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Mast Cells And Immunoglobulin Free Light Chains


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#1 Larapiz

 
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Posted 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 :)


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#2 Juliebove

 
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Posted 24 June 2013 - 01:25 AM

Well, if it works for you but really that is all over my head.  Sorry.


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#3 Larapiz

 
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Posted 24 June 2013 - 03:26 AM

Well, if it works for you but really that is all over my head.  Sorry.

Main point is, researchers may be finding out how these delayed food allergies work.  A lot of celiacs have delayed-reaction food allergies. 

 

And it's looking like they start in the same way that regular allergies do - with the mast cells.  But, a different kind of antibody, the Ig free light chains, may be involved rather than IgE. 

 

The free light chains are increased in some autoimmune diseases.  Since celiac disease is an autoimmune disease, this suggests that the delayed food allergies associated with celiac disease, might be FLC-mediated. 

 

It's also possible to have an IgE allergy that is localized, and the delayed-reaction food allergies might also be local IgE allergies. 


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#4 Juliebove

 
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Posted 25 June 2013 - 02:06 AM

Main point is, researchers may be finding out how these delayed food allergies work.  A lot of celiacs have delayed-reaction food allergies. 

 

And it's looking like they start in the same way that regular allergies do - with the mast cells.  But, a different kind of antibody, the Ig free light chains, may be involved rather than IgE. 

 

The free light chains are increased in some autoimmune diseases.  Since celiac disease is an autoimmune disease, this suggests that the delayed food allergies associated with celiac disease, might be FLC-mediated. 

 

It's also possible to have an IgE allergy that is localized, and the delayed-reaction food allergies might also be local IgE allergies. 

I don't know what that means to me!  I do not have celiac.  I do have IgG allergies...aka food intolerances.


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#5 Larapiz

 
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Posted 25 June 2013 - 05:44 AM

I don't know what that means to me!  I do not have celiac.  I do have IgG allergies...aka food intolerances.

Your "IgG allergies" very likely are actually mediated by Ig free light chains.  Or perhaps they are localized IgE allergies. 

I don't know that IgG antibodies can cause mast cell degranulation, but the FLC's do. 

IgG antibodies actually often interfere with IgE-mediated mast cell degranulation.  Allergy shots work by increasing IgG antibodies, which decreases IgE antibodies long-term. 

IgG antibodies to a food indicate that your immune system has been exposed to the food. 

But, high IgG antibodies to a food do not necessarily indicate that you have an allergy to the food.

People have been diagnosed with "IgG allergies" to foods, but this is an uncertain diagnosis. 

You might be able to get an idea of whether mast cells are involved in your food reactions, by taking cromolyn 20-30 minutes before eating the smallest amount of the food that would normally trigger a reaction. 

If cromolyn decreases your food reaction, that likely means that it involves mast cells, since cromolyn is a mast cell stabilizer.  Cromolyn might do other things besides stabilizing mast cells, so if cromolyn helps I don't know that you can be SURE the food reaction involves mast cells.

It's good to know whether food reactions involve mast cells, because that gives you an idea of what treatments might be helpful. 


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#6 foam

 
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Posted 27 June 2013 - 02:19 AM

Larapiz, you sound like you've read up quite a bit on immunoglobulins.  I'm interested if you have any theory's about what may cause my condition "Kimura's disease". Theory goes that it's an hypersentivity and or an auto immune condition, it certainly can be once it has kidney involvment as in my case. The level of severity of the condition can me measured in my case by the IgE level which is directly proportional to my eosinophil level and IL-4-IL-5. levels. As far as I understood the vast numbers of IgE are caused / made by B-lymphocytes from a hyper active Th2 immune response. 

