Desensitizing The "other Food Intolerances"

[Laura Wesson]

I call the "other food intolerances"  "delayed food allergies" instead.  This is appropriate because this kind of food reaction is acquired, specific, and can be triggered by a very small amount of the food, on the order of a milligram or so.   I start to feel kind of hazy about half an hour after eating the food, and the mental fog/sludge comes on fully about 4-5 hours after eating, and lasts a few days.  There are other symptoms, the most onerous other symptoms are emotional hypersensitivity, anxiety and irritability.
Also, this kind of food allergy tends to be associated with other allergic conditions, such as inhalant allergies, allergic asthma, allergic dermatitis.  I have horrible inhalant allergies.  
I have a LOT of delayed food allergies, so many that my diet is rather limited and I have to take supplements to take care of my nutrient needs; and I have to get my medications compounded without the usual fillers because of my milk and corn allergies.  
Gradual desensitization by eating tiny amounts of the food, has worked for the kind of food allergy that's IgE-mediated and can cause anaphylaxis.  It's still a technique that's pretty much limited to research settings, but gradually the mentality about these "classical" food allergies is changing from one of strict avoidance to desensitization.  Strict avoidance of these foods can kill people, because they become much more sensitive once they are carefully avoiding the food, and an accidental exposure can kill them.  
I've read a lot of the research articles on delayed food allergies.  They are called by different names in the research - non-celiac wheat sensitivity, often  associated with multiple food hypersensitivities; food hypersensitivities associated with IBS (irritable bowel syndrome); gastrointestinal food allergies.  Most of the research on adults is on food allergies that cause  diarrhea/constipation, because researchers like to deal with objective symptoms.  There's a good deal of research on non-classical food allergies such as FPIES (food-protein induced enterocolitis syndrome) in babies and young children, but I don't know if those allergies in children have the same mechanism as  the delayed food allergies I have.  
The mechanism for delayed food allergies is unknown.  They are often described as non-IgE mediated.  But they could be IgE-mediated, but localized in the gut, so the IgE antibodies to foods don't show up in the blood.  The mast cells armed with food-specific IgE might migrate from nearby lymph nodes to the gut lining.  
People's intestines are designed NOT to have food hypersensitivites, because the gut has to handle large amounts of foreign proteins.  It's very maladaptive to have food allergies.  So there are a lot of mechanisms in the gut to prevent food allergy.  
I found out from reading about how tolerance to foods is established in the gut, that it happens by being exposed to the food.  The body "masks" delayed food allergies when someone is eating the food regularly, so they don't feel too sick, although they may have symptoms that they don't associate with the food.  After quitting the food completely, they can get quite sick from milligram amounts of the food.  
But this "masking" process is part of an attempt by the body to get over the allergy!  Somehow the mechanism for developing tolerance to foods becomes overloaded when people have a delayed food allergy.  Perhaps because of chronic inflammation in the gut, an excessively leaky gut, or whatever.  
It seems that quitting foods that one has a delayed food allergy to, may actually delay developing tolerance to the food.  
And, I think quitting foods completely may interfere with the mechanisms in the gut that regulate the immune system to turn it away from Th2 (antibody-mediated) responses.  The gut is a very important part of immune system regulation.  I read that inhalant allergies are regulated partly by the allergens going into the GI tract.  After the allergens go into your nose, a lot of them will end up washing down your throat.  
So it may be that my very restricted, very hypoallergenic diet has actually made my inhalant allergies worse and perpetuated my delayed food allergies.  
SO, I've been trying gradual desensitization with my delayed food allergies.
I've found that taking allergy medications before eating these foods decreases the reaction a lot.  I don't get as much mental fog and it doesn't last as long.  Also, I don't get the emotional hypersensitivity, irritability and anxiety.  I've been taking oral cromolyn, Singulair and loratadine (Claritin) before eating the foods.  Oral cromolyn is normally hugely expensive, but I found a compounding pharmacy that will supply it to me for $180/month.  I take the oral cromolyn half an hour before eating, and the Singulair and loratadine an hour before the cromolyn.   I take 400 mg cromolyn, 10 mg Singulair, and 15 mg loratadine.  It would be unbearable to eat these foods without the allergy medications beforehand, because they mess me up emotionally a lot and make life very difficult.
I have been eating about 10 mg of the foods to start with.  I have a mini-scale that goes down to about 10 mg.  I've re-introduced about 15 foods in these tiny quantities.  
I don't plan to re-introduce any gluten grains, but I have started eating tiny amounts of milk.  So far, about 50 micrograms of dry milk.  I dilute dried milk in water to measure out this tiny amount.  The casein in cow's milk cross-reacts with gluten, so this might help me get less sick from any gluten accidents.  
Any given food, I've been eating only once every four days.  I've "rotated" my foods for years - eating any given food only once every four days, and foods that might cross-react with each other on the same day.  I've found that eating foods once every four days helps avoid developing new delayed food allergies.  And, I've developed new delayed food allergies to foods that I ate more often than once every four days, even recently.  
Since eating a food once every four days helps to prevent new delayed food allergies, I hope it will also help to re-establish tolerance to foods.  
This is different from the oral desensitization methods that have been used to help people get over their "classical" IgE-mediated food allergies.  In the research so far, people have generally eaten a tiny amount of the food several times a day, every day.  
I've been gluten-free since 2001, so that's 13 years now.  I haven't gotten over any of my delayed food allergies with strict avoidance, so far as I know.  So I hope my desensitization experiments will help.
I've been trying this oral desensitization since about the start of this year - so about 3 months now.  So far, I've found that my reaction to a given food becomes less after about a month of eating it once every four days.  But I haven't found that I became even less sensitive to a food after 3 months of eating it once every four days.   Eating 20 mg of the food still makes me rather sick.  
I have also been trying oral desensitization for some of my inhalant allergies.  I've been eating about 50-70 mg of unfiltered honey (which has various pollens in it), again once every four days.  Also, I have a horrible dog allergy.  So I mailed a piece of towel to a friend, asked him to rub it thoroughly on his dog's hair and skin, and mail it back to me.  Once every four days, I take this piece of towel out of its airtight container, snip off about 1/8" of thread from it, and put the bit of thread on a drop of filtered honey (I'm not allergic to filtered honey because the pollens have been taken out).  I hold my breath while doing this so I don't have an inhalant allergic reaction.  Then I eat the honey with the bit of thread in it.  
According to research studies, eating allergens doesn't work to desensitize inhalant allergies, because the allergens are destroyed by stomach acid.  Letting allergens sit under one's tongue (sublingual immunotherapy) does work.  
But my inhalant allergies are much more sensitive than most people's, so I think eating inhalant allergens will work for me, despite the research studies.   I'm actually much more sensitive to eating inhalant allergens than I am to the food allergens.  I got pretty sick when I first started eating 1/8" of thread from the piece of towel, and I stayed sick for a couple of days.  So I figure since I do have reactions, my body is probably building up tolerance to inhalant allergens this way.  I've been doing this for about two months, and my reactions have become less severe.  
I used to subscribe to a celiac mailing list, and now and then people would describe gradually reintroducing foods they have delayed food allergies to, after years of not eating them.  
Has anyone else tried desensitizing their delayed food allergies?

