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food allergy--citrus, citric acid, coconut, or ?


kbutton
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I am having lots of reactions. Overall, my histamine level has been running high for the last two years (I get itchy skin, hives under stress, etc. from time to time). I suspect I am developing some kind of food allergy or allergies, but it's very difficult to pinpoint. I am gluten-free, so I am not a stranger to figuring stuff out. I believe hormones may be playing a role in this--I am in premature perimenopause, and I've known women to have a lot of histamine activity (skin itching, etc.) during peri. They had to take antihistamines daily for this. I get scalp itching with no visible redness, swelling, rash, etc. unless I am taking antihistamines. Until recently, I've had to take antihistamines nearly year-round for all of my pollen/dust allergies, but they've improved to the point I no longer need to do that. It's possible those antihistamines have masked other symptoms over time (though my skin prick tests revealed no food allergies as of about 10 years ago).

 

I am definitely allergic to grapefruit--my ear canal swells, and I start getting itchy and getting hives. I have been this way for years with no other reactions to citrus until (possibly) lately. I can even take small amounts of grapefruit seed extract in my multi-vitamins without a problem.

 

The last meal I reacted to was gluten free pasta, some kind of hard, grated cheese like parm (on the old side, feeling sheepish about that--maybe a mold issue?), pesto sauce, pine nuts, and chicken. No citrus in sight. There is citric acid in the pesto sauce. Never reacted to any of these foods before. I reacted a little later with my ear turning red and warm, my throat itching (on the outside), and eventually my tongue swelling.

 

Previous reactions were very mild but similar reaction (just the itching and read ear) to coconut macaroon (could very well have had some citrus flavoring/extract). Before that, I had a big reaction that came and went quickly to a meal of cabbage, GF egg noodles, and uncured, GF pork sausage. The cabbage was fried with coconut oil. No tongue swelling, but amazing amounts of itching on the outside of my throat and lots of red, itchy, hot ear action. It was a new kind of sausage--maybe the second time I've had it.

 

I have gotten itchy/ear stuff with vitamin C tablets, but not with my other multi-vitamin tablets that contain C or citrus.

 

Thanks for hanging on with me here...so, from what I read, citrus contains a kind of citric acid, but citric acid as a separate ingredient is made from sugary stuff and mold? (I'm thinking the cheese could have been the problem with the last reaction due to mold, maybe.) If I am reacting to coconut, it's totally out of the blue. If I'm reacting to citrus, that makes sense with the grapefruit problem, but I've had lime juice and lemon juice on things recently with no problem (very concentrated as well), and I've even a cutie with no problem. That makes no sense, and it doesn't account for the reactions to the meals I've had, though it does explain the vitamin C tabs (both kinds I reacted to are derived from citrus fruit). If I am allergic to citric acid, it would explain reacting to pesto in one dish, not explain the other meals necessarily, and not really explain not reacting to citrus in juice/fruit form if those contain ctiric acid naturally.

 

I do have an allergist, but I haven't seen her in years and am not sure I can get in without waiting a couple of months because it's been so long. I have pollen allergies, but the foods that have caused the reaction are not listed on lists of oral allergy syndrome, except for oranges, which seem to be an unlikely culprit at this point. 

 

Any ideas how to work through this list of weirdness?

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That's hard to sort.

Can you find out what was in and produced on shared lines with the sausage and noodles?

 

I hope it's not this, but I'd add tree nut to the potential concerns.

 

Coconut itself doesn't automatically/usually react in those people tree nut allergens (even though labeled as tree nut), however a lot of both coconut and gluten free items have tree nut cross contamination. Most of them in my experience, and that includes most of the coconut oils. I found one safe company for coconut and coconut oils. I have very few gluten free brands we can use with tree nut allergy here.

 

Tree nut issues would explain the pine nut/pesto issue too.

 

Can your general doctor do a blood RAST for tree nuts and coconut?

 

Edited by sbgrace
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Okay, i"m adding nuts (which I've never reacted to) and corn (no reactions either) to the possible list since I haven't reacted to much of anything before--everything is really up for grabs. Some of the items had corn, but I don't think the sausage did. It's not on the label--it was a natural, GF sausage that Aldi carries once in a while. It does have "natural flavor." Whatever I am reacting to is new to me, so I should probably not leave out the idea of nuts or corn. The pesto had soy in it too. It's a different brand than I usually get. I don't have the regular kind here now for comparison. I have had soy other times recently with no problems.