 

But no one really knows, however SOMETHING is causing masses of IgE antibodies to be made. Kimura's disease has been treated before with mast cell stabilizers and it does help control it, as do serious immune suppressants (especailly cyclosporine A and fk506). Suplatast tosilate (IPD-115T) also works. it's a pretty safe IL-4/IL-5 TH2 blocker, but only available in Japan is seems. Because Cetirizine and Loratadine block IgE somewhat I've been taking one of each per day and have managed to get my IgE down from above 4000 to about 2000 and also having much less reaction to foods (not surprisingly about half the reaction I used to have).  So I'm very interested in finding ways to reduce IgE levels. Because it's such a rare condition it's basically impossible to find anyone that knows how to cure it. I myself believe it's caused in the first place by nothing more than gut damage and long term altered bacterial load, but how to reverse it and get the levels down is what interests me the most at the moment. I haven't tried a mast cell stabilizer yet but have wanted to. Is cromolyn available in oral form? it's only used here as an inhaler for asthma it seems. Pranlukast is available to me if want to try it.

 

For now I'm just continuing the antihistamines and a heavy dose of Echinacea, which is supposed to help shift you to Th1 and it did work for me at my last blood test.


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#7 Juliebove

 
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Posted 27 June 2013 - 02:34 AM

Your "IgG allergies" very likely are actually mediated by Ig free light chains.  Or perhaps they are localized IgE allergies. 

I don't know that IgG antibodies can cause mast cell degranulation, but the FLC's do. 

IgG antibodies actually often interfere with IgE-mediated mast cell degranulation.  Allergy shots work by increasing IgG antibodies, which decreases IgE antibodies long-term. 

IgG antibodies to a food indicate that your immune system has been exposed to the food. 

But, high IgG antibodies to a food do not necessarily indicate that you have an allergy to the food.

People have been diagnosed with "IgG allergies" to foods, but this is an uncertain diagnosis. 

You might be able to get an idea of whether mast cells are involved in your food reactions, by taking cromolyn 20-30 minutes before eating the smallest amount of the food that would normally trigger a reaction. 

If cromolyn decreases your food reaction, that likely means that it involves mast cells, since cromolyn is a mast cell stabilizer.  Cromolyn might do other things besides stabilizing mast cells, so if cromolyn helps I don't know that you can be SURE the food reaction involves mast cells.

It's good to know whether food reactions involve mast cells, because that gives you an idea of what treatments might be helpful. 

I do not have IgE allergies to foods.  I have been tested.  I do believe that the IgG allergies I was diagnosed with are for real.  Because I know what happens to me when I eat those foods and it is not good!

 

I don't see how I could possibly take Cromolyn.  I don't even think it is available here any more.  I did look it up and it said it was in eye drops and nasal spray but those have been discontinued.  As I said, when I tried the nasal spray, I got bad nose bleeds.  Same for daughter.  As for eating the smallest amount that would make me sick?  Well, that would be a single small shred of cheese put in my salad, then picked out and the salad eaten.  I don't want to take the chance of getting sick like that.  It's no fun.

 

What country are you in and where do you get it?


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#8 Larapiz

 
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Posted 27 June 2013 - 04:59 AM

 I'm interested if you have any theory's about what may cause my condition "Kimura's disease". Theory goes that it's an hypersentivity and or an auto immune condition, it certainly can be once it has kidney involvment as in my case. The level of severity of the condition can me measured in my case by the IgE level which is directly proportional to my eosinophil level and IL-4-IL-5. levels. As far as I understood the vast numbers of IgE are caused / made by B-lymphocytes from a hyper active Th2 immune response. 

 

Have you asked your doctor about getting Xolair injections? 

Xolair is IgG antibodies to IgE.  So perhaps it would reduce the IgE level in your blood. 

I'm getting Xolair.  I have incredibly severe inhalant allergies and Xolair helps somewhat.

I have a reaction to the Xolair injections though.  It feels somewhat like my inhalant allergies do.  For me, the reaction goes on about 5 days, with most people it's more like 2 days. 

Xolair has a risk of anaphylaxis and you have to carry an epi-pen in case of a delayed anaphylactic reaction to the shots. 

Xolair is expensive, $800 per shot, but there's a program that may give you $4000 towards the cost of the injections. 

