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Member Since 05 Sep 2008
Offline Last Active Apr 07 2014 12:42 PM

Topics I've Started

Desensitizing The "other Food Intolerances"

06 April 2014 - 06:07 AM

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?

Do Any Usa Doctors Prescribe Oral Ketotifen?

24 December 2013 - 12:08 PM

Ketotifen is a good systemic mast cell stabilizer and antihistamine that in oral form apparently works well for food allergies.  I have many, many food allergies, not the kind that show up on skin or blood tests.  And too many foods are off limits for me now.  So I'm looking at medications that might enable me to eat foods I couldn't eat otherwise. 

I know that cromolyn helps to reduce the food reaction.  But I heard that ketotifen is better. 

But in oral form, ketotifen isn't available in the USA, except from some compounding pharmacies.  To get it from a compounding pharmacy, I probably need a doctor's prescription. 

You can buy ketotifen online, but I've only see the tablets, which have ingredients like corn starch and lactose that I'm allergic to.

So are there doctors in the USA who will prescribe it?  Or would I have to see a doctor in Canada? 


25 June 2013 - 03:17 PM

Quercetin is also a mast cell stabilizer, and it might have beneficial effects similar to cromolyn - helping people to eat foods without having a reaction, and preventing reactions to new foods. 

Mast Cells And Immunoglobulin Free Light Chains

21 June 2013 - 09:08 AM

As I posted previously, I found that cromolyn, a mast cell stabilizer, made my food reaction much less intense. 

There are two things I know that can degranulate mast cells. 

IgE antibodies can do this, it's how allergic reactions start.

But researchers have recently found that immunoglobulin free light chains can also degranulate mast cells

An immunoglobulin is made up of 2 kinds of proteins:  light chains and heavy chains.  The light chains are produced in excess, so they wander around by themselves, not bound to heavy chains. 

Free light chains might be involved in allergy to casein (which cross reacts with gluten)

There's even an antagonist called F991.  It's a 9-residue peptide. 

Isn't that astonishing, that a 9-residue peptide might prevent so much misery ...  One might even be able to get a lab to synthesize it :)

Cromolyn Makes My Food Reactions Less Intense

21 June 2013 - 05:45 AM

Oral cromolyn sodium is a mast cell stabilizer.  It's used for people with mastocytosis and food allergies. 

I have food reactions of a pretty typical sort - characterized by a groggy (dazed, mentally impaired) state that starts coming on about 1/2 hr after eating the food and comes on fully 4-5 hrs after eating and lasts about 4 days; other symptoms may include physical clumsiness; diarrhea (usually I don't get diarrhea); itching; frequent urination; and psychological effects like irritability, emotional hyper-reactiveness, tension.

I wanted to be able to take Singulair for my inhalant allergies.  Singulair helps with the late-phase aspects of allergic reactions - it decreases the fuzzy-headed, difficulty thinking, foggy, low energy state.  But I had a hard time finding Singulair from a compounding pharmacy - I do have a food reaction after Singulair tablets from a regular pharmacy.

So I started cromolyn.  It's something you take 4 times/day before meals, the effects build up over 2-3 weeks. 

I found that if I took cromolyn before the Singulair tablet, the food reaction was much decreased. 

Since cromolyn is a mast cell stabilizer, this suggests that my food reactions involve mast cells.

The usual dose of cromolyn is 200 mg 4x/day, and one can increase it to 400 mg 4x/day.

Cromolyn usually comes as Gastrocrom, and it's hugely expensive.  But, I was able to obtain it in powder form from a compounding pharmacy  and they only charged me $129 for 120 200 mg capsules.  The pharmacy I used was America's Compounding Center, apparently they use a supplier that was able to get this drug inexpensively.  Another compounding pharmacy wanted a much higher price for it. 

So you might be able to liberalize your diet for $129 per month - or maybe, twice that at the higher dose of cromolyn.

If you want to try cromolyn without a prescription to see if it works, you can take it as Nasalcrom, which is over the counter.  Nasalcrom is the nasal spray version of cromolyn, it's a liquid.  Nasalcrom does contain benzalkonium chloride and edetate disodium as preservatives, so it might not be a good idea long term - the dose for oral use is much higher than the dose used as a nasal spray.  Possibly the preservatives might disturb one's gut microbial ecosystem, so taking Nasalcrom orally may not be a good idea long-term.  But I used Nasalcrom to minimize the allergic reaction to the Singulair tablets, before I got a prescription for oral cromolyn, and I didn't notice any bad effects. 

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