 

Yeah, the citric acid not being citrus, but citrus having citric acid stuff is confusing.

 

I would love better information on sulfites than I have right now--that's very broad. I would not be surprised if that came back suspicious.

 

Any thoughts on the cheese mold/citric acid mold idea?

 

I can ask the allergist about RAST testing. I would actually love some thoughts on types of allergy tests prior to going in to see her--skin tests, blood tests, food challenges, etc. I am just concerned about finding a ballpark idea of cause since I suspect I will have to wait to get in. I am super concerned to get this sorted before February--we are going on vacation, and vacation and food allergies is frustrating without it being a big, new learning curve. It's so easy to "forget" those hidden things. If I eat gluten, I don't like what happens, but I won't die. I am not so sure about this other stuff. It's getting scary. I suspect antihistamines have been hiding more minor reactions.

 

So please, send me links if you have some good ones.

 

Thank you so much!

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BTW, I will try to make some kind of spreadsheet for things I've reacted to. I think most of the things I ate are things I can track down again. Not 100% sure, but likely. The nuts are a real conundrum--I eat them a lot and have no trouble. Nephew has peanut allergies, but totally different symptoms. Some family members have cashew troubles, but only if not processed correctly and is directly related to severe poison ivy allergies (jury is out on me and poison ivy--the only time I had it was when I got oils directly into a deep scratch on my arm). I will not get it even when DH and I are exposed together, but I think I *could* get it if I'm not careful.

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Sulfites is very broad. Dh is sensitive below the threshold that needs to be reported. Some folks are sensitive, but not allergic. The foods that are affected as too many for me to list. HOwever, sulfites are naturally occuring in grape skins, so if you can do grapes and grape products okay,you are probably not sensitive to sulfites.

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I am sorry I can't help on citric acid or cheese mold.

 

Just want to say good luck. I had a heck of a time figuring out a new allergy last year. The thing that gave me the worst reaction was something I had been eating for ages. Simple ingredients but processed. And I can't believe I did this but one package - - just one had a different ingredient and I didn't notice. Thankfully dh did and I am almost 100% of the new allergy. I had just been in getting tested to confirm yet another new allergy and didn't want to go back right way for testing but I am soon to confirm the second allergy.

 

Anyway I have been through a lot of skin testing, RAST , and Immunocap testing, & elimination, and am happy to give any info if you want. Have only had to do baked challenge due to the history of reactions and test results but depending on the next visit we might be doing a food challenge. My allergist is great and has such better intuition than I do so a lot of times I have gone to her with my food stories and she has been able to have a strong (and better) sense of the culprit. I see her yearly and for us it has been good to stay in contact because I can message her in between visits. It has also been good to get confirmation that some allergies went away

 

The spreadsheet is such a great idea. I know part of my problem is I always mean to write things down and don't.

 

I can't link for some reason but foodallergy.org has pages on different tests and then there is one on related conditions (Eoe, FPIES, etc) and intolerances. Quest diagnostics has some info on the ImmunoCAP test. Might be too basic but in case it helps...

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I would highly suggest finding a naturopath and getting an intolerance test done. It is a simple blood test that tests 75-100 things (depending on which test they use). The skin prick test the allergist does only tests for IGE, the intolerance test will also test for IGG allergies.

 

That being said, what about eggs? All of us have reacted to eggs at one time or another.

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Sulfites is very broad. Dh is sensitive below the threshold that needs to be reported. Some folks are sensitive, but not allergic. The foods that are affected as too many for me to list. HOwever, sulfites are naturally occuring in grape skins, so if you can do grapes and grape products okay,you are probably not sensitive to sulfites.

 

I don't have trouble with grapes, but I don't eat them all the time either. 

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I can't link for some reason but foodallergy.org has pages on different tests and then there is one on related conditions (Eoe, FPIES, etc) and intolerances. Quest diagnostics has some info on the ImmunoCAP test. Might be too basic but in case it helps...

 

This is a great link. I am not well versed on the testing aspect, and this helps. 

