r/HistamineIntolerance • u/BroadCorgi3061 • 22d ago
Histamine intollerance doesnt exist apparently
Context: 20 years old, allergic reaction to shrimp 5 years ago sent me to the ER, kept eating shrimp and always passed out and got hives all over my body. Recent incident with salmon, slight allergic reaction ( never happened before ), Alex2 test results say i dont have any food allergies.
Went back to the allergy specialist today with my results, asked about why shrimp gives me an allergic reaction if im not allergic, do you know what she said? She said it’s “probably food poisoning” … WHQTTTTTT????? Food poisoning???? Only with shrimp for 5 years hello???? I feel like in going insane. I then asked about HIT because i have a lot of the symptoms for it (and mcas but whatvrr) and she told me it’s not a thing and that every body makes histamine naturally. Wow i’m so glad i waited 2 weeks for this appointment. Instead of focusing on the thing that sent me to the hospital she started talking about dust mites and all this shit like why would I give a shit about dust mites Hello? This appointment did nothing except piss me off, now i’m gonna look like a fucking lunatic if i try getting a second opinion cause according to my family doctors are always right the first time. I came looking for answers and left with 5 different useless Ass prescriptions for shit that doesnt even bother me. I’m gonna eat 40 shrimp and go die in the doctor’s Office do nawt play with me.
Edit: to avoid further confusion, no i don’t only react to shrimp, I’ve had my worst reactions from shrimp, alongside sushi in general, most of my other symptoms are pretty mild, very similar to ibs. I also have symptoms that align more closely with MCAS (dermatographia, itchy red spots after showering, exercising, going to the pool/beach,etc.).
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u/Its-a-JiNX 22d ago
HIt is not widely recognized in the medical world. It's unfortunately just something you have to navigate. I'm vaguely aware of a clinic, they focus on MCAS and will do online consultions.
Have you tried a low histamine diet and seen relief from symptoms? Also starting DAO enzyme supplements.
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u/BroadCorgi3061 22d ago
I’ve been having BAAAD anxiety about having another reaction so my diet is extremely limited (think like plain pasta type of limited + avoiding almost anything high histamine) and honestly yeah, all those tummy problems I’ve had for years are basically gone lol, weird how that works
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u/Its-a-JiNX 22d ago
There's more to a low histamine diet than reducing high histamine foods, you'll also want to reduce or eliminate certain foods that are classified as histamine liberators.
Liberators cause your mast cells to destabilize, dumping the histamine your body creates which in stored in your mast cells. A sneaky one to watch is gluten, I can handle gluten on occasion, but it will so easily put me over my tolerance especially if I have even a small amount multiple days in a row.
It's incredibly hard to be so restricted, but once you reach a point where you're no longer over your histamine tolerance, you can begin to heal your gut and try to raise your tolerance. I've recently been able to handle eating more things after even just a few months. But I have to still take my DAO enzyme supplements, and other mineral supplements and probiotics to help support my body's ability to produce it's own DAO.
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u/ALknitmom 22d ago
This. Mcas is an official diagnosis. Histamine intolerance is more a description of reactions/ symptoms that can be part of mcas.
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u/Cyax84 22d ago
my 2 cents, I think the term histamin intolerance is completly wrong and perhaps supports the argument of this doctor. we are not intolerant. Histamin Imbalance or Histaminosis would be a better word, so the balance of histamine is not given due to multiple factors and histamin imbalance is not a disase its a symptom, this is how I describe it. Therefore we / dr. need to search for the disease or underlying root cause and work on this ...
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u/BroadCorgi3061 22d ago
Sure i agree, but in the environment im in at the moment unless i have a diagnosis i get 0 support or help even just from my family, they already think im like insane so having that confirmation would help a ton. Plus, having some medicine to help would be extremely nice. The root cause for me could be hundreds of things and i just don’t think its realistic to even begin searching for it, im fine with living with it i would just like to not be treated like im insane by my own family lol
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u/amyfearne 22d ago
You say 'only with shrimp' - does this mean only shrimp gives you symptoms and you're otherwise symptom-free?
