Desensitization for delayed food allergies

[luark]

With classical food allergies, the kind that show up in IgE RAST testing,  the old model is that you just avoid the food.  But gradual desensitization by taking tiny amounts of the food, has been shown to be promising in research.  See for example http://apjai.digitaljournals.org/index.php/apjai/article/viewFile/1388/1141

So could desensitization work for delayed food allergies, of the kind that don't show up on skin or blood allergy tests?  This kind of food allergy might be an IgE-mediated reaction localized in the gut, or non-IgE mediated, or a combination.

Many people with delayed food allergies just avoid the food.  That isn't too bad if you only have one or two food allergies, although people may get hypersensitive to an allergen when they strictly avoid it. 

But when you have many delayed food allergies, avoidance turns into something that causes a huge amount of trouble, and you may be left with too few foods to have a reasonably good diet. 

Allergists talk about "cyclic food allergies" that develop from eating too much of a food.  These allergies don't show up on conventional skin or blood allergy testing.  But these cyclic food allergies are said to go away after a few months if you don't eat the food.  For that kind of food allergy, avoidance probably makes sense. 

But what if, like me, you have delayed food allergies that don't go away after a few months of not eating the food?  Mine have lasted for many years. 

It may be that for strictly eliminating the foods one is allergic to, is actually bad for one's immune system.  The immune system develops tolerance for allergens, mostly via the GI tract from what I've heard.  Lots and lots of foreign proteins come into the GI tract, and the body has mechanisms for developing tolerance to these proteins.  These mechanisms work by being exposed to the food – not by avoiding it!

Also, I read that inhalant allergies are thought to be regulated via the GI tract, because some of the allergens you inhale, end up in the GI tract. 

So avoiding the foods one is allergic to completely, may interfere with the body "learning" to develop tolerance to allergens.  Eating tiny quantities might train one's body to develop tolerance. 

Perhaps one should keep on eating foods one is allergic to, in small enough quantities not to cause a bad reaction.  I found that oral cromolyn, Singulair and loratadine (Claritin) make my food reactions much more mild.  Using those medications, I can consume a tiny amount of the food without getting too sick.  So that's what I'm doing. 

I have "rotated" most of my foods for about 10 years. What this means is that if I eat a food on one day, I don't eat that food again, or anything related to it, until 4 days later.  This helps me avoid developing allergies to those foods as well. When I haven't rotated foods, I have sometimes developed new delayed food allergies, even if I only consume small amounts every day. For example, I developed a ginkgo biloba allergy from taking a ginkgo supplement every day.

So, I'm trying eating tiny amounts (about 10 mg) of foods that I've developed an allergy to, after taking oral cromolyn, Singulair and loratadine.  I'm eating a given food only once every 4 days.  Since this clearly helps in maintaining tolerance to foods, it may help in building tolerance as well.  I eat a tiny amount of some food that I'm allergic to, every day - so every day, my body gets a signal that it needs to tolerate allergens.

For a long time, "delayed food allergies" have been thought to be very different from "true food allergies".  People have described "delayed food allergies" as non-IgE mediated, or even as "food intolerances", meaning the mechanism does not involve the immune system.  In some cases this is true. 

However, at least for me, it's looking more like these allergies are rather similar to "true food allergies" – and thus, the way of coping with them may be similar, too.  Some researchers are coming to think this, also. 

IgE-mediated allergic reactions involve an immediate reaction, when the mast cells degranulate and release histamine etc.  But they also involve a late phase, when other parts of the immune system become involved.  So some "delayed food allergies" might be "true food allergies" with a mild early phase that doesn't show up in conventional allergy testing, but an intense late phase reaction. 

My delayed food allergies start making me feel sick about half an hour after eating the food.  That is actually consistent with IgE-mediated allergy, and not very consistent with a cell-mediated reaction.  Cell-mediated reactions usually start about 24 hrs after eating the food. 

Also, because the mast cell stabilizer cromolyn helps prevent my food reactions, they probably do start with mast cells degranulating- just like "true food allergies". 