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I would highly suggest finding a naturopath and getting an intolerance test done. It is a simple blood test that tests 75-100 things (depending on which test they use). The skin prick test the allergist does only tests for IGE, the intolerance test will also test for IGG allergies.

 

That being said, what about eggs? All of us have reacted to eggs at one time or another.

 

I am still unsure about the role of IgG in food allergies, though I will consider it.

 

Eggs--there is some trouble with eggs in the extended family, but every single person with that profile has gastro symptoms with the eggs, usually nausea and even vomiting. If I'm having trouble with eggs, it's showing up 8 hours or more later. That's some delay. (I eat two eggs for breakfast every morning and have for years.)

 

Again, I am keeping an open mind because this is definitely a new allergy regardless of what it is, but I would be stunned if eggs are the culprit. I would expect more consistency in that case because I am such a consistent consumer of eggs (including mostly consistent time of day).

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All the allergists around here insist on skin testing, and then sometimes follow up with blood immuno-cap RAST just to get numbers to track.

 

However, I have had regular general practitioners (and pediatricians and gastros too) order RAST blood.

Would your regular doctor order RAST for you of any suspected foods ahead of your allergist appt?

 

I believe you can do the blood tests on anti-histamines, though it's been a long time since my son has done anything other than skin allergy testing. You can't be on anti-histamines during or for days prior to the skin tests.

 

 

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I have lost my linking skills. I will try to point in the right direction and link later if it would help.

 

For sulfites, again this may be too basic and the label law info only applies in CA but if I Google "food allergy Canada" sulphites, it comes up with a page with info.

 

Food allergy.org has a page on unproven methods if you want their POV. If the naturopath route is for you, stop reading me and I will say no more. :) I am so relieved I was steered away from that and I do credit my allergist for getting me as far as I have.

 

(if it matters I am not anti-"natural" or pro. With my regular MD's approval I used an herbal remedy for a mild condition. But I really don't want to discuss those tests so I will stop!)

 

Since we first were tested the Immunocap was made available and that was extremely helpful. It is not the first test you would have done but depending on initial tests (which a good allergist interprets with your history and symptoms and will do challenges if needed), the Immunocap can really help. I know it is available dairy, peanut, egg.

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I have not yet figured out a good use for my family doc/NP practice except to sign papers and give me my inhaler refills. I know, that's harsh, but it's unfortunately true, and they are one of the more open-minded practices around here that I hear about. I need to start looking again. I have encountered some great practitioners at walk-in clinics, so maybe I need to keep track of which ones leave and where they go.

 

The Immunocap sounds very promising from what I googled--I like the idea of a blood test because I may very well have problems with a reaction when I am not supposed to be on an antihistamine. I am finding out that my reactions do seem to follow my cycle, so I think hormones play a role somehow. My reactions are pretty much always in the evening as well, and there are some days that I will have mild (no tongue swelling, just hot, itchy ear, itchy scalp, and itchy neck) day after day at about the same time for a week or more, and most of those times don't seem to be connected to food at all. I also noticed in thinking back that my "food" reactions have been on evenings when we're eating late--closer to the times when I was having reactions that weren't close ot meal times. I am going to track this more carefully. Maybe that will help with the timing of skin prick tests.

 

I am not sure how flexible my allergist will be about where to start, but I trust her to be pretty thorough. She is the most open-minded doctor I've had over the years. I am certain she thinks I'm a bit odd, but I am pretty much always right about my body, and she takes that very seriously since more standardized methods of measuring asthma and such have not been reliable for me in the past (like those stupid peak flow meters!). I have a proven track record for my oddness, FWIW.

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  • 3 years later...

Hey kbutton,

Pretty much everyone I mentioned my issue with citric acid to says "well, stop eating citrus."  Too bad citric acid is in everything, either naturally or as an additive...and a lot of it is in the weird and unexpected places like corn and potatoes.  I, too, was confused at first by finding out the "citric" acid comes from everything under the sun that has nothing to do with citrus.

I know this thread is from three years ago now, and I assume you may have sorted much of this out by now, but if not, or for anyone else with these problems, here's a summary of my dietary problems, and a couple of citric-acid (CA) specific resources to help you.  

NB:  I didn't read this *entire* thread, as a quick skim showed people touching on important traits that I have confirmed (at least relative to me, obviously there is a lot that can be going on).