[StephanieL]

The research in oral desensitization for IgE allergies is still very new, very experimental and very undetermined as far as if the patient will remain not allergic. It also requires life long (as far as they can tell now) maintenance daily to weekly.  Also, there isn't a lot of research on FPIES. They don't even have a billing code for it so it's not recognized by a lot of Dr's at all.

 

Many people choose to take daily antihistamines to help with symptoms of airborne allergies. Perhaps it's something to consider.  

[Laura Wesson]

The research in oral desensitization for IgE allergies is still very new, very experimental and very undetermined as far as if the patient will remain not allergic. It also requires life long (as far as they can tell now) maintenance daily to weekly.  Also, there isn't a lot of research on FPIES. They don't even have a billing code for it so it's not recognized by a lot of Dr's at all.

 

Many people choose to take daily antihistamines to help with symptoms of airborne allergies. Perhaps it's something to consider.  

What I'm doing is very experimental - but then, going on a longterm hypoallergenic elimination diet is also experimental, and I think it may be bad for my immune system. 

I do take an antihistamine, the loratadine.  The 15 mg loratadine I take every day is more than the 10 mg "standard" dose.  I've heard the 10 mg dose is actually a rather small dose, and I found 15 mg works better to decrease the food reaction.

My delayed food allergies probably involve mast cells, because the mast cell stabilizer cromolyn helps prevent the reaction, as does the antihistamine. 

That doesn't imply that my delayed food allergies are IgE-mediated, because there are other immune mechanisms for triggering mast cells. 

I read an old article where they found that histamine and other inflammatory stuff is released in the gut when celiacs eat gluten.  So mast cells might be involved in developing celiac disease. 

[Laura Wesson]

I decided to eat most of those foods only once every 8 days.  I've actually developed new delayed food allergies to some foods that I was eating once every 4 days.  That happened with allergenic foods - seeds and nuts mostly. 

[GottaSki]

Mast Cells are certainly involved in the mechanism that caused me to develop many "delayed food allergies". 

 

Until I recently found the correct combo of H1, H2 and Mast Cell Blockers to control the mast cell reaction within my digestive system -- I had never got any food back that I've had to remove these past five years - except almonds.  No amount of rotation helped, I failed every challenge to every food for the past three years.