   It's been found that mast cells can be degranulated in an antigen-specific way by immunoglobulin free light chains.  See http://dspace.library.uu.nl/handle/1874/221010
      FLC's provide a non-IgE mediated allergic reaction that involves mast cells.  So some "delayed food allergies" may be mediated primarily by FLC's.   FLC's may also be involved in inhalant allergies.  FLC's might be associated with autoimmunity. 

Some more info on what's going on with me:  I probably have celiac disease, an autoimmune disease triggered by eating gluten.  I'm not thinking of reintroducing gluten, because it can trigger an autoimmune process.  I went gluten-free in 2003. 

I have many inhalant allergies that have shown up on skin and blood tests.  My delayed food allergies are probably not be caused by celiac disease, because I started having weird food reactions when I was 20, same time my inhalant allergies started.  I came down sick with what was probably celiac disease when I was 43.  However, my food reactions were a lot worse in the first couple years I was gluten-free. 

I found out about my "delayed food allergies" by a series of elimination diets followed by food challenges.  It helped me a huge amount emotionally to eliminate these foods.

However, over years I found I had allergies to almost every food I had been eating more than occasionally.  I hardly have anything left to eat!  And none of my allergies have gone away with avoidance of the food. 

My food reactions start about 1/2 hr after eating the food and last about 4 days.  Mostly, it's a groggy sick feeling, but I've also had belly pain, back pain, frequent urination, joint pain, mild itchiness all over my body, and psychological symptoms like anxiety, tension, being more emotionally reactive.   This kind of food reaction seems to be rather common, except that I've had pain in my kidney area and I haven't heard of anyone else having this symptom.  I can have a reaction from a fraction of a milligram of food protein.

My "oral tolerance" mechanism got messed up for whatever reason – celiac disease, bad gut microbes, stress, who knows!

But I have asked myself recently, did I help create this awful situation where I have terrible inhalant allergies AND severe "delayed food allergies" to almost all common foods – by completely avoiding so many foods?  Maybe my oral tolerance mechanism can heal itself if I eat food allergens in tiny quantities, taking allergy medications beforehand. 

I can get oral cromolyn relatively cheaply from a compounding pharmacy.  The brand-name version, Gastrocrom, is extremely expensive. 

Alternative-medicine practitioners have tried to deal with "delayed food allergies".  They generally recommend avoidance of the food, probiotics, and sometimes, special diets.  How seriously their recommendations should be taken, is very unclear.  There's some evidence in favor of probiotics. 

[twinturbo]

I thought Celiac is a genetic condition meaning its triggers are not caused by environmental conditions nor can the intolerance be outgrown though by avoiding gluten the villii can heal.

Also that it takes more than self-diagnosing a gluten intolerance to follow best known practices of managing Celiac as a disease, that a GI specialist would advise and monitor.

[luark]

I thought Celiac is a genetic condition meaning its triggers are not caused by environmental conditions nor can the intolerance be outgrown though by avoiding gluten the villii can heal.

I'm not trying to get over my gluten intolerance.  I plan to avoid gluten grains permanently. 
Celiac disease has both genetic and environmental contributions. 
It's an autoimmune disease.  I have another autoimmune disease, Hashimoto's. 
But what I was talking about here, is desensitizing from the delayed food allergies that I have (not including gluten grains). 

[luark]

To clarify:  I don't know if my food allergies would show up on skin testing.  I haven't had skin testing for food allergies.  I have had a Candida allergy that shows up on skin tests, and that's a kind of food allergy, because many foods have yeast. 
My blood tests for IgE-mediated food allergy have been negative, except for a test for corn which was "equivocal". 

[twinturbo]

There is an existing thread in Main about OIT, SLIT desensitization. The long term prognosis is not good but some are meeting success. There is also a current article on why OIT is not ready for general roll out.

Additionally, I saw you mention Xolair. I was wondering if you have been following the development of CemX.

[luark]

There is an existing thread in Main about OIT, SLIT desensitization. The long term prognosis is not good but some are meeting success. There is also a current article on why OIT is not ready for general roll out.