NB2:  I am not an expert by any means, but I am a math, science, physics, chemistry and programming nut, so though I'm not claiming any of this to be working data for you, I simply mean to point out that when I tested through all this, it was done in a very methodical and logical manner.  I know how to test things, as best I can, given not actually having medical testing equipment on-hand.  

I'm 35.  I found out 18 months ago that I had congenital celiac disease (CD).  The most severe class (anti-body counts were literally off the chart; my doctor actually laughed out loud reading the result), and turns out it's been responsible for a LOT of my problems through my life (not just digestion based;  I personally react HIGHLY to gluten on a mood level; 12-16h after consumption I stop talking, become sullen, moody, irritable, and basically can't stop crying.  Messy....and this lasts for 3-7 DAYS.  Destroyed my life.  haha.  I laugh, but I'm serious.)   Unfortunately, I had to leave a very lucrative career a whopping two years before actually finding out what the cause was.  Still on disability from the effects.  It made me beyond exhausted to the point where I couldn't get out of bed for more than a few hours per day, all of which I could barely stand up for.
  
Once gluten was sorted, then onto lactose. Brutal secondary lactose intolerance (LI) (specifically caused from the CD damage).  No level of lactase supplementation combats the lactose intake; it can mitigate it slightly, but it's *never* worth it for me, even for things that are technically deemed lactose-free (pre-treated or otherwise).  

The result of the removal of gluten and lactose?  Well, I wasn't sitting on a toilet 24/7 and I could actually do some stuff again...but...a lot was still happening randomly GI-wise (turns out that corn was also a huge thing for that), but more specifically, I was reacting to something in terms of my throat.  Had been choking on food (coughing from ingesting not only foods, but liquids), and constant congestion, not to mention biting my tongue and cheeks a lot, all of which I was basically ignoring because correcting for CD/LI had been my focus.   I also had a pre-existing issue with one of my lungs, and always being out of breath... 


I do everything 100%.  Very black and white.  So, there was zero gluten, and zero lactose in my diet, so what the hell was going on?  The funny part, I don't even remember what I was searching for, but it had NOTHING to do with citric acid (CA), and on this page (which was just someone's random comment... a testament to why *I* am typing this now...because it's changed everything) was that their comment referenced CA causing breathing issues, and I was like...hmm...that's never been suggested as a potential cause for me (I used to run 10km every single day....and only now, after cutting CA out, have I been able to start running and exercising again....after probably fifteen (15) years...)

Now, very conveniently for me, I stumbled across the link I'll put at the end of this, happened to be a site dedicated to CA issues from someone with an obvious science background (or affinity, at the very least), a fun writing style, and comprehensive, well laid-out data.  I generally ignore 95% of what people write on the internet, but this looked very different, right from the start.  

Using the site, I realised just how high my CA intake was, and cut out the major things (namely beverages:  I had been using water flavouring to increase my water intake...it was a HUGE part of my problem).  I hadn't woken up without being stuffy and blocked up probably three (3) years.  I woke up breathing normally inside of two (2) days.  Simply amazing.  It's been about four (4) months now, following a highly CA reduced diet.  The difference is simply astounding, and now I can very clearly tell when I have consumed even mild amounts of CA, because I struggle to swallow, become fully congested, and if I consume enough CA, I can't breathe well the next day (similar to how gluten is more of a time-bomb for me, whereac lactose is a 30-120 minutes response).  Repeated over and over through tests.   If it's not CA causing the problem, I'm allergies to being alive. 

On the allergy note, namely the "allergy v sensitivity/intolerance" usage.  I just did a blood IgG response food panel for sensitivities (this is different than an IgE response, which is an allergy).  IgG response (intolerance) is your body's inability to deal with something (say, lactose:  the damage celiac caused my insides means that I can no longer produce lactase to counter the lactose), whereas CD itself is an auto-immune response (IgE, allergy).  One is problematic, the other can be dangerous and life-threatening).  I will be doing my allergy testing in a week (both skin prick and the blood panel), because my throat/lung problems with CA are becoming more troubling, and I feel I may need an EpiPen, just in case).    

