So baffled by allergy testing!

[vision blue]

HOpefully quickly as shoulder hurts: While exploring the mast cell angle, thought i'd finally test 2 acquired allergies I got sometime in last 6 or so years. Buyt once again, a mystery is revelaed. I am so damn sick of being a medical zebra

I get what appear to be typical IgE symptoms to all milk products including goat, sheep, buffalo, and camel and including yogurt, butter, even ghee. I get tiching, hives, sometimes swellings on face, get stuffed nose and runny nose, get stomach cramping and diarrhea (that's why have to avoid), and even the tiniest bits set off a reaction. Can't sneak it even a bit on the end of teaspoon-my immune system figures it out. The other item i'm allergic to is coconut, both ingested, and topical. this includes coconut oil.

Two oddities before i get to results. One is that the timing is not that of an IgE reaction. its delayed. Usually the delay time is 12 hours. This is what one might expect for an IgG reaction. Yet the symptoms do not seem like all igG. i also had IgG blood spot testing- no smoking gun, though i was off milk products for a couple yeas before testing. Second, struck me as odd that so many different species and forms (like ghee) would give the reaction.

ok, blood tests- every single ige tested- whey, cassein, lactoalbumin, coconut, and i think more were all NEGATIVE. its driving me mad! Alpha gal antiboides also negative.

i have one or two ideas but very curious to hear from others. anyting like this happen to you? any ideas what's going on with me?

 

[Moof]

It's not unusual for allergy symptoms to be delayed like this. It's apparently the most common presentation of milk allergy (at least in children). My mate's three-year-old developed it, but as the symptoms were delayed by between six and 24 hours, it made it very hard to work out which food was causing it. It was actually the midwife looking after her second pregnancy who suggested it...she turned out to be right.

 

[vision blue]

Thanks Moof- but why then is my IgE serum blood test negative for every component of dairy they tested for? Did his test turn up negative or positive? Is there a test that can demonstrate the delayed allergy?

And do you btw mean IgE allergy? some people use the term much more loosely to include IgG as well as non-immune mediated reactions.

. There was an old paper I had read, seemingly since forgotten by mainstream MDs in the US, that they documented 4 different types, 3 of which were delayed. But they don't specify if they meant IgE or some other reaction like IgG

And finally, if you by chance have a ref other than to the paper i refer to above (which i think was 60s or 70s,) i'd love to bring it to my allergist. I think she's terrific but doesn't seem to acknowledge the delay component - that's why we tested for alpha gal, its like the only thing people acknowledge cvan be a delayed ige reaction. When i texted her my bafflement, she said next step would be skin testing, but there's still 5 percent that don't show up on either skin or serum testing. but if its delayed, i don't see how that would show up either, unless they do the igg type delayed skin testing (which i had once by a derm for the dental chemicals i'm allergic to).

I'm willing to entertain its not ige, bu tthen i haven't seen anyone list all those symptoms for an IgG reaction.

Also doesnt' explain my delay to coconut -but will retest that one to assess delay again (but note, IgE was negative to that too!)
Also btw, i think i've had it since age 6 months or so, but then at age 4 I began to tolerate it again just fine. resurfaced as an adult after a year pushing it with sheeps milk cheeses.

I like the name Moof.

 

[kangaSue]

About the most plausible explanation I've found for this when it is not strictly an allegic reaction is that it is due to an overactive sympathetic nervous system. This (so, your stress response system) is often in overdrive when you have a chronic health condition, to the point that the body can become hypersensitive to everything, including foods, pharmaceuticals, chemicals, sounds, interactions, and nutrients.

https://www.holistichelp.net/blog/when-nutritional-supplements-make-you-worse/

 

[Moof]

The milk allergy that my friend's child has (and which many kids get) is not IgE mediated, but is still an allergy. I did a quick search for something that would explain it better than I can, and found this:

Differentiating milk allergy (IgE and non-IgE mediated) from lactose intolerance: understanding the underlying mechanisms and presentations
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979917/

A snippet from it:

Milk allergy can be either immunoglobulin E (IgE) or non-IgE mediated. IgE-mediated reactions typically occur immediately after ingestion whereas non-IgE mediated are delayed and take up to 48 hours to develop, but still involve the immune system. It is the symptoms of non-IgE mediated disease, which are commonly wrongly labelled as symptoms of intolerance, using either the terms ‘lactose intolerance’ or ‘milk intolerance’.

The only reason I've heard about this is because of the problems my friend Sally's child had. Previously, I was only aware of IgE-mediated allergy vs intolerance – I didn't realise there was a third category. From the article, it sounds as if there's fairly widespread confusion even among doctors about it! But anyway, if this is what you have, it would explain why your IgE tests came back negative. It doesn't mean that you don't have a true allergy.

 

[Judee]

I can't find it now but I think I thought I heard Dr Ron Davis say something about people with ME/CFS having a problem with processing fatty acids.

Most all of those those foods you mention are made up of fatty acids. I wonder if instead of an allergic reaction, you're not setting off some type other type of inflammatory immune reaction instead.