Thanks.  What I'm doing is experimental - I'm sharing my best guess about how one could desensitize the delayed food allergies - and curious about whether others have tried this. 
I used to subscribe to a celiac mailing list.  A lot of celiacs have other food intolerances, but for most of them it's only a few foods, and they say the food reactions go away after ~5-10 years.  This hasn't happened for me.  My food reactions are less severe than they were right after I started avoiding gluten, but they are still pretty bad. 
Once I got an email from someone who said she'd gotten over her "other food intolerances" by eating tiny amounts of the food, and gradually she was able to increase the amount.  I didn't try to imitate her at the time because I got too sick from food reactions.  But now I know I can prevent most of the reaction by taking allergy medications beforehand.
It might be an easier matter to get over a delayed food allergy than a systemic IgE-mediated food allergy.  I don't have to worry about dangerous reactions, for one thing. 
I suspect that avoiding so many foods rather than getting my body to cope with the allergies, has messed up my immune system in general.  The body makes anti-inflammatory cytokines as well as IgG "blocking antibodies" to deal with allergies.  My immune system might really need those anti-inflammatory cytokines. 

Additionally, I saw you mention Xolair. I was wondering if you have been following the development of CemX.

I haven't.  The allergist I see is a fan of Xolair.  Xolair, by being specific for IgE antibodies, has demonstrated that IgE may play a role in many diseases, when it was unclear.  See http://en.wikipedia.org/wiki/Omalizumab
I'm getting Xolair for incredibly bad inhalant allergies.  It clears the IgE right out of the blood.  It doesn't have any dramatic effect of eliminating allergies for me, but that's probably because my allergy problems involve a lot of chronic exposure in my nose.  Chronic exposure can change the nasal tissues so they become even more reactive to allergens.  As my nose recovers from chronic exposure, the Xolair hopefully will help more. 
And I would looove it if Xolair eventually did away with my food reactions as well!

[twinturbo]

I see. I ask because we follow Dr. Chang's work, including his his further development of Xolair (next generation CemX). I still have his presentation recorded from November 2013 along with a couple of slides. Because the focus was on mechanism blocking IgE from receptors I'm not sure he presented anything involving IgG. It did largely include effectiveness on asthma a known co-morbid condition.

Few follow Dr. Chang's work, it's easier for us because he continues his research in Taiwan which is easy for us to access. I was just wondering how much you were following his further developments on mechanisms. Like I said we still have the presentation my husband recorded of Dr. Chang's further work on Xolair and CemX. Hopefully he's cleaned up the audio because it sounds like you might find that presentation of use or interest.

To clarify, Dr. Tsewen Chang is the inventor of Xolair it's in the wiki link you posted just read the History portion. He continues his work on anti-IgE in Taiwan. Specifically, CemX.

[luark]

I see. I ask because we follow Dr. Chang's work, including his his further development of Xolair (next generation CemX).

So you are hoping that Xolair might help with food allergies? 
I read that Xolair made desensitization from systemic peanut allergies go a lot faster, but it was given in huge amounts.  Also that people who are getting Xolair for asthma say their systemic food allergies become milder. 

[twinturbo]

The entire congress was focused on mechanisms of allergic disease. Essentially sensitization much further up the chain as in root cause. That by the time the symptoms of food allergy manifest in the patient that the allergic march has already gone too far to truly be reversed. Therefore not much the symptom treatment front but earlier up at the chain at the root cause which is what Xoliar (and CemX by extension) attack.

The congress was called APCAACI 2013. I posted a lot including some papers in Main. This is a good reminder for me to get the audio up when feasible.

The gist my husband got from Dr. Chang's presentation is anti-Ige blocks IgE from biding to the cell receptors. It further binds to itself in lattices and gets "swept away" from the bloodstream.

The moral of the story is allergic disease shares a root, the allergic march is sensitization and once sensitization ball gets rolling we show symptomatically. If one were to look at food anaphylaxis alone it looks like allergic disease is only rising in a limited amount of Western nations. Looking at the rise in allergic disease reveals patterns of sensitization globally manifesting and not all of populations have symptoms manifest similarly, or in the case of food allergies to the same groups of common allergens.