For the food panel, I tested to have "elevated sensitivities" to 52/222 foods or food ingredients (and this panel goes so far as to include horse meat....).  This panel has no direct testing correlation to CA testing....but it overlapped with highly with my issues with both CD/LI/CA.  The only exception was the fruit category, amusingly said most fruits were fine (again, from an IgG standpoint; I bet when I get my IgE panel done in a week those will all pop; for example, apples are listed as low CA, but I can't eat one without my throat feeling tight; allergy, not sensitivity).  Unfortunately, when you combine my CD/LI/CA issues, you are left with VERY little food.  It's still doable, I haven't died yet, haha...but it's...very very very different than normal eating.  You can't eat out...hell, I can barely eat at home.  There are plenty of GF options out there, and then you can cut the dairy out of them....but the CA makes it borderline impossible.  The latter does depend on your tolerance (on the site I list at the end, I seem to be able to tolerate items at 0.1g/100g, and 0.2 is....fine-ish....but anything 0.3 or higher and I notice it.  The writer can't even do what I can....but you may be able to handle more.  I basically can't have grains (gluten-based), dairy, nuts/seeds, fruits, eggs (yolks or white) and a lot of vegetables.  I can't even have legumes (only green beans (no others) and chickpeas...and some lentis).  I can't even have rice, cassava or amaranth (GF options, but I either have an IgG response, or they have CA levels beyond my tolerance).

It did cost me $325 CAD to do it (sure you can find cheap deal ones online...but if you have issues like I do, I really wouldn't skimp on it, plus reviews of those ones tend to say they're a waste). Mine was done through Dynacare (https://www.dynacare.ca/DYN/media/DYN/eng/Patients Ind/GDML-Food-Intolerance-Brochure-for-WEB-EN_REVISED.pdf) in Ontario, Canada.

The linked page below goes into more detail (and has external sources), but CA issues are I believe classed as a "Type I hypersensitivity is also known as immediate or anaphylactic hypersensitivity. "  (which then I again, believe classes as an allergy...but like the CA vs citrus issue, you now have "allergy" and "sensitivity" being used in near-similar ways.  What you had to remember is that scientific definition is logical and makes perfect sense when you dig into it, but on the surface, to the average person looking for answers, it seems contradictory or confusing.  Similarly with people talk about "natural" versus "chemical", my personal favourite:  Sorry to ruin everyone's day, but chemicals are natural too, and there are tonnes of "natural" and "organic" compounds that will kill you damn near instantly! =P  Point being, don't get stuck in common-use terms.  Pay attention to what is actually being said, not how they're saying it.  Organic doesn't mean at all in science, what it does in the supermarket, and if you're looking for answers, look to the science. =)

The primary site I use:
https://citricacidallergy.wordpress.com/staying-alive/

Amazingly useful.  Lists CA content by food group, CA levels, has label-reading tips, even goes into what's not on labels, misleading label content, and even some processing-level CA contact/introduction that will never be listed (the person has a HARDCORE reaction to it.)

I also just last week found this site (https://www.verywellhealth.com/citric-acid-allergy-symptoms-and-how-to-cope-1323907)
More of a basic intro to some reactions, and a few related articles about potentially connected conditions).
I only very very very minimally browsed the root site to see if it seemed usable, but what I read looked like it had potential (for CA or otherwise), but I'm just guessing on that and figured I'd post it anyway if it proved useful for anyone else.  Really I just still use the first site above.

At this current moment, I actually interrupted combining my food panel/CA values into a convenient page for reference, colour coded and grouped by food.  If it looks pretty enough I'll post it to show my dietary limits.

I know this was long, but it's a lot of experience rolled into one post.  I hope it's helpful to you, or anyone.


As per everything relating to health, everyone should always remember that we are all different.  For example, I may be highly reactive to all this food...but pharmacology and my body are the complete opposite:  I basically don't react to a lot of medications; I don't even bother with anything OTC.  Half the prescription strength stuff doesn't work on me.  Point being, learn what works for you, and what doesn't.  There is no unified resource, whether doctor or website or posts like this that have all the answers.   
 

Andrew

p.s.  As per your subject re: coconut:  I'm currently in the testing phase for that, so I'm not sure of my reactions to it yet.

