Desensitization to food allergens (rewritten)

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://www.medscape.com/viewarticle/711404_6

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

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 strictly eliminating 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 reaction.

I found that taking oral cromolyn, Singulair and 15 mg loratadine beforehand, makes 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 trying.

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 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.
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 may be 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/bitstream/handle/1874/221010/groot-korm... 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.

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. I found out about my "delayed food allergies" by a series of elimination diets followed by food challenges.

As I've said before, I went through a kind of revolution starting in 2003, when I found I had been severely affected both psychologically and physically by food allergies. The allergies caused psychological hypersensitivity, LOTS of anxiety and depression, etc. Physically, they caused various inflammatory effects.

It was a very dramatic change for me when I stopped eating those foods – the physical symptoms went away and I felt like a different person, psychologically.

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.

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.

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Comment by Luara on February 10, 2014 at 9:49am

I have been trying desensitizing myself to foods for about a month now.  Any given food, I've been eating once ever 4 days, in ~10 mg amounts, after taking cromolyn, Singulair and 15 mg loratadine.

It does seem to be working!  At least, the hazy feeling from the foods mostly fades away after about a month of doing this. 

Hopefully in time, this will get rid of my delayed food allergies and I won't have to live on an exotic foods diet any more. 

I'm also trying to desensitize my dog allergy this way.  I asked one of my ex-neighbors who has a dog, to rub a piece of towel that I sent him, on his dog.  Also he sent me some dog hair in a ziplock baggie. 

So cautiously, to avoid an inhalant allergy reaction, I've been pulling threads out of the piece of doggy towel.  The pieces of thread are a bit shorter than 1/4", each one weighs maybe a milligram.  I put the piece of thread onto a drop of honey, to keep dog allergen from getting into my nose - and eat the drop of honey with the thread.

And this gives me a pretty intense reaction, even with the allergy meds!  It makes me feel out of it, like going to sleep, not thinking very well.  And I'm getting maybe a microgram or so of dog allergen this way. 

So I am really very sensitive to dog allergen!

It has been a weird experience, being so sensitized to dogs.  I'm at risk of having allergic reactions whenever I go grocery shopping, because people carry dogs around in their cars.  If I'm 50 feet downwind from a car with a dog in it and the window is open, it will make me sick for days.  A couple of times I've had to run out of stores because someone brought a service dog with them. 

So I need desensitization very badly, to live even a semi-normal life. 

I'm also going to be getting allergy shots, with dog, cat and some other allergens in them. 

I asked my allergist if he could give me some dog allergen extract, suitably diluted, so I could also take it by mouth to get desensitized.  Eating threads from the towel gives me an idea of what concentration of allergen to start with.  So I'll be discussing that with him. 

I like this allergist because he's willing to be kind of experimental.  I need that because my problems are just starting to be researched.  But he's also science-based and I think he won't do unacceptably risky stuff with me.  Most allergists do things "by the book", and it has been horribly unhelpful for me. 

I wish I'd started doing this oral desensitization a long time ago.  It's something that's reasonable if you know how the immune system works to regulate allergies. 

So my reading of research articles on allergies has helped me.  I've been told that I should just let doctors take care of my medical problems - but with my allergy problems, self-help has been crucial in several ways.  I really wish allergists had mentioned this idea to me, but even my good allergist didn't. 

Oral desensitization - simply eating the allergen - is thought not to work for allergic rhinitis in general.  That's because the allergen is digested by stomach acid.  Sometimes people swallow the allergen enterically coated, so it reaches their small intestine intact - that's where a lot of the allergic reaction occurs. 

Some people swear that eating local unfiltered honey helps them with their pollen allergies.  Honey has some pollen in it, less than 0.1%.  Most of that pollen is from the flowers the bees visit.  The pollens that give people allergic reactions in the spring, are from wind-pollinated plants.  Pollen from insect-pollinated plants is heavier and doesn't float in the wind. 

But, honey attracts some wind-blown pollen just because it's sticky.  So honey has some grass pollen etc. in it. 