Look at APCAACI in Main. You can see dust mite in tropical zones is epidemic compared to temperate and that asthma is epidemic in correlation to dust mite sensitization along with pollution rates. It's quite a complex puzzle.

[CMdeux]

If your allergies are IgE-mediated, Xolair would improve them.  The speculation about desensitization protocols and xolair is happening for two reasons, so far as I can tell:

a.  Xolair improves, but does not entirely mitigate, the threshold dose and reaction severity commonly associated with peanut allergy in particular.

b.  Peanut desensitization has the highest demand from patients, and those patients are otherwise unlikely to outgrow and will face life-long risk of death from anaphylaxis... but it also seems to have some of the highest risk in desensitization protocols. 

Xolair seems to allow for safer desensitization with peanut.  It's not clear yet that it results in BETTER desensitization by any means. 

We've had several members who have experience with Xolair and food allergies. 



Allergists talk about "cyclic food allergies" that develop from eating too much of a food.

Not the reputable sort, they don't.  OY. 

There really is NOT evidence to support this kind of model of "allergy."  I'm sympathetic-- believe me, we chased this particular wild goose when my MFA daughter was a toddler and preschooler.  Those were some dark, dark days.  I was desperate for answers and there weren't any, so I was willing to set aside my natural skepticism (and I have a PhD in a related discipline in the physical sciences, so I'm in a far better position here than most physicians, never mind patients).  I mention that only to note that I do understand why someone can become willing to attempt to find connections independently using whatever means available.

But this is an area where the science gets very very fuzzy in a hurry because (bluntly) there are SO many quacks operating that it all turns into hash and mostly, none of the legitimate researchers and physicians want to TOUCH the stuff with a ten foot pole.  TT has a unique angle on this in light of Asian research circles where homeopathy and other grossly predatory quackery hasn't tainted the entire research field in TCM and similar promising avenues of research.  Personally, the quacks in this field make me SO angry-- because they really do taint the field so thoroughly that authentically good researchers in North America won't go near it because it is the kiss of death professionally to have Marcola endorse (or spotlight) anything that you've written.  {SIGH}

Unfortunately, that leaves patients who have weird, unexplained... stuff... happening to them-- in a sort of limbo, where they can't communicate frankly with their physicians if they are good ones, or in seeing alternative practitioners who are really more about quackery than evidence-based practice.  Or seeing practitioners that aren't really as good as their credentials might otherwise imply.  Believe me, they're out there.  Having written a few books or news articles isn't the same as being competent.  (See my link below)  Or-- turning over stones themselves in an effort to self-diagnose with the aid of the copious amounts of information on the internet.

The latter is a dangerous occupation for laypersons, however-- the reason is that you wade into a quagmire of science mixed liberally with pseudoscience or worse.  It all sounds relatively plausible, after all-- unless you happen to have a good handle on the mechanistic side of HOW allergies and intolerance actually work from a biochemical stance, that is.  Please understand that a lot of PHYSICIANS lack this ability to discriminate research critically.  They really do. 

I worry about this a lot.     This field is QUITE complex enough to take in even many otherwise good (but not "expert") physicians with some of the misinformation which is out there now.

Anyone that promises cutting edge treatment in food allergy (which desensitization most assuredly IS) had better either be publishing peer reviewed papers themselves, or be able to tell you who they communicate with who DOES.  I mean that.  Not ONE reputable American allergist would attempt desensitization for foods otherwise.  It's dangerous. 

Why not just leave you alone and let you post what you like here?  Well, because while your strategy might be fine for someone who does not have IgE-mediated food allergy, an eosinophilic disorder, or some combination of the two... for anyone who does, avoidance is avoidance.  Lives are on the line, and anyone that ignores that imperative does take their life into their own hands.  This is NOT a do-it-yourself project.