 

[vision blue]

About the most plausible explanation I've found for this when it is not strictly an allegic reaction is that it is due to an overactive sympathetic nervous system. e/

Certainly some fits with this- as i posted the same day as well as in the past, I am now in a state of sympathertic nervous system excess, right down to elevated serum metenphrines.

Still wonder then why milk and coconut are singled out; its true in general i react more to everything (chemicals, foods etc.) but these two stand out as having specific classic allergy symptoms that the rest do not.

Also, wonder what the delay is all about. Any idea?

I will follow that link you sent - i may have read that as title looks familair, or a similar one called something like "allergic to everything"

And wonder about mechanism. If not IgE mediating the itching, what then? i.e. what wold excess sympathetic nervous system lead to that in turn would lead to itching.

Feels like youre on to something, but like many things, having it make complete sense is always just beyond ones reach. dissapears just as one grasps for it.

thanks.

 

[vision blue]

I can't find it now but I think I thought I heard Dr Ron Davis say something about people with ME/CFS having a problem with processing fatty acids.
.

Ah , yet another really good suggestion. I do seem to be way too senstive to fats. One would think e.g. that ghee that specifically lists the cassein content (and presuambly all protein) as below i think it was 5 ppm, would not set off a reaction. Ditto the tiniest drop of mct oil (presumably also made from coconut) gives extreme GI reaction.

I did once try though 0 fat yogurt in hopes that would be differnt. I think i got the same result, but could not swear to it since may have been a confound of other things (was inducing reactions for a test which i ended up cancelling). Does this theory predict 0 percent fat would not give reaction? Not sure that fully explains it- why coconut soap on skin- or maybe that's fatty acid too. but other soaps ok, just coconut and after 3 bars, babusu (a closer relative), did as well. (was same by the way with camel milk. thought i found a winner, but after 6 ounces or so spread out over a week- allergy kicked in, and ever since, it hits same time as remaining milk allergy).

But interestingly, my reactions don't seem to be "intolerances" which one would expect i would think with fatty acid processing (which should btw be dose dependent which mine does not seem to be, or at least the smallest quantity can do it), but immune reactions- though not showing up with tests. And then again, there's that damn delay- though perhaps that fits in with the fatty acid - maybe those take longer to recognize than proteins??

i will look him

 

[kangaSue]

I've had severe gastroparesis for close on 20 years now and sensitivities to things have gotten slowly worse over the years, to the point that I can count on one hand the foods that I tolerate.

An extensive allergy work-up by an Immunologist revealed no true allergies as such but fats and fibre are difficult for anyone with severe gastroparesis to tolerate and can be a problem for anyone with just mild gastroparesis.

I can't put any oils on my skin either without causing a GI reaction and something which I can't get an explanation for from any doctor. The ileal brake is an interesting proposition that may be part of the problem. This is the primary inhibitory feedback mechanism that acts to control the transit of a meal through the gastrointestinal tract. This distal gut inhibitory feedback system slows the speed of gastrointestinal transit in response to a meal and fatty acids in particular are believed to be the main activator of it.

This gut brake regulates the speed of luminal peristalsis in the GI tract to maximize the absorption of nutrients. Stimulation of the ileal brake may be attributed to fats that have escaped more proximal absorption in the small bowel and can cause an exacerbation of nausea and vomiting.

With GI dysmotility, I think mast cell activation can play a role in it without you actually having MCAS or MCAD. In some cases it may be due to having Allergic gastroenteritis and colitis but I've tried a number of antihistamines and mast cell stabilisers without having any impact on symptoms.

 

[vision blue]

That's all interesting. on mast cell, agree. For quite a while when others said hey that sounds like mast cell problems, i thought that well mast cells are going to be activated under the circumstances, but that doens't make it a *disorder*.

i'm down to counting on2 hands the foods i can eat, for one reason or another but probably will be at 1 soon too. not sure i can get to 10- have to see.

depends also on what you mean by "tolerate". As i had mentioned, not just GI syptoms for me, but at least some foods cause what i thought were classic atopy (ige) responses.

I contacted my old immunologist now retired and we emailed some on Igg subclasses, which he's done research on. I also was reading more on milk allergy and like the first response had said in other circles (though not him) it is sort of well known than milk allergy and not just igg can be delayed. i was hunting thru th eliterature and it looked like it was mid 80s that some idiot in explicit attempt to "simplify" all the different patterns (his term simplify), he said look, we can divide this simply into fast reactions - IgE and slow reaciotns IGG and then we can categorize kids quickly w/o extensive testing and move forward from there. he acknoweded did not cover everybody. and it would appear ever since, that's been adopted even though not entirely true. and now its being rediscovered there can be dealys sometimes huge ones when it comes to milk. people then fudge on medators except that its very common to have both ige and igg. Also people acknowlege igg reactions can affect skin and not just gi track. si will just let it all go. and figure like many tests, i just don't show up. why break my streak with an allergy test. mreans though can't have any dairy since makes me lose even more weight. its too bad because before i acquired this, that was they way i gained weight - croissants every day, ice cream every day.