ambassador]

There are a couple of others on the forum with histamine intolerance - tangocharlie is one and I think she has done a lot of research, mainly because although her rheumy says she thinks it is seen quite a bit, the immunology department shows little interest.

There are also a couple of people who have been diagnosed coeliac since having PMR although it isn't clear if they were coeliac before. In early PMR I was allergic to something in commercial wheat - probably the starch and not the gluten since I could eat spelt, rye and oats without developing the same itchy rash. At higher doses of pred it improved, now on Actemra my immune system is suppressed enough that I can eat anything!

[tangocharlie]

Hi yes I have some kind of mast cell activation disorder and I have problems with foods that are high histamine and I also react strongly to smells. I've read that it is something to do with VOCs (Volatile Organic Compounds). People wih autoimmune illnesses such as PMR and Sjogrens often have mast cell issues too. It is hard to find help as there is no real pathway under the NHS; Immunology are not interested because it's not the kind of allergies they deal with, they are only interested in things that might kill you like nut or dairy allergies. Your best bet is going on Facebook where there are lots of support groups for MCAS and histamine intolerance, the organisers helped me in the past when I was trying to figure out what was wrong with me. I have written posts on here in the past but they were just about the symptoms and how I discovered it was probably histamine related, and it sounds like you've worked that bit out for yourself. Living with it is hard so talking to others is helpful. I don't think there is a forum on HealthUnlocked, but there are some on Facebook. If you click on my profile it should show links to things I've posted in the past and one back in 2017 or 2018 listed some useful sources of advice. Good luck, it's frustrating not being able to get help or a diagnosis but sadly far too common. There was a GP who started offering help when her daughter got diagnosed and she started doing private sessions but she was totally inundated with requests and fully booked up for years.

[PMRpro Ambassador in reply to tangocharlie]

How many of you are there on here? Why not have a private group via CHhat? You can have 10 of you to exchange experiences.

[tangocharlie in reply to PMRpro]

I think there migth well be 8-10 of us on here. When I get time I'll go over my old posts and see who added info. I'm totally overwhelmed with things at the moment though so probably not until the new year. There are some great groups on Facebook that gave and still give me so much useful info and advice. It makes me think of what it must have been like to have PMR or endometriosis or something 10 years ago, some determined people trying to make a difference in a world of ignorant and arrogant medics who won't listen. The first Immunologist I spoke to for example said to me and to others that he 'doesn't believe in MCAS' and the people in the Facebook group had warned me about him - such attitudes should not be allowed in the medical profession. i insisted on a 2nd opinion from another immunologist but we shouldn't have to battle like this. I'm finally getting a face to face appointment later this month for something I've been tryng to get help with for 4 years. Of course part of the delay was due to the pandemic but they tried to give me another phone appointment and I insisted on being able to see and talk to someone in clinic and maybe have some actual allergy tests. The most useful link in the chain was talking to a female Uro-gynae consultant about IC/painful bladder syndrome who agreed with me that it was probably mast cell related and prescribed Cimitadine, a histamine blocker, which has been a life-changer.

[PMRpro Ambassador in reply to tangocharlie]

I just do not understand "I don't believe in ..." and the lack of curiosity.

[tangocharlie in reply to PMRpro]

Exactly. We know of some old-school rheumies like that though don't we, luckily they're retiring and the new younger curious ones are on our side

[PMRpro Ambassador in reply to tangocharlie]

Still a few stick-in-the-muds who think they are above the rest.

[bookish in reply to tangocharlie]

Hi, sorry to jump in late to your post but I was looking for others with apparent histamine/mast cell issues because I'd just found a bit of information about association with functional B12 deficiency which is ringing huge bells and I wanted to see if it did so for anyone else! I've just been reading Lawrence Afrin's mast cell book and getting annoyed at some of the patient's histories clearly having a B12 issue but no mention in the text. So I did a search and found this, which obviously is advertising the site's B12 oil product (which I'm not associated with and haven't tried) but - well have a look and see what you think. I have a six generation B12 family history but am the only one with histamine, mast cell, chemical reactions so I'm seriously intrigued. I've always treated myself and no-one has had a clue what I'm talking about but I've just been offered a trial of B12 injections. It would be amazing if it helped! I've been more concerned about having the injections and reacting to them. b12oils.com/mcas.htm (G Russell-Jones). Low B12 is so common with autoimmunity and to some extent I assumed that dysfunctional mast cells would be natural with a dysfunctional immune system. I'm sure this won't be relevant for everyone, but might be of interest to some, B12d being so hard to pin down anyway. Best wishes

[tangocharlie]

Let us know how you get on. My B12 has been tested and is fine