Please be cautious drawing connections from peer-reviewed information added to NON-peer reviewed, highly speculative sources. 

http://www.quackwatch.com/01QuackeryRelatedTopics/candida.html

http://www.sciencebasedmedicine.org/naturopathic-medicine-week-2013/

http://www.quackwatch.org/01QuackeryRelatedTopics/gastro.html

http://www.aaaai.org/ask-the-expert/role-of-elimination-diet-in-the-management.aspx

This is a BEAUTIFUL example of what I'm talking about-- total hash of science and pseudoscience here:

http://tastyandglutenfree.blogspot.com/2012/02/its-all-in-family-why-rotation-diet.html

The physician here, reputable or not, internationally renowned or not, is CLEARLY not following best practices in terms of testing and diagnosis.  Skin testing alone isn't enough to "clear" anyone of anything, if a clinical allergy HAS existed in the past.... which in all honesty, it probably did not. 


An example of a GOOD speculative source:

For those interested in seeing how food allergy researchers examine/interpret current research articles, I highly recommend reading a bit here:

http://jaci-online.blogspot.com/

You can see that it's not always as simple as it seems-- but that's peer review for you.  Check out particularly those posts that have four or more comments-- or those which include invited responses from authors. 


Yes, food intolerance is real.  It's also way over-diagnosed by alternative practitioners and even MORE over-diagnosed by laypersons diagnosing themselves.  The problem with that is that real health conditions that are responsible for the symptoms that may be wrongly attributed to food.   This is where I'm worried about people who come here and post a lot of stuff that isn't necessarily related (or all of it valid in a scientific sense), but draw connections between those things.  I understand the need to seek answers, and BOY, do I understand wanting solutions...

Stop and consider for a moment that particular symptoms might be caused by...  contact with water.  Doing a load of laundry. Or getting out of bed.  Or sitting.  WOW-- all of my symptoms happen within a few hours after I do those things.  Possible, right?  In fact, almost seems PLAUSIBLE when you stop and think about it that way for a minute-- because of the frequency of those things.  Well, food is an easy target, too, because we all eat, and we do it a lot.    But this is correlation crossed with selection bias.  This is why self-diagnosis is so rampant and so problematic. 

Obviously-- working with a practitioner is a MUST.  If your situation is complex or strange in some way-- KEEP looking until you find a physician that can give you answers, or at least explain why nobody can do so.  Personally, I feel quite strongly that those with eosinophilic disorders are probably not at all well-served by anyone outside of specialist centers that do a lot of research on the subject.  It's a very complex condition.  I'm concerned that you're working with a practitioner who gave you a blood test, but then didn't seem to adequately follow up with you.  You're still experiencing significant symptoms-- and you have a practitioner who apparently didn't even see fit to conduct a SPT to confirm blood testing results, conduct biopsies, etc-- or refer you to one of the specialist in the field?  This is worrisome.


Fact:

IgE mediation is (currently) one of the few mechanisms of food sensitivity that seems, when studied, to be "real" and reproducibly tied to specific foods or their proteins.

IgE-mediated food allergy is almost always (though not universally) associated with IMMEDIATE reactivity to foods upon consumption, no matter how long the interval between doses, no matter what sort of premedication patients try.  Reach a threshold dose and you're GOING to have symptoms within seconds to about 4hrs (99%) and probably within an hour (90%).

IgE-mediated intolerance to foods carries with it risk of anaphylaxis.  Period. 

SPT has a 95% negative predictive value, but a variable positive predictive one, depending upon allergen, patient history, and immunological status for validity.

RAST for specific IgE seems anecdotally to have a slightly lower negative predictive value. 

Combining RAST, SPT, and patient history (food diary) with in-office food challenges leads to the best diagnostic picture, and is considered current "best practice" in diagnosing food allergy.


Luark, I promise that I'm not picking on you, I'm not suggesting that your problems are not real, and I'm not trying to attack you-- only to point out that the things you are posting here (experimentally trying your own method of desensitization, for a diagnosis which isn't even clear) are potentially DEADLY to most of the people who find themselves reading here.  Desensitization is NOT something that patients or parents should be "experimenting" with by themselves. I just want it to be clear that this is NOT NOT NOT a good idea for anyone that has probable or confirmed IgE-mediated or systemic history with any food allergen.

