histamine intolerance after menopause

I know exactly how you feel. I've been treated the same way by Doctors. First they don't even know what you are talking about, like you rae crazy and it's all in your head, so they don't help you and then when you go and search your symptoms and conditions trying to understand what going on they get mad and say to stop reading nonsense online! Unbelievable.

I was going to ask you, since you mentioned that this started after a bad respiratory infection, that now you think it was Covid, like me, don't you think that if we have long Covid, meaning that the virus load is still high, our mast cells are still battling the virus then liberating a lot of Histamines as a response of our inmune system? Please let me know what you think.
Thank you

Hi there!

I am sorry to hear that you are suffering from this. I would like to convey some key concepts that helped me the most so that you and others may (hopefully) benefit:

The key effect of histamine in the body is vasodilation. It's a nonlinear system, so once you get vasodilation it's easier to get more vasodilation. If you are histamine intolerant and eat a food with histamine in it you will get a LOT of vasodilation. It takes a few hours (maybe even days) to die down so that if you then eat other foods that just happen to be vasodilators it will seem like you are reacting to them. A lot of healthy fruits and vegetables as well as environmental factors, and things in the body (like hormones) also produce vasodilation. So it can seem like you are getting symptoms uncontrollably and can hardly eat anything.

The thing you have to do is go off a few foods that are absolutely known to have a lot of histamine in them, let it calm down, and then see that you can eat the other foods. The foods that absolutely have histamine in them and that I cannot eat are as follows:

any fermented food or vegetable (things like pickles, sauerkraut, etc.)
buttermilk
sour cream
sourdough
hard cheeses (pretty much any cheese except fresh mozzarella -parmesan is esp. bad)
yogurt
homemade yeast breads
a very common food additive called "natural flavorings"
vinegars
raisins
processed and slow cooked meats (salami, hotdogs, etc.)
alcohol
chicken that is not fresh
pork
fish
spinach and eggplant also have histamine but I can currently eat small amounts of spinach

Some excipients in pills will also stir up histamine from mast cells in the get. The only one that definitely did this for me was povidone, unfortunately found in many, many pills including Allegra and Zyrtec.

It is not true that Benadryl, Allegra, or Zyrtec will block DAO. There is absolutely NO evidence for it and sites that promote that idea are irresponsible. However, I did have to order a generic brand of fexofenadine (Allegra) without povidone.

Good luck with your symptoms and I do hope you get well.

Best Regards,
Beverly

I think that the possible covid was incidental. In fact, I was very asymptomatic during it because I was taking a lot of antihistamines and vasoconstrictors. What happened is that I got a sinus infection afterward and took antibiotics. I've noticed that I get a lot of symptoms on antibiotics (I think it depends on the specific ones) because some of them do block DAO. That caused me to have an attack big enough that it became obvious that I was reacting to foods -foods would hiss in my ear. I didn't do an elimination diet. I simply reacted to foods and wrote down those foods.

There is a lot of confusion regarding histamine and mast cells. If you are histamine intolerant because you don't have enough DAO, then that has nothing to do with your mast cells. In fact there is some evidence that histamine binding will actually reduce mast cell activity overall. I have shown no evidence of allergies or reactions to any other substances.

Also, if it's because you have some autoimmune condition then that is also a completely different mechanism and you would have symptoms of that condition. I do not have the symptoms of any autoimmune condition. In fact, the extra vasodilation makes me feel great (when I am not actually in the midst of a reaction). Also, autoimmune conditions are relatively common and doctors would recognize my symptoms. Every single doctor I went to said they had not encountered the symptoms before. One factor in my case is that I have very good cardiovascular fitness so my vascular resistance is low. This makes vasodilation easier and I will be more symptomatic.

Beverly

Beverly thank you for all that information.I don't think I have an autoimmune problem. I just was wondering since I have read so many things about histamine intolerance after covid. But I'm going to have my hormones checked after you mentioned your estrogen was very high. I've always been estrogen dominant in the past, so maybe I'm still are even if not having my period. I have read that high estrogen = high histamines.

I read that too and thought it was worth pursuing. I do want to clarify that when I took a more accurate test my estrogen was not high at all. So it was not that in my case. I did have a very, very bad reaction to estrogen supplementation though. That's because estrogen is a vasodilator.

Best

Welcome to Mayo Clinic Connect. I hope you find encouragement in your discussions with folks have similar situations.

I would like to say that things have stabilized and I am perfectly OK eating and cooking for myself at home. I eat a wide variety of foods, and the only whole foods that I cannot eat are eggplant, fish, and pork. I buy chicken carefully, cook it immediately, and freeze leftovers.

The main issues now are associated with contacts with our medical system. It's also difficult to travel. I am currently on vacation in CA; became caught up with other's expectations; ate carelessly, and then developed a cluster headache after attempting to eat pork. The resulting severe headache required a course of prednisone, which lowered my immune system. I caught a bad cold and had to go to urgent care. I've been coughing all night but not able to take the usually liquid OTC cough medicines. (Liquids can be especially bad and it doesn't say exactly what's in them.)

So the familiar and demoralizing routine: having to explain to yet another set of doctors why an underlying condition could effect my symptoms and I could have a bad reaction to antibiotics. I have to say: In this case they were especially attentive and actually listened. A doctor prescribed an epi-pen when I described the nighttime facial, lip, tongue, and throat swelling that sometimes comes with bad reactions. I cry when I see it. The problems with doctors and getting care are worse than the symptoms themselves and I am especially touched when a doctor actually cares.

It's been 2 years and I should say that of all the practitioners that I saw for this, it was actually conventional MDs who finally believed me and did what they could. It just required persistence, and very detailed descriptions of the foods and symptoms. They operate under a horrible system, don't get much time to speak with patients, and are generally overwhelmed with people who have made crazy self-diagnosis on the internet. But I currently have a PCP, neurologist, and allergist/immunologist all caring for me. It's been an incredible journey.

Thank you for your info. Is there any test to know if one is Low in DAO?

I am so glad to hear you are finding some balance. I am still experimenting to see what works and doesn't. Of course, every time I pick something that doesn't work I feel I go back to square one and I get all my symptoms back. It's very frustrating and debilitating, but reading comments like yours give me some hope I would also some day would learn how to navigate all these problems and get my life back, or at least some.