That is interesting that you have kidney problems from Kimura's.  I do too - my food reactions have made my kidneys hurt in the past.  Back in 2005 my back was hurting so much around my kidneys, from (non-gluten) food reactions, that I couldn't stay in a seated position.  I had to lie on my back. 

I think the food reaction causes kidney pain or kidney inflammation or something.  I read something about the free light chains causing kidney inflammation.  So it's easy to believe that having a lot of IgE would cause kidney problems. 

Also I get repeated urinary tract infections which get into my kidneys, and I have microscopic blood in my urine, whenever they look at it, which suggests that my kidneys are irritated somehow. 

You can try probiotics, prebiotics ... if they help, it would be on a timescale of months or years


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#9 Larapiz

 
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Posted 27 June 2013 - 05:14 AM

 I do believe that the IgG allergies I was diagnosed with are for real.

 

I don't see how I could possibly take Cromolyn.  I don't even think it is available here any more.  I did look it up and it said it was in eye drops and nasal spray but those have been discontinued.  As I said, when I tried the nasal spray, I got bad nose bleeds.  Same for daughter.  As for eating the smallest amount that would make me sick?  Well, that would be a single small shred of cheese put in my salad, then picked out and the salad eaten.  I don't want to take the chance of getting sick like that.  It's no fun.

 

What country are you in and where do you get it?

I'm in the United States, Nasalcrom is over-the-counter in most drugstores here.  I've ordered it on Amazon too. 

I'm not saying you're making up your allergies. 

But the "IgG allergy" diagnosis isn't scientifically supported so far as I know.  It's only someone's guess.  I don't think researchers know much about how these kinds of food reactions are triggered.  But "localized" IgE allergies, that don't show up in skin or blood tests, are a possibility.  Also food allergies could be mediated by the "free light chains".  I don't know if there's any evidence that delayed food allergies could be initiated by IgG antibodies reacting with the food. 

Cromolyn might help prevent developing new delayed food allergies.  I got new food reactions at least 6 years after being gluten-free. 


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#10 foam

 
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Posted 27 June 2013 - 06:26 AM

Have you asked your doctor about getting Xolair injections? 

Xolair is IgG antibodies to IgE.  So perhaps it would reduce the IgE level in your blood. 

I'm getting Xolair.  I have incredibly severe inhalant allergies and Xolair helps somewhat.

I have a reaction to the Xolair injections though.  It feels somewhat like my inhalant allergies do.  For me, the reaction goes on about 5 days, with most people it's more like 2 days. 

Xolair has a risk of anaphylaxis and you have to carry an epi-pen in case of a delayed anaphylactic reaction to the shots. 

Xolair is expensive, $800 per shot, but there's a program that may give you $4000 towards the cost of the injections. 

That is interesting that you have kidney problems from Kimura's.  I do too - my food reactions have made my kidneys hurt in the past.  Back in 2005 my back was hurting so much around my kidneys, from (non-gluten) food reactions, that I couldn't stay in a seated position.  I had to lie on my back. 

I think the food reaction causes kidney pain or kidney inflammation or something.  I read something about the free light chains causing kidney inflammation.  So it's easy to believe that having a lot of IgE would cause kidney problems. 

Also I get repeated urinary tract infections which get into my kidneys, and I have microscopic blood in my urine, whenever they look at it, which suggests that my kidneys are irritated somehow. 

You can try probiotics, prebiotics ... if they help, it would be on a timescale of months or years

 

I've read quite a bit about Xolair and for sure it would smash down my IgE levels but it's only available in trials here at the moment and they aren't doing trials for weird rare diseases... But I keep my eye on this and a few other future drugs because they are coming and they will work perfectly for me.. Sooner or later they will be generic and cheap too. I just have to hang in there. If you do a Kidney biopsy on people with Kimura's disease you find IgE and Eosinophils in the Kidney tissue, I'm not sure why I don't think anyone is. But I read an interesting report from the late 90s before much was known about treating it. Some person with Kimura's kidneys had almost failed, which happens eventually so they gave him/her one transplanted kidney and cyclosporine a to stop rejection. Then when they were testing kidney function the old ruined Kidney was fixed!:) this is when they realised the kidney damage was immune system related. 