[twinturbo]

There's also a video link to Nancy T. Chang, Dr. Chang's wife and fellow researcher at Baylor. She talks briefly about how difficult it was to get funding to develop Xolair because in theory it should induce anaphylaxis in every patient. It paradoxically prevents anaphylaxis in most patients and can help with co-morbid conditions that are part of allergic disease, again because it affects root mechanism. How exactly and to what long term effects is why I follow Dr. Chang's continued research. The name of this game is root mechanisms and *preventing* further sensitization... something desensitization per allergen has no effect whatsoever on. Unfortunately. Same for symptom treatment.

[luark]

If your allergies are IgE-mediated, Xolair would improve them. 

Not necessarily true.  IgE antibodies get generated locally, and Xolair doesn't necessarily get into the tissues in sufficient concentrations to affect the allergic reaction. 
When they did that study with Xolair in desensitization of systemic peanut allergies, they used much larger amounts than people would normally get, I think. 

Allergists talk about "cyclic food allergies" that develop from eating too much of a food.

Not the reputable sort, they don't.  OY. 

I don't know anything personally about "cyclic food allergies", so I can't comment.  But, simply saying "it's not reputable" doesn't work as an argument.  They were board-certified allergists and allergist/ENTs.  Not naturopaths. 

this is an area where the science gets very very fuzzy in a hurry because (bluntly) there are SO many quacks operating that it all turns into hash

I agree.  BUT this does not mean I was citing pseudoscience.  I went out to look at what the scientific evidence says about this kind of food allergy.  There's much more that I didn't mention.
And yes, some delayed food allergies do pass double-blind placebo controlled food challenges.  That's what researchers are interested in. 
If you actually look at the articles I cited, they are not at all pseudoscience.  Nor is Dr. Scot Lewey a quack.  He's a gastroenterologist trying to DO something in a fuzzy area about which little is known.  I would be seeing him if I lived in Colorado. 
It seems like I touched a pre-existing nerve ... But I'm not into quackery either. 

Not ONE reputable American allergist would attempt desensitization for foods otherwise.  It's dangerous. 

I'm talking about desensitization for delayed food allergies.  That's in the title.  I'm not talking about desensitization for systemic food allergies, or proposing that anyone try it at home. 

your strategy might be fine for someone who does not have IgE-mediated food allergy, an eosinophilic disorder, or some combination of the two... for anyone who does, avoidance is avoidance.  Lives are on the line, and anyone that ignores that imperative does take their life into their own hands.

OK, warning well taken. 

[CMdeux]

Okay, so where does your info about "cyclic food allergy" come from, then?   I was matching my anecdote to your own, I suppose, and with the understanding that I've been living this way for about 14 years at this point, during which time I've had contact with four different board-certified allergists directly, and several others indirectly.   I'm merely stating that as far as I can tell this is REALLY not legitimate current practice at all-- and I actually ASKED two different board certified allergists about rotation diets when my DD was tiny because I was worried about her developing MORE food allergies... which she seemed to do at a pretty nasty clip... and was told in no uncertain terms that Doris Rapp was an EVIL woman, and that I should burn that book and forget I ever saw it by one of them (the one that lived with food allergies at home, I might add) and a major eye roll from the more stoic allergist, coupled with a "No-- no validity, never was."  Both allergists seem to be completely, astonishingly competent and thorough in almost every conceivable way, so I do tend to trust them on that issue.

The most recent legitimate reference that I can find to "rotation diets" by reputable allergists is a Sami Bahna reference from 1984.  Now, ask yourself-- do you think that treatment which was not ever mainstream THEN is a good idea NOW?  (And this doesn't address Dr. Bahna's overall reputation with his colleagues, which is... er... well, not entirely glowing, let's just say.  In the past six years or so alone, he's made several very public, jaw-dropping gaffes re: food allergy in particular, and clearly has an axe to grind on the subject.  One not-so-flattering assertion that I've heard elsewhere is that most food allergy researchers consider him a loose cannon and a nutter.  He has had disgusted colleagues walk out on his talks at national meetings.  Truly.)

