Desensitization for delayed food allergies

[luark]

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. 

[Janelle205]

I will say that I have heard about 'cyclic food allergy' from a board certified allergist who suggested a rotation diet to me to 'keep me from developing more allergies'.  I saw this allergist after my first allergist in the area closed his practice without giving any referrals. 

When I began seeing my current doc, while they didn't say anything particularly bad about this doctor, they did remark that they were getting an awful lot of patients that saw my first allergist, went to a few appointments with other doc, and then switched.

This doctor also gave me a lot of other wacky advice in regards to my asthma (severe, refractory) that directly contradicted advice that I had been given by pretty much every other doctor.  One thing that he told me was that I was NEVER to take more than two puffs of my rescue inhaler - something that I had been advised to do since I was about 10.  His opinion was that if you need more than 2 puffs, call 911 and wait for the ambulance to show up.  Not only would I have been calling for an ambulance more than once a week, but at that point I lived over an hour from the nearest ER and 15-20 minutes from ambulance arrival on a good day.  I can remember multiple circumstances where if I had followed this advice, I definitely would not have made it until the EMTs showed up.

[luark]

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. 

[twinturbo]

Are you trying to convince other people of this? If so, who? If not, then what? You already know what we deal with in regard to IgE-mediated allergy. I'm completely confused, scout's honor.

[CMdeux]

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.

[Macabre]

Hey luark--you haven't been taking proton pump inhibitors by chance have you?

There is research that suggests (but insist thing there is a conclusion) that there may be a link between them and the development of food allergies.

I am interested in the possibility, because I was on them when I developed my FAs and DS was on them as a baby for reflux.

I honestly don't know what to make of them.

But it's a thought.

[CMdeux]

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.

[lakeswimr]

I do not think that you can desensitize yourself to food sensitivities.  Desensitization for food allergies is currently still in trial stages and not something to try on one's own outside a medical facility with the help of an experienced allergist.

Allergist do not think that food allergies come from eating too much of a food but naturopaths and other alternative practitioners often say that.

Cyclic food allergies do not exist in my opinion and in the opinion of allergist.  Naturopaths will often claim they do.  I do not believe in them.

What foods cause you reactions?  What type of reactions do you have?  How soon after eating do you have the reactions?  What type of doctors have you seen for these reactions?

Eating foods to which one is allergic (meaning the epi pen type of allergy) is generally very dangerous and not recommended with some complicated to explain exceptions.  Avoidance may make a food allergy (IgE allergy) worse, but it is the only way to prevent a reaction. 

I do not believe in food rotation diets.  I do not think they prevent allergies.  I think they are wasted effort and something I see only recommended by naturopaths and other alternative practitioners, not by mainstream doctors. 

If you have an IgE food allergy your symptoms would start within minutes to up to 2 hours of ingestion almost always as in 99.99999 percent of the time.  Close to 99% of the time they would start within 30 or 45 min of ingestion.  You would have things like hives, difficulty breathing, GI problems, tightness of throat, swelling, itchiness, etc.  It wouldn't generally be something so mild that you wouldn't know you had it.  Do you get those types of symptoms? 

There are many other food related conditions, some that are equally serious (some that are also life threatening such as FPIES) for which you generally see a GI doctor.  Most are not life threatening but every bit as real as an IgE food allergy.  They are not cured by exposure to the foods.

Depending on what reactions the person has, 30 min would not be considered delayed for IgE food allergies. 

Honestly, if you are not seeing consistent reactions to a given food and you sometimes eat it without reaction then you do not sound like you have an IgE food allergy.  It could actually be partly psychological.

The likelihood you developed an IgE food allergy as an adult is certainly possible.  The likelihood of a person being allergic to nearly all foods is about zero.

If you have been avoiding almost all common foods for more than a few months you probably have some serious nutritional deficiencies unless you have been working very closely with a very good registered dietitian (and even then it would be very difficult to avoid being nutritionally deficient) which could be causing your symptoms.  Have you had a blood test to test your levels of things like vit d, ec? 

ENTs generally do not know food allergies well.  Not all allergists are well versed in food allergies and it doesn't sound like the doctors you are working with are good. 

The symptoms you describe could be from lots of other things. 

A lot of people here avoid more than just one or two foods.  My child avoids a lot more than that but a heck of a lot less than you avoid.  There are people with IgE food allergies who are on formula only. 

If you are truly allergic to all those foods you could survive on hypoallergenic formula but you would not get that except from a very good GI doctor.  I suspect that you are dealing with something else, though. 

A lot of people who think they have 'food sensitivities' actually have other things that are not getting diagnosed because of the false diagnosis (such as celiac, lactose intolerance, IBS, EOS, other GI conditions, reflux, etc, etc.)