Does anyone have histamine intolerance?

[Loubprv]

Hi

Just wondering if anyone out there has histamine intolerance which can be ( albeit rarely so don’t panic!) related to PV?

Louise

[Conneryfan]

I am allergic to cetirizine, have many allergies and have been diagnosed with ET.

[DariBee]

Actually my doctor allergist found out that I have very very high tolerance to histamine. She said that high she has never seen before. I think this has something to do with my PV. I used to have problems with digesting before I found out I have PV, after I started treatment and my blood counts improved my digestion improved too.

[Loubprv Volunteer in reply to DariBee]

Gosh lucky you!!

[beetle]

Hi Louise. When I go into hospital (which I have done with alarming frequency this year!) my discharge summary lists things I am allergic to/intolerant of. I seem to collect things as I go that are totally untrue. I had allergic to penicillin on my file for many years despite my protestations!Intolerant to histamines must leave you on antihistamines for ever. Actually I am for the itching that has come with my MF when I’m too hot or too cold. Does this intolerance cause you specific problems? Xx

[Loubprv Volunteer in reply to beetle]

HiTo be honest it’s had a far greater impact on my life than PV.

The symptoms are horrible - flulike feelings nausea vomiting itching severe headaches joint pain lethargy / lack of motivation/ fatigue tinnitus insomnia the list goes on!

I feel like jumping in the lake with a brick round my neck some days!!

Very limited diet - can’t drink any alcohol, no cheese, no processed meats no fish or shellfish.

I can eat beef lamb and chicken but it has to be really fresh ( histamine doubles in meat every half an hour)- went out for supper last week. Despite instructions our host had bought the lamb and kept it in the fridge for 4 days ( I asked her to freeze it and cook from frozen - which is actually fine) boy did I know about it.

I can eat pistachios and a few almonds but no other nuts, no tomatoes, no citrus fruit, no pineapple or watermelon ( honeydew is fine) no papaya but mango is ok no banana , nothing out of a tin, or out of a packet, honestly the lists are endless. Nightmare!! AND no caffeine or chocolate. 😡😡😡

Rant over.

Would be nice to chat to someone who knows! I need a histamine intolerance buddy.

Ah well. Mustn’t moan, it could be a heck of a lot worse and most days I count my blessings and not the down side. Cup three quarters full. Xx

[johoho in reply to Loubprv]

Hi Lou, I'm really interested in your knowledge around how histamine levels change in meat/different meats. Can you tell me where to look for more info on this?

[Loubprv Volunteer in reply to johoho]

Hi Jo

Well we’re not really supposed to chat about none Mpn stuff on here but have a look at

histaminintoleranz.ch

It’s a superb Swiss website ( trust the Swiss!) worth joining up if you have histamine intolerance. So much info including a very comprehensive medication list ( for instance morphine is a massive histamine liberator as well as loads of other drugs)

I have also a brilliant food compatability list I could email to you. If you contact Maz she’ll let you have my email address.

I can’t post it on here. Louise xx

[beetle]

Oh Louise that all sounds like a nightmare. Don’t any antihistamines help? It is perfectly ok to rant on here as I have recently been through unbelievable stress and found here was the only place I could safely rant. I’m a glass half full sort of person too but recently found my glass had a crack and a leak in it. It’s filling up again now but I think we ‘copers’ find it especially difficult when we come near to the limits! I hope they can find a way to make life easier for you soonVery best wishes, Jan x

[Loubprv Volunteer]

Thanks so much. If nothing else am losing a Pound or two!