 

When they talk about Kimura's disease they are actually only talking about the tumour/s. I have a large one in my neck which is pretty typical but I believe I've had this "condition" without the """Kimura's""" tumour for decades before the tumour developed. As I've had high eosinophil levels for 15 years before the tumour arrived and although I didn't have an IgE test early on, I had the skin trauma that comes from very high histamine levels also very early in the scene, much worse early on in fact. I believe my IgE level must have been in the 15,000-20,000 range when I was in my 20's when this all started (I'm 40 now). It leads me to believe that Kimura's disease is just a late stage thing that happens after many years of a bad case of leaky gut and candida intolerance, I think that the structure of candida must surely be very similar to kidney tissue. Unless the kidney damage is just caused by the general inflammation. Like you I also have some protein and and blood loss through the kidney, mines not so bad and I've managed to hold steady for the last 6 years but my kidneys don't function anywhere near as well as they should for someone my age and non drinker/smoker etc. I used to think my lower back pain was just my back being out of place but as my IgE levels have dropped so has my back pain..

 

I have some idea that long term bacterial species changes because of an un natural diet (high in grains) is the cause of a lot of our problems. If you eat mostly plants, eventually your gut is populated almost entirely of plant eating bacteria, same with eskimos (different bacteria) and same again with animals that eat grains, early in life as infants (if breast fed) our gut bacteria is almost entirely bifidobacterium species. Because bacteria in your gut modulate your cytokines you don't need much of an imagination to see that having a majority of you gut bacteria setup to digest grains could quite easily _not work well for your immune system_ add onto that grain proteins being attacked by your immune system once you have a leaky gut and it's double to problem. I can quite easily prove bacteria effect your immune system because I can change the size of my tumour and hence eosinophil levels by drinking very heavy loads of certain bacteria, for the better or worse. The problem with it is, it's almost impossible to maintain the bacteria that's "good" when you happen to fluke growing one.

 

I'm actually going to a nearby haematologist in a weeks time to talk about things and hopefully get some advice on what to expect from cyclosporine a regarding side effects and how to monitor it. I don't want to go on it yet. I'd like to continue what I'm doing until I get my IgE levels under 1000, once I get that close, then I'd like to do a course of Prednisone and cyclosporine to get rid of the tumour as they are well proven to do that, just to sort out the kidneys and also for cosmetic reasons (I'd rather not have the tumour given a choice). After that hopefully a small dose of zyrtec/loratadine or a mast cell stabilizer will hold my levels down, if not then a low dose of cyclosporine will. There's also a SIBO issue going on with me too, I have been taking metronidazole whenever I get pain in the small intestine (it takes about a month or two to come back) and comes back whenever I fall off the bandwagon and eat sugar.

 

I don't think Kimura's disease is quite as rare as many people believe because I've read of quite a few people having mystery tumours before going on radical diets, also I think it accounts for most if not all cases of people recovering magically from non hodgkins lymphoma with diet, it's very easy to be misdiagnosed as that. Anyway the problem with all this stuff is that even the best researchers don't fully understand it yet and it's fairly leading edge current research. There's a new paper out on Kimura's disease where they achieved a proper cure with a single injection of IVIG and can't fully explain WHY !:), although that's a lot more expensive than even Xolair :)


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#11 Larapiz

 
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Posted 27 June 2013 - 08:44 AM

There's also an autoimmune disease called IgA nephropathy that causes kidney inflammation and bleeding and eventually kidney failure. 

Perhaps Singulair (montelukast) would counter the eosinophilia.  It lowers eosinophils in allergic rhinitis. 

Gary Huffnagle is a microbiologist who studies interactions of the gut microorganisms with the immune system.  He