 

I can now do most dairy - just not aged cheese along with small amounts of corn and rice.  Taking it very slow as I am fearful of yet another backslide.

 

I hope rotation helps you, but if you have gut inflammation caused by the many mediators that mast cell dump when out of control, I highly recommend seeking the advice of a top notch allergist to find the correct prophylactic antihistamine usage for your body.

 

For those of you reading along that don't know me -- I rarely advise folks to add medication to solve dietary isusses.  If a change in diet is enough to improve health, that should always be tried first IMO

[Laura Wesson]

Mast Cells are certainly involved in the mechanism that caused me to develop many "delayed food allergies". 

 

Until I recently found the correct combo of H1, H2 and Mast Cell Blockers to control the mast cell reaction within my digestive system -- I had never got any food back that I've had to remove these past five years - except almonds.  No amount of rotation helped, I failed every challenge to every food for the past three years.

 

I can now do most dairy - just not aged cheese along with small amounts of corn and rice.  Taking it very slow as I am fearful of yet another backslide.

 

I hope rotation helps you, but if you have gut inflammation caused by the many mediators that mast cell dump when out of control, I highly recommend seeking the advice of a top notch allergist to find the correct prophylactic antihistamine usage for your body.

 

For those of you reading along that don't know me -- I rarely advise folks to add medication to solve dietary isusses.  If a change in diet is enough to improve health, that should always be tried first IMO

You chopped a useful link out of something I posted  

It was so unfair, I didn't want to post here for a long time.  I wasn't expecting to hear from the same person who did that to me.  So sorry, I can't reply.

[notme]

i remember you - you posted a link to your blog, which is self promo, which is not allowed.  when you make an account here, you agree to certain rules and courtesies.  lisa is one of the people who is going through something similar to your affictions so she understands to some degree.  I am questioning the validity of eating cloth that has been rubbed on a dog, but if she understands what you are talking about, by all means, carry on.  if you are going to purport it as medical facts or advice, you might want to be ready to back it up.  (also in the rules) 

 

have a super shiny day! 

[GottaSki]

You chopped a useful link out of something I posted

It was so unfair, I didn't want to post here for a long time.  I wasn't expecting to hear from the same person who did that to me.  So sorry, I can't reply.

 

I don't need a reply.  I was simply posting my experience on the subject.

 

As volunteers, we moderators are given the same Board Rules as each and every member.  If you are upset with my action when you posted a link that broke the "no self promotion" rule, I strongly suggest you talk to Scott Adams about it.  If I was wrong, he'll be happy to reverse my action and I will apologize for the incorrect action at that time.

 

Until then, I do hope you find the answers you are looking for.

 

-Lisa

[stri8ed]

More and more, I am becoming convinced that these "food sensitivities" are indeed a local IGE sensitization in the GI tract. Consider the case of the nasal mucosa: Its estimated that over 40% of people thought to have "nonallergic rhinitis", actually have local allergic rhinitis (IGE mediated). Why should we assume the GI mucosa is that different? Its already been Open Original Shared Link that IGE can be produced locally in the GI tract, so its more a question of just how prevalent it is. Now considering the vast array of "non-allergic" (yet food/antigen-triggered) inflammatory conditions of the GI tract, I would suspect the rate to be at least 40% if not higher.

 

I have brought this up with a few doctors (one of them a leading gastroenterologist), and they are all in agreement that local allergy of the GI is a real thing. The problem is, unlike rhinitis where you can easily and objectively test for allergic sensitization, there is no easy way of doing so in the GI tract. Additionally, with all the quackery surrounding the topic of "food sensitivities/intolerance", doctors & researchers are less keen on touching this stuff.

[stri8ed]

I decided to eat most of those foods only once every 8 days.  I've actually developed new delayed food allergies to some foods that I was eating once every 4 days.  That happened with allergenic foods - seeds and nuts mostly. 

 

I had the same issue. I was doing a 4 day rotation diet to avoid developing further sensitivities, and In spite of this, I had developed new sensitivities (primarily to high protein foods). I found what worked for me, is limiting the protein content to 15 - 20 grams, of a given food, on a 4 day rotation. This makes sense when you consider the theory behind "leaky gut". As we know, allergies are developed against proteins, so naturally, the more protein antigens that pass through a hyper-permeable GI tract, the more likely an immune response will develop. It seems there is a certain threshold of antigens which the immune system will tolerate before sensitization occurs. So the idea behind a rotation diet, would be to keep the antigen concentrations for a given food below that threshold. Here is an image I copied out of an immunology book, which seems to relate nicely:

 

 

Also, Its Open Original Shared Link that following an allergic reaction in the GI tract, the intestines become more permeable (leaky). I can say for certain in my experience, I am more prone to developing further sensitivities soon after I have a big reaction (by eating a big portion of a food I am sensitive to). So that's something to keep in mind.