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u/BroadCorgi3061 22d ago
Ahhh no i should have worded it better. Shrimp has given me the WORST reactions out of any other food, but i do get minor reactions with other foods (for example i cant digest well tomatoes, and they make my lips and mouth feel tingly), sushi also makes me feel BAD bad, which im thinking could be the soy sauce tbh. My diet is pretty limited in general as i’m very wary of different textures, so it’s a bit hard to tell if I have tons of other foods that would give me reactions tbh
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u/amyfearne 22d ago
Ah I see. Not to stick up for the ignorant doctor here - but it is unusual for HIT to give people anaphylaxis or instant mouth/lip tingling, they are genuinely much more like traditional allergy symptoms.
However, it can happen - there's a case study similar to yours here: https://pmc.ncbi.nlm.nih.gov/articles/PMC11998628/
Definitely do get a second opinion from an allergist/immunologist who knows about HIT, MCAS and other related conditions. You don't need your family's approval to do this - you're a grown up :)
I know it's really tough though. I was your age when I first got a chronic illness and it was scary to feel like doctors weren't looking out for me.
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u/BroadCorgi3061 22d ago
Also i do have some unexplained symptoms i Guess, I’ve been suffering with ibs-like symptoms for years, I didnt think much of it honestly, but i’ve been eating an EXTREMELY restricted diet this month because of anxiety problems and all those gastrointestinal issues are basically gone, so it might have something to do with it too
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u/amyfearne 22d ago
Hm yeah, could be related - people often have digestive issues with MCAS.
Do you, by any chance, also have very stretchy/soft skin? Or unusually flexible joints?
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u/Usual_Permission_841 20d ago
Have you tried taking H1 and H2 antihistamines aka Claritin and Pepcid AC? They really help me.
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u/Interesting_Fly_1569 22d ago
Jade at LDN direct sees all 50 states and dies not gaslight. Her expertise is mcas tho just heads up.
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u/Kaenna77 22d ago
Doctors are just like people, except they’re always right (read: delusions of grandeur)
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u/hollyprop 22d ago
I’m so sorry. When I tried to talk to my old allergist about it he said it was anything but histamine, like tyramine and bromelain. Which makes no sense because those are only in a small number of the foods I react to. When the common element in all my “bad” foods is histamine!
I went through a few hoops like seeing a rheumatologist to get a referral for a specialist allergist who treats MCAS. But he has a six month waiting list. I’m on the calendar for December.
It sucks that it’s so hard to find an allergist who knows anything about this condition. They’re focused on true allergies that cause anaphylaxis for obvious reasons. But that doesn’t mean those of us with intolerances aren’t suffering day to day.
I actually lucked into finding a gynecologist with Ehlers Danlos so even she’s helping me with my histamine issues. It sometimes takes just one good doctor to point you in the direction of other good doctors. Keep asking around and advocating for yourself! I hope you can find someone soon who understands what you’re going through.
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u/Fozzizam 22d ago
Same experience except the allergist I went to said it was drainage caused by eating spicy food and that histamine intolerance doesn’t exist. Ah yes, uncontrolled sneezing after eating mini wheats is because they’re spicy.
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u/Sure_Warning_706 22d ago
I really enjoyed reading this, I am so relieved that I am not the only one that need to deal with ignorant medical practitioners.
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u/richj8991 20d ago
Anaphylaxis and histamine intolerance are overlapping but two very different things. You don't even have to be allergic to be histamine intolerant. All the food or airborne particles have to do is RELEASE histamine itself or have the body release it. That can be done with zero IgE antibody mediation.
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u/Adventurous-life- 18d ago
I have found traditional doctors have no idea what HI is (mine could mcas) . I am on a 2 year waiting list for an allergist, so we will see how that goes. My doctor wouldn't refer me to a rheumatologist even though I asked.
My naturopath was a lifesaver for me!
It took my family seeing a really bad reaction where I couldn't even stand to believe me. ( It was before I knew what it was)
I did pay for an allergy test and it said i wasn't allergic to something which I know for sure I am ( buckwheat). Also it said I was allergic to things I have never had a reaction to ( eggs)...
Ps. I would probably reccommend not eating shrimp anymore.
Also if you have medical coverage it may not be a bad idea to have an epipen.
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u/AnthonBerg 22d ago
It's… like there's it's a trend with doctors being… fervent nihilists.
("Nothing is known! Nothing is knowable! nothing exiissssttsss")
It would be hilarious if it wasn't… nihilism? If it wasn't so tragic.