Phil Lieberman is his usual conciliatory self here, but his position is pretty darned clear anyway:

http://www.aaaai.org/ask-the-expert/role-of-elimination-diet-in-the-management.aspx


More on this momentarily, but it's tied up with IgG now in the Woo community, so hang on for a slight diversion.

IgG and allergy.  Oh boy.  This is quack territory.  Seriously-- so little of that is legitimate.  Yes, there is research on IgG and immune modulation.  But it's not anything like "elevated IgG = "different" kind of allergy to that thing."  More like tolerance and exposure.
THIS is pure, unadulterated quackery, and it is what I am worried you're mixed up in:

http://meridianvalleylab.com/igg-allergy-testing

See how reasonable parts of it sound?  That's what I mean about blending baloney with real science and medical practice until the two things seem indistinguishable. 



GI docs are really not qualified to address IgE-mediated allergies.    Either to diagnose OR to eliminate them.

Not unless they are ALSO board-certified allergists-- or consult with a good one.  There are some who do. 

So if there's a specialist that you WOULD see if you were local, why don't you make it a point to get a referral to that person anyway and travel to see him?  You health, right-- isn't it worth it?? 

As noted in your parallel thread-- I have deep concern that you have NOT had an adequate work-up to determine exactly what it is that you're dealing with.  If you've got a previously undiagnosed IgE-mediated allergy-- or an eosinophilic disorder-- or celiac-- then tweaking with small doses of allergens is quite possibly a very bad idea, no matter what medications you're taking.


More about Xolair and food allergy:

http://www.medscape.com/viewarticle/776984

http://allergicliving.com/forum/viewtopic.php?t=839

Hardly cutting edge stuff at this point, but the point is that this is a VERY well-known impact of treatment.  I know of two members here who experienced this widespread improvement themselves-- though the effect was all-too temporary.  There was also concern that xolair withdrawal later might cause a rebound effect on food-specific IgE.  (later this has mostly been shown to not be the case-- IgE may recover, but doesn't seem to be ELEVATED relative to baseline).  IgE circulates in plasma-- this is how it gets picked up on a RAST.  If it's not extracellular, then it can't really bind to mast cells, allergens, or the xolair, either.  So yes, xolair scavenges IgE-- it's not discriminate, and this is why practitioners often titrate by evaluating IgE levels to establish a maintenance dose of xolair for an individual patient.  It has to remove ENOUGH circulating IgE to be effective for allergic asthma, after all.  So really, I'd be quite hopeful on that score.  But I'd also want to discuss it with an allergist-- what happens if you have to go OFF of it?  How much risk are you at for anaphylaxis while on it?  Should you carry epinephrine?

  http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2010.02362.x/full

http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2007.01476.x/full



 

[Macabre]

I'm talking about desensitization for delayed food allergies.  That's in the title.  I'm not talking about desensitization for systemic food allergies, or proposing that anyone try it at home. 

But IgE-mediated allergy reactions can present at 20-30 minutes (it's always 20 minutes for my sesame reactions) or rarely later (my GI shellfish reactions hit at 2 hours). I've had anaphylaxis with both.

Just because a reaction happens after 30 minutes doesn't mean it's not IgE-mediated.

[CMdeux]

Right-- your reactions are occurring within the right time-frame to be plausibly IgE-mediated.

Blood RAST levels may be equivocal or even zero in truly allergic individuals-- we have more than one adult in this precise situation within this community already.  With ample anaphylaxis history to the allergens, and positive skin tests (though even those were negative at one point).

Your symptoms are also quite plausibly IgE-mediated.


Even if it's NOT IgE-mediated (and as noted by Mac and myself, I'm not sure that you've ruled it out very well, which is essential for your safety), it could quite easily be: a) celiac, or b) an eosinophilic disorder.  Both of those are also completely plausible.

Nothing that you have posted seems to support a clear pathway through rigorous differential diagnosis.  This is worrying given how different the treatment of each of those three options must be under current best practices.  That is only my layperson's guess at what COULD be causing this, as well-- it could be a number of other things that aren't even related to food, too-- ovarian cancer, lupus, atypical MS, etc. etc. etc.