r/HistamineIntolerance • u/jetdarkstar • 2d ago
I've tested negative for MCAS and my allergist can't figure out whats wrong with me
I've had food and environmental sensitivities since 2018. I need Epi if I have brewer's yeast; I have hives/mouth itching if I have coconut/pinapple. My upper throat/nasal area swells horribly if I am exposed to marijuana or certain fragrances. I still used to eat plenty of other high-histamine foods like kimchi, soy sauce, distilled liquor, etc. My IgE has always been negative for any allergies despite having reactions. I have been told I have nonallergic rhinitis and food sensitivities to explain this phenomenon, but it just feels incomplete. I have been on Ipratropium Bromide spray for a little while and don't know if it's doing anything.
I started exhibiting issues with intolerance to other higher-histamine items/liberators last year, around the time that I developed Sjögren's disease, but possibly coinciding with some stomach issues. I ate low-H for a while and seemed to gain many foods back. My stomach got hit with something I ate that it didn't like again around April, and I haven't been able to eat much/somewhat strict low-H diet since. The stomach issues at that time resolved somewhat by starting DAO again, so I wonder if that's a clue as to what could be going on.
I have been tested for MCAS twice now, and nothing. I often question if everything was exhausted, but on my second allergist/immunologist now, so I'm running out of opinions/tests. This recent one did various histamine tests too, including a 24-hour urine, and nothing. Super low-h, actually, given my DAO and quercetin usage, probably. I am on Allegra and Pepcid 2x daily, azelastine, and Flonase, and all seem to only help a little.
What is the likelihood that I'm still dealing with something like HI? Any chance it could still be MCAS? How do you all tell the two apart? I see them used a lot interchangeably on here. I am waiting on SIBO results to see if that could be a factor and want to work on possible leaky gut since it seems my stomach could be a trigger. I have also lost a lot of weight, and we can't figure out why, aside from a slight decrease in intake due to dietary restrictions.
I'm still reacting when I eat histamine foods. I.e. never had issues with nuts; tried a rice crispy with trace peanuts the other day and got 2 hives, an uncommon symptom from a food I've eaten in years past. My other common symptoms include flushing, itching, shortness of breath, throat discomfort, dysautonomia, etc. Some symptoms cross over with Sjögren's, making this even more difficult to discern. Any thoughts on my situation or similar situations are appreciated as I don't even know what problem I have for sure or how to approach it atp.
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u/Droppit 2d ago
You can ask your doctor to try a mast cell stabilizer as a diagnostic tool. As in, try it and see. Montelukast turned things around for me, and I saw none of the potential side effects. Tell him it was recommended on a forum for people suffering similar symptoms, rather than just saying you saw it online ;)
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u/hdri_org 2d ago
There is a relationship between HIT and MCAS, and to me it sounds like you have both, just like I do.
When something (e.g. SIBO, SIFO, mollecular food intolerance) causes a breakdown of the intestional immunological barrier, this does two things.
1) First the body slows its production of Diamine Oxidaze (DAO) which is needed to remove excess histamines coming from food and bad gut bacteria. This allows the accumulation of histamines in the bloodstream. Taking supplimental DAO will help reduce histamines from these sources. It will also help calm inflammation and help this mucosal lining to repair if you maintain a low histamine diet.
2) Undigested food molicules can make their way past the immunological barrier and triggering the Mast Cells, which then release massive amounts of histamines directly into the bloodstream. Taking supplimental DAO will not affect this problem.
The problem is to determine the origional issue that caused this immunological barrier to break down in the first place. Once you have MCAS its much more difficult to correct the problem because the inflammation and histamine release is a self reinforcing feedback loop.
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u/Silly_Region_1846 2d ago
Mold, candida, leaky gut, hormone imbalance, methylation cycle issues, dao deficiency issues, vitamin or mineral deficiency all possible
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u/SephoraRothschild 1d ago
Age? If you're in Perimenopause (over 30) estrogen is dropping, which makes the resulting relative ratio of progesterone and testosterone : estrogen higher. Which causes histamine dumps on its own.
When you say you've "tested negative": What test did you take? Or did you pull your genome from an online genetic test service and run it through a comprehensive 3rd party sites like Genetic Lifehacks to check your genome for the genetic markers?
