Every additional mystifying, contradictory and nonsensical sentence makes my head hurt even worse.


That's as polite as I can be with this at this point in time.   

I hope that NOBODY reading this who has been diagnosed with food allergies takes this "method" seriously.

Well, I'm seriously confused by "I trust my doctor and I'm doing this with his/her supervision and encouragement" combined with "I've had to figure all of this out myself because physicians have been useless..."

Which is it?



It's not personal, but this probably isn't the kind of community that can offer a lot of meaningful support for a person without a healthy respect for and experience of IgE-mediated allergic disease.  It's our focus.  Now, can we help you with recipes?  Almost certainly.  Your dismissive claim that your situation is "not as simple" as "just avoiding" one or two things means you haven't spent much time around here, I'd say.   But please DO NOT make claims that "small amount of the allergen" are a GOOD IDEA for people with food allergies.  Not in this group, they aren't.  There are exceptions, but they are VERY limited and absolutely not at all like what you are conjecturing.

Perhaps you should try one of the support groups below?


http://apfed.org/drupal/drupal/Support_Groups

http://www.glutenzap.com/forum/index.php

They might have a mission more in keeping with what you are considering.  I really don't know much about celiac, but probably as much as gluten-free celiacs know about food allergy, I guess.  You're convinced that your symptoms are of some other immune type, however, so celiac is my point of reference for that.

However, the main point here is that eliminating a lot of foods completely, may be bad for one's immune system, not good for it!
It is not the same as systemic food allergies where you have only one or two allergens that you have to avoid.  I've had to avoid almost all common foods - and almost all allergenic foods!   I'm avoiding ALL of a list of "top 20 food allergens" that I got from an allergist years ago - because I'm allergic to ALL of them!
The body does things to control the allergic response when allergens are ingested.  Those things include making anti-inflammatory cytokines and other ways of suppressing allergic reactions, such as making IgG antibodies.
And not challenging that oral tolerance mechanism, not getting it to work, may be bad for one's immune system long-term.  I think I quoted an article which suggested this.

I believe in the "rotation diet" because it has worked for me.  I have almost never developed new delayed food allergies to foods I eat only once every 4 days.  And I HAVE often developed new delayed food allergies to foods I was eating often. 
I couldn't care less if it's "alternative" or of bad repute somehow. 

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

Your symptoms are also quite plausibly IgE-mediated.

I've had many allergists tell me quite confidently that my symptoms aren't those of systemic food allergy.  I had a lot of IgE RAST blood testing for food allergens in 2008 and it came back totally negative. 
Calling what I have "delayed food allergies" is something of a misnomer.  They're only delayed compared to the kind where people react within minutes or seconds.  But I don't have a better name that doesn't make an assumption about the mechanism - which is unknown.