However, a study on immunotherapy with unfiltered honey showed no benefit.

I do have reactions to unfiltered honey, so I figure eating it might help me with pollen allergies, even if it doesn't actually help most people.  So I'm eating small amounts of unfiltered honey along with the other foods.  Maybe that will help me feel better in the spring. 

Or, immunotherapy may be done by giving allergen as sublingual drops, to be held under the tongue.  This may be a more intense exposure than simply swallowing it, because it hasn't been attacked by stomach acid.

But for me, simply swallowing food allergens does cause a reaction.  Even if the 10 mg of food is buried in an amaranth pancake, so my mouth isn't exposed to it. 

Comment by Luara on January 16, 2014 at 4:13pm

Oh! Luara! No! Don't eat dog hair! Ugh!

I don't know why not :) 

Look, one allergy treatment involves eating worm eggs.  I would do that too if I were sure it would work.  It would be a tiny amount of dog hair, that's why I'm not bothered. 

But what that abstract from the article said - is that they theorize that allergies are increasing because people are avoiding foods.

They were talking about allergic eczema in children - but the idea is the same as what I blogged about!

That is, that avoiding foods one is allergic to completely may be a bad idea - rather, one should do desensitization by being exposed to the foods. 

This is what I'm trying with foods, and planning to do with dog hair or a cloth that's been rubbed on a dog. 

Avoiding the food completely is the older  idea.  As I wrote above, researchers have had good success with desensitizing people to classical food allergies, by exposing them to tiny amounts of the food. 

That's the idea of this blog you see - that the gut is crucial for developing tolerance to allergens.  Both inhaled allergens and food allergens. 

And, avoiding foods completely interferes with this tolerance mechanism.

Comment by Joan Denoo on January 16, 2014 at 3:49pm

Oh! Luara! No! Don't eat dog hair! Ugh! 

As so food allergies rising, yes, I have read that, too, and keep asking doctors about what suspects are they looking at for cancer. I would ask the same of doctors treating allergies. Something environmental is happening. 

I have never had food allergies, however several very close friends have. They began their searches, after getting the allergy tests, by stop eating anything suspect for a period of weeks, then try one mouthful of a suspected food and observe how their bodies reacted. After that one was settled one way or the other, they tried food suspect #2, etc. until they finished their lists of suspects. This process worked for them. 

Saying all this, I have to confess I lived on slaughter house piles and floors for the first four years of my life. I was in the slaughterhouse and butcher shop all day every day. I have no allergies. Go figure. 

Comment by Luara on January 16, 2014 at 10:21am

This - from an article on Medline - is what I'm talking about!

The prevalence of food allergy and anaphylaxis in children is reported to be increasing in recent years. Evidence suggests that exposure to large doses of antigen might produce a suppression of the specific IgE response, so that the continuous contact with high doses of antigens favours the maintenance of tolerance In the same way loss of contact with allergen in children with specific IgE reactivity may favour a loss of tolerance with development of systemic reactions, while a progressive new contact with allergen may favour a specific tolerance induction. We hypothesize that widespread and uncontrolled use of elimination diets for atopic dermatitis may have played a role in the increase of allergy and anaphylaxis. Specific oral tolerance induction may be a possible therapeutic strategy.

Comment by Luara on January 15, 2014 at 6:17pm

I had an interesting thought - I might be able to desensitize myself from my dog allergy - simply by eating small amounts of dog hair or a cloth wiped on a dog. 

One of my neighbors has a dog, I emailed him and asked him if I mailed him a cloth, if he could wipe it on his dog and mail it back to me.  He said sure.  He isn't literally my neighbor anymore, he lives next to the house that I can't live in because I'm too allergic to it. 

Or maybe I'll ask him for some dog hair when he brushes his dog's fur :) 

I've been eating some of the foods I'm allergic to, in tiny quantities.  10 mg usually, I have a small scale.  I eat any given food only once every 4 days, because that seems to be a good idea with this kind of food allergy. 