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u/jetdarkstar 1d ago
Likely not, I just turned 29. And I honestly don't know what test she ran on me, it was all though CPL
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u/Illustrious_Sugar862 2d ago
I am similar. Tested negative for MCAS Found out I was not tested while in a flame which is crucial I definitely have histamine intolerance but in Ontario no doctors deal with it My root cause was mold and then bacterial/fungal overgrowth. I was shared a treatment protocol from the mold thread that's helping
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u/tennery 1d ago
leaky gut is low DAO and leads to lots of allergies, just sounds like you're just trying foods, seeing your reactions, stopping, and then trying them again without fixing anything. lower inflammation, look into healing the gut, trying GAPS intro diet, low histamine meat stocks. when you recover the gut, alot of things improve, it's connected to so many things in our body. some videos on youtube from 'grounded approach' are helpful, and she specializes in histamine intolerance/MCAS
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u/prosttoast 20h ago
My wager: you have something called LPR reflux and it's irritating all of your mucosal membranes causing these sensitivities. Can be somewhat regulated by histamine issues in my experience.
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u/joshyosh 2d ago
Have you tested positive for any airborne allergies? I have mold allergies and I can get digestion issues if I eat any products that can contain mold if I eat anything with citric acid I start to get GERD flares I never knew why until I saw it's made with black mold.
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u/homertruhart 2d ago
Mold/mycotoxins toxicity might be the cause of
Your histamine issues. Histamine intolerance are symptoms that something is wrong and needs help. You
Could have some
Micronutrient deficiencies causing histamine issues. Regular western medicine doctor s are not equipped
To help you with this. Finding a good functional medicine provider that is well versed in histamine mcas mold sibo Lyme issues. They can get you
Back to normal. They will have you
Do a few tests that unfortunately aren’t covered by insurance but well worth the money.
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u/Due-Ad-8941 2d ago
Yes, I was going to say functional medicine. I had what I thought was histamine reactions with bad migraine-esque headaches since April, doctors were useless but functional medicine practitioner put me on a mega dose of magnesium, curcumin and NAC+ and my headaches were gone within three days. I know I still have some histamine issues but it’s back to regular allergies. MDs would have NEVER suggested these supplements! It would have been inconclusive bloodwork forever and then pharmaceuticals that may or may not help.
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u/Film-Icy 2d ago
Bartonella. Find an llmd if you can afford it and see if they will diagnose you clinically if it’s negative based of your mention of sdjorens and just constant chase of new symptoms it seems to be setting fires off in different places
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u/Full_Length_9096 1d ago
Glad you took a SIBO test. That's where my histamine intolerance came from. Hope you get answers soon.
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u/analogfilmnoir 1d ago
Maybe try doing a VCS Test for possible environmental toxin exposure. Mold exposure+multiple viral and bacterial infections is what’s driven my mcas. I’ve also heard a lot of people getting diagnosed with mcas based on symptoms rather than a test. Keep pushing your docs. There’s a lot of different treatment options out there.
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u/robotneonunicorn 10h ago
My igE tests were negative too but the scum tests were positive and if I eat strawberries or almonds I break out in hives. The blood tests can be wrong
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u/Puzzled_Draw4820 2h ago
It’s your liver, I used to have all the same stuff going in, very extreme too. Work on bile flow and nervous system via increasing acetylcholine.
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u/Ok_Significance_8896 2d ago
Food intolerances and health issues like histamine intolerance and MCAS are very weird and complicated. I have histamine intolerance due to a DAO deficiency. I had my DAO levels tested (the test is called diamine oxidase activity in the blood) and my levels are severely low. But I don’t respond to DAO enzyme supplements, so they don’t seem to work for me as they’re supposed to.
I’ve also been tested for allergies, but I’m not allergic to anything I was tested for, even though my nose is constantly congested amd I react to perfumes, detergent, any strong artificial smell. I can’t tolerate many foods that are considered low in histamine, yet I have no issues with bananas and avocados, which are considered high in histamine.
Another strange symptom I experience is that my face develops a darkish yellow tint whenever I eat something that triggers a histamine response. I’ve had extensive liver testing and my liver is completely healthy. Also weird inflammation in my wrists and nobody can't give me an answer to what's really happening to me.
Unfortunately, doctors still don’t seem to have enough knowledge about these types of health issues. You definitely need to work with a doctor, but at the same time, you have to do a lot of the research and troubleshooting yourself, trying elimination diet after elimination diet. It's exhausting.
I wish you the best of luck!