I agree that starting to feel sick in about 1/2 hr after eating the food, is quite consistent with an IgE-mediated reaction - which is why I was talking a lot about the possibility that my kind of food reaction might be a localized IgE-mediated allergy.   Since cromolyn and other allergy meds help. 
Another possibility is the FLC's I mentioned.  Immunoglobulin FLC's are found in many inflammatory diseases, but it's been discovered recently that Ig FLC's can be specific to a particular allergen - and mediate an immediate hypersensitivity reaction similar to IgE-mediated reactions. 
I also have had localized inhalant allergies - which also makes me think that possibly I would be more likely to have a localized IgE-mediated allergy in my gut. 
The localized inhalant allergies, "local allergic rhinitis" as I mentioned - have been a horrible story.  I was living with my dog in my house, with extensive mold in one of the walls for years.  I slowly got sicker and sicker, with what felt like my inhalant allergies.  But over that time, my skin & blood allergy tests gradually went negative!  Allergists were telling me I was getting over my allergies!  I looked for causes besides allergy, but this was mostly a waste of time and money.  They did find out I have Hashimoto's (autoimmune thyroid disease), and I wasted a year hoping that normalizing my thyroid levels would make me well. 
Slowly, I figured it out.  And I had to do this on my own, the doctors were no help.  I eliminated a source of mold in my food that had been making me sick.  Then, I went to a no-pets motel (which is good about no-pets), stayed there a week, got well, exposed myself to dogs at the SPCA for several hours, got severely sick.  I tried the same experiment later with a much more minor dog exposure, also got sick.  So I know I have a dog allergy. 
I moved to a new mobile home - no dogs here, ever - and after intense avoidance of inhaled allergens, I recently got allergy testing for inhalants again, and my allergy tests are now positive again!  Partially.  Some things I'm sure I'm still allergic to, didn't show up on the tests. 
I had thought that my allergy tests going negative, was likely because of the chronic exposure.  It was actually a bad sign, not a good sign.  I got this idea from the Entopy paper that I referenced.  Quote:
it could be postulated that there is a reduced amount of IgE available for overspill into the systemic circulation in the nasal mucosa due to a combination of reduced IgE production and increased uptake because of elevated numbers of mast cells, possibly accounting for the absence of atopy in some patients
Chronic exposure to allergens changes the tissues in the nose, including more mast cells to take up IgE.  So according to this paper, this could actually cause less IgE in the blood. 
As for checking out other possibilities - if you know of some disease that causes people to have an immune system breakdown such that they develop allergies to many, many things - let me know.  I've asked my allergist about other weird possibilities, like Wegener's or some kind of immune system cancer, and he didn't know of any.  I've gotten what testing my family doctor could think of, also.  Tests for lupus etc. 
However, I'm quite sure that I do have those allergies, both to foods and inhalants.  I'm very careful about doing elimination diets and food challenges, and with the reaction starting about 1/2 hr after eating the food, I'm not likely to mix it up with something else.  The reaction comes on fully about 4-5 hrs after eating the food.  I have done those food challenges many, many times. 
A couple of times, I've thought it was a food reaction when I was actually coming down sick with a bladder infection - or vice versa.  The symptoms are rather similar, but it becomes clear after a few days which is which. 
I've thought I should find a gastroenterologist who knows about food allergies.  These "delayed food allergies" are something that should be in a gastroenterologist's domain.  I might have extra mast cells in my gut, and perhaps an intestinal biopsy would show something useful.  I do get quite sick when I travel because of my extreme dog/cat allergy though.  It's a big deal to go to NYC to see my allergist, and I would get very very sick if I were to go to Colorado.
It's possible that what happened to my nasal allergies with chronic exposure is similar to what happens in the gut with chronic exposure to foods - perhaps, extra mast cells created with chronic inflammation, localized allergy ...
Yes, I realize that "IgG food allergy" is a trigger for the BS alert.  But IgG immune complexes could play a role in "delayed food allergy" symptoms anyways. 
I'm just saying that:
- IgG does seem to have a role as a "blocking antibody", i.e. forming immune complexes with food antigens so they can't react with IgE.
- Immune complexes can cause problems in the body when they're out in large numbers
- Celiacs do often have joint pain and probably other symptoms of immune complex disease.   
- I looked up symptoms of "serum sickness", which is caused by immune complexes, and they were quite similar to my food reactions in many ways. 
- It makes sense, though I don't have evidence one way or the other, that people with celiac disease & the high intestinal permeability that results, would have lots of immune complexes in their blood, which end up in their joints and cause joint pain. 
- I had much worse food reactions in the first year or two after I quit gluten, than later.  I don't have joint pains from food reactions now, for example.  So it seems reasonable that the much worse food reactions, were worsened because I was making lots of immune complexes, had high intestinal permeability, etc. 
So yes, that part about IgG immune complexes causing symptoms in delayed food allergy is speculative, but not unreasonable.
It doesn't imply that IgG blood tests for allergy or blood tests for immune complexes are reliable as allergy diagnostic tests.   
I cited a paper about abdominal ultrasound that was done on people with food hypersensitivity.  That was an attempt at establishing a diagnostic test. 
About Xolair and food allergies - Xolair is a large molecule, and indeed it may not get into solid tissues very well.  IgE can be generated locally in tissues, as explained in the Entopy paper.   
Keep in mind that what I'm talking about is chronic inflammatory stuff - NOT the occasional food accidents with possibly severe consequence, that you have to beware of.  What is actually going on is significantly different. 
Yet similar in some ways. 

I DON'T think I'm in any immediate danger from taking tiny amounts of these foods.  I told my allergist what I'm doing of course - he's the one who prescribed the cromolyn for me.  Yes I have an epi-pen because I'm getting Xolair.  But I've never used it. 
By the way, gastrointestinal food allergies (i.e. GI symptoms) are listed as one use for oral cromolyn in the drug info for Gastrocrom.  The main use is for mastocytosis, but food allergies are a secondary use. 

The risk I'm taking with my food desensitization efforts is that I might be doing it the wrong way.  I've been asking myself - what if the allergy meds I'm taking before the food I'm allergic to, interfere with gaining tolerance? 
So far as I understand the process of oral tolerance, they probably won't.  The article I cited titled "Food Allergy" gave the currently-known picture of how oral tolerance works, and it didn't sound like inhibiting mast cells from degranulating would interfere. 

As for "cyclic food allergies" - likely enough, I heard about them at various allergists' offices. 
They are doctors, and I respect their clinical experience enough to think they may be right.  I have to put it in that "unknown" territory, because those are not the kind of allergies I have or have read about.  The "cyclic food allergies" are supposed to go away in a few months if you don't eat the food.  I don't know about any evidence pro or con. 
If some other doctor doesn't believe in them - well, doctors vary in their clinical experience and in how skeptical they are about what patients tell them, and how much they listen to subjective symptoms.  Some doctors are comfortable with taking subjective symptoms seriously, some aren't. 
There is also a BIG problem with doctors not keeping up with research!  The allergist I see does a pretty good job of keeping up to date.  But with most doctors, like other human beings, like to kick back after work and many of them don't do anywhere NEAR enough reading medical journals.  I have been truly shocked by how out of date many doctors I've seen, have been.
So I definitely do not take doctor's word for it about the current state of research!  I would tend to believe a medical researcher, talking about their own area of research.  But not doctors in general. 

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.

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. 

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.