How do you deal with oral allergy syndrome and histamine intolerance?

Posted by npbranco @npbranco, Mar 13, 2023

I'm not sure if this is the right place to write this, but I'm dire need of a few words of support, so I'll try here.
For a few weeks now I've had slight difficulty breathing and some edema and tingling in my mouth when I eat most things. I've already done the tests and I have no allergies other than grass pollen allergy, but it has been manifesting this way, instead of through my respiratory system.
My worst symptom is actually difficulty swallowing, as I feel as if there's two lumps on the sides of my throath. Eating solid stuff makes the feeling more bearable, but drinking water makes it worse. Going out, even with a mask, seems to aggravate it too and the space seems to become some narrow I prefer to spit than trying to swallow. I carry an oximiter and it doesn't seem to affect my oxygene levels. The only thing that seems to help the feeling is tying a moist towel around my throath for a little bit of pressure. (weird much?)
I went to the doctor about 8 days ago and he looked at my throat for the grand total of 3 seconds before declaring I needed a 10-day round of amoxicilin and 7 days of Predsim 20mg. I'm now on my eight day of antibiotics and I feel a little faint when I take it. I was also supposed to stop taking the Predsim, but I feel like it is the only think protecting me from the throath edema, since the antibiotics cleared my sinus, but are not working for this weird feeling in my throat. I'm thinking of stopping the antibiotics before I complete the 8 days, because I'm now afraid that the faint feeling means more. Should I do it?

So today I went back to my allergist and the first thing she said is that I could totally have an anaphylactic reaction because of my polen allergy. She just said it like that, two minutes into the consultation and with a very calm voice, looking straight at her computer. She also said I should only eat what is on the low-histamine diet and she also made another extensive list of things I shouldn't eat (basically all fruits and veggies) to avoid the tingling feeling. When I asked her what I was supposed to eat (I'be been living on a diet of meat, potatoes and rice and potatoes are starting to make my mouth tingle too) she laughed right on my face and didn't give a solution. She just straight out laughed. I felt like crying, since eating has become such a trigger to me I do it twisting my hands.
I was already on the verge of despair, but I soldiered on and asked her for something to protect myself from reactions, but unfortunately, Epipens are not available in my country. She said she wouldn't give me one anyway as I'm low risk for now. I don't feel low risk! I told her that the feeling of swelling in my throath and mouth was causing me to panic and that I needed at least an inhaler with some corticosteroid to help me keep it down. She refused me.

I have no idea what to do now. I'm going to use the last of my economies to go to another allergist this Thursday, but I have no ideia how to survive that far. At the end she threw me out because she had another patient and she told me to not leave the house to avoid the allergen, to not be alone ever and to not eat anything that is not on the diet. She washed her hands of everything, she said I could basically react at any time, but at the same insisted it was not serious. I feel like she now only crashed my mental health (and then she had to gal to send me to a psychiatrist to investigate my fear of dying), as I have a constant feeling of impeding doom following me everywhere, but also put a stop to my indepedent life. I'm now a house-bound, scared 35-year old baby depending on my family for everything.
In the end she tripled my anti-histaminics dose and that was it. I'm completely stumped. What do I do? How do I go on from now? How do I live with this constant voice telling me something right around the corner could just kill in 8 minutes? I have no idea how to go on. (And now I feel too dramatic, sorry)

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Profile picture for npbranco @npbranco

Thank you! That was really really helpful and I feel like there's a light at the end of the tunnel after all. I did what the previous person who answered told me to, and went to an ENT specialist today and he actually listened to me. He examined my throat with a camera and I have an ecography of my whole neck tomorrow. He also wants to check my thyroid and told me we'll keep investigating no matter what (he also very seriously told me I should ditch my allergist and find another one) . It was a vastly different experience.
Really, I have no words to thank you for the kind words and the whole lot of sources you provided me with. I'll start looking into them right away. But can you explain again the carbonation? Does carbonated water help with the swelling for you? I'll try it tonight.

Well, now I believe it is a matter of taking a deep breath and start finding the things and habits that work for me. Oh! And I'm also getting the Mast Cell Activation Syndrome tests this time! =D thanks a whole lot!

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Profile picture for TSB @terrirussell

From the USA…….I am so sorry that this is your life right now……I do know how you feel. I have Mast Cell Activation Syndrome and you should probably become very familiar with that. You learn to live on a low histamine diet and they teach you on line. The one I like the most is Dr Beth OHara and the other is Dr Becky Campbell . Look up both of them and you will never feel alone again. They also have what you have and diagnosed in their 20s or 30s I think. I have always had allergies and overkill reactions to certain things. The covid shots sent my immune system into this nightmare and I don’t beleive I will ever be out of it, although it is much better due to what I eat. Medical doctors don’t want anything to do with us…..they are fast to send us off to naturopaths as they understand it more. My reaction is all over my face….I get small dots of mast cell reaction on my skin and my face swells up …..I could barely get them to close and suffered the better part of a year w extreme fatigue and swelling and extreme reactions to any kind of pollen. I could also get that feeling in my throat that hurt like anything and the only thing that helped was carbonation. Even in a store I would run to the cold cases and get a diet anything to get that ball of swell to shrink. Sometimes pressing into a door frame. The ice cold carbonation gave me a method to deal with it. There are a lot of over the counter supplements you can take to help you and you are taught that on line, but I spent a great deal of money before I realized that Becky Campbell’s program of histamine relief in her supplements, was actually a cheaper way to go and know I had them covered. It sounds as if you are having internally what I have externally.,,With a little of it internally too. I can eat one wrong thing and get a reaction so I totally get it. And btw…..same is true of the millions who have MCAS around the world!……when it’s really bad it’s like long covid……brain fog, fatigue, anxiety, headaches, and lack of motivation to do anything. One of the great helps to me was a Cromolyn Sodium Nasal Solutions……..nasal spray!….on Amazon…..it kept my sinuses open and throat as well. It also gives me a brain awake, like coffee. Brain fog was gone. I also had a similar eye drops to clear my foggy vision……again cromolyn and salt……when the sores on my face got really bad, I used both sprays on my face and it calmed right down. It took me a long time of eating very very carefully and then adding back just as carefully…….one thing at a time and only eat whole real food. The problems are w the ingredients in any recipe. A year and a half later, I still have breakouts and I have to go back to the very essential food only. 2 hard boiled eggs for breakfast, and some turkey or chicken for lunch, maybe a peach. Some Quaker rice cakes but only lightly salted type ,,,dinner last night was organic turkey and steamed broccoli . My body loves beef and heals quickly on the carnivore program diet. I am O+ blood so that may have something to do w it. I am a counselor and was teacher so I dug into this like science…..which it is. There is so much help for you on line…….but nearly none in a normal medical office. I’m here if you need me. I also want to say that I would keep Benadryl around you all the time. I take two to sleep and also in my purse at all times. It’s very cheap on line. Also the spray if you have issues topically. You are NOT alone by a long shot………..there are millions of us out here!!!! God Bless!

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@terrirussell Your response, of May 2023, is really wonderful!! I had been looking for something else and found your comment. You’ve probably helped many people you don’t even know yet!! Thank you, thank you! Becky

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I feel your pain. I control my histamine reactions with generic fexofenadine (Allegra) and a lo dose of prednisone everyday. It took 5 years to get things under control. It is best to speak to your doctor about this. I always have albuterol on me and an epi pen. My PCP supports me with all of this since I haven't had good experiences with allergists.

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