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It could be you're not allergic to any of them, it's just that both meals had a couple high-histamine foods in them, and your histamine levels were already higher than your body could take.  Aged hard cheeses (parmesan, romano, etc)  are high in histamine.  So is anything with pork.  When my allergies are bad in the spring (I'm extremely allergic to mold, so the day after a rainy day I'm miserable) I limit pork, cheese, bananas, and any other aged protein.  And if I decide I want them anyway I take some combination of DAO (which is very expensive), benadryl, and an H2 blocker like generic Zantac.  The worse my allergies are, the more I stick closer to either only eating frozen meats or eating lower histamine vegan foods.

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A few thoughts.....

1. Coconut is such a rare allergy that some allergists doesn't believe it exists and doesn't know that there is a specific blood serum test for it.  (I know, because I have had two idiot allergists in my life and I do have a coconut allergy.)  Quest Diagnostics offers the test and I looked up the order form for it for you: http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=60814N&labCode=SJC  There is a nut mix skin prick test which contains coconut, but is not coconut specific. It also has a high false positive rate.  The gold standard for coconut allergy testing is a basophil test or a food challenge.  Given the severity of my anaphylactic reaction, I wasn't super hip on the idea of a food challenge as the parent of still young children.

2. Katy's posts are spot on. In my personal life of allergy adventures and autoimmune dysfunction, I have noticed two correlations: 1. I go through periods of food sensitivities that aren't true allergies if my gut dysfunction is off. *ANY* use of antibiotics throws me off for quite a while. I must use probiotics.  The turning point to eliminating my food sensitivities was to go through a version of the paleo autoimmune protocol to heal my gut. Since then, I've only needed probiotic tuneups and all of my sensitivities have stayed gone. 2. My hive/skin reactions to food are highly tied to how full my histamine bucket is.   It's peak tree pollen season here, so I'm stuck with lower histamine vegan foods also.  Zyrtec + Zantac aren't cutting it for me right now in terms of maintaining control of my histamine levels. I'm reacting to everything but they aren't true allergies. It's just my body is out of control.

3. The only way you're going to really really know what you're reacting to is to go through a food elimination diet protocol. Even testing with an allergist has its limitations. By all means, get on the wait list, but in the mean time, I would go back to the beginning of starting with a homemade beef broth, and gradually adding foods every few days.  It's time consuming but waiting for those delayed reactions and going through the process once and for all will likely give you the clearest answers. 

4. If you discover that you have citric acid, citrus, sulfite, or coconut issues, look at all of your household and beauty products. They have put coconut in dang near everything these days and it's exceedingly hard to avoid it.  

 

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8 minutes ago, Katy said:

It could be you're not allergic to any of them, it's just that both meals had a couple high-histamine foods in them, and your histamine levels were already higher than your body could take.  Aged hard cheeses (parmesan, romano, etc)  are high in histamine.  So is anything with pork.  When my allergies are bad in the spring (I'm extremely allergic to mold, so the day after a rainy day I'm miserable) I limit pork, cheese, bananas, and any other aged protein.  And if I decide I want them anyway I take some combination of DAO (which is very expensive), benadryl, and an H2 blocker like generic Zantac.  The worse my allergies are, the more I stick closer to either only eating frozen meats or eating lower histamine vegan foods.

3

 

Quite correct!  My younger half-sister who shares similar issues with me (interestingly, our shared father has none of this, but of our non-shared mothers have some of our problems, but no where near the severity), made note to me of histamine levels for her problems, and she had a little benefit from a focus on that, but nothing substantial (and my brief testing of that so far wasn't particularly informative...). 

That's my intended focus after my allergy test results come in, as I'm still amongst other specific item testing I need to finalise first, as if I change too many things too fast, I might miss the underlying cause.  It's on the docket, I assure you.

Once everything is reset to a baseline (basically, minor removal has been too slow to find the problems, so more radical elimination was required), I will have a more stable state to re-integrate certain things (I already have zero cheese in my diet, aged or otherwise, and almost no pork for various other ingredient issues (even when freshly packaged)).  I don't seem to have issues with banana, which is unfortunate because I haven't been a fan of them since I was a child.  =P  Oh well.

Frozen meat for the win!  I get my 'burger tube' as I call it (from Costco).  Ingredients:  Beef.  Can't have them on buns or anything (even GF buns), but whatever, it's what's required at the moment.  

Logged your DAO link in my Save for Later list =)  I do have Benedryl on-hand, but like said, it's been ineffective to-date.



 

 

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