So I would do the same with the dog hair or whatever.

It sounds a bit gross, but I would only eat a tiny quantity.

They do allergy desensitization with sublingual allergy drops sometimes.  That is done in a different way - taking the drops every day, several times a day. 

I tried allergy drops once.  I spent thousands of dollars on allergy testing and them making the drops - only to find out that I had one of my food reactions to the drops.  Even though I did everything I could to avoid swallowing any of the drop - swishing my mouth out with water and spitting it out after letting it sit under my tongue - I still got sick from it, physically and emotionally. 

I got allergy testing and the allergist is willing to do allergy shots - but I've been having a frustrating time.  My family doctor's office does allergy shots - but I'm very worried when I go to their office that someone will walk in with a service dog and I'll get sick for days.  I walked into his office for an allergy treatment last August, asked if any dogs had been there.  The receptionist said yes, a dog had been there earlier.  I rushed out, but I was still quite sick for five days after that. 

I asked my doctor to arrange things so I would get there early in the morning and any people with service dogs would come in later, but he said he couldn't do that.  They can I'm sure, and so far as I know they have a legal obligation to. The law says that people with allergies and people with service dogs both have to be accommodated.  But, I can't take the time for a prolonged back and forth about it.  So I'm casting about for other alternatives.

This medical practice has generally been good to me - but it's very harsh - and bad for my health - to be in danger of a severe allergic reaction every time I go there. 

Comment by Luara on January 13, 2014 at 8:46am

"chemo-brain" and "allergy-fuzz" result in pretty deep fogs. 

When I was sick for 4 years without knowing why - I was quite out of it. I compared it to being at the bottom of a deep well, watching people's lives go by, up on the surface. I spent a lot of time surfing on the internet, watching videos. It gradually got worse over years.
I'm not that out of it any more but I'm still fuzzy often from allergic reactions.  The tiny amounts of food I eat that I'm allergic to, make me slightly out of it but it's not as bad as an inhalant allergy reaction. 

Comment by Joan Denoo on January 12, 2014 at 6:51pm

Luara, I think you are probably correct. "chemo-brain" and "allergy-fuzz" result in pretty deep fogs.  

Comment by Luara on January 12, 2014 at 5:50pm

the only distress I can really remember is when I was on the "Killer Chemo" last year.

I suppose you've had "chemo-brain" then.  I haven't but I imagine that's similar to the fuzzy head from allergies.

Comment by Joan Denoo on January 12, 2014 at 5:46pm

Luara, I certainly hope things work out for you and you can have a healthy, happy, gastric life ahead. 

I have never had these problems; the only distress I can really remember is when I was on the "Killer Chemo" last year. It knocked me of my feet for a while, and I am back to normal again.

 

Comment by Luara on January 12, 2014 at 5:19pm

Joan,

There's my attempt at desensitization - I don't know if that will work or not.  I'm doing that - eating 10 mg or so of a food I have an allergy to, after taking various allergy medications.  It makes me feel slightly sick but not it's tolerable.  What I was wondering in this blog is whether my attempt to get better by totally eliminating a wide variety of foods I have allergies to, may have been bad for me long-term. 

Otherwise, the cultured fruits and vegetables; I may start taking a commercial probiotic.  The commercial probiotics all have traces of foods that I'm allergic to, but that may be OK, with the allergy medications. 

Also I'm getting Xolair, that's antibodies to IgE.  It may help over time, but it's experimental. 

And maybe allergy shots for my inhalant allergies. 

I don't know if there are doctors around who could help me more than the doctor I have.  There's an osteopathic gastroenterologist in Colorado who seems knowledgeable, I would be seeing him if I lived around there. 

I think this might have built up for me over time - with a bad diet, a lot of courses of antibiotics, being exposed to mold in my house for years, etc. 

I was sick without knowing why for about 4 years - so I literally had an allergic reaction that went on for years solid ... that really messed me up.  So over time I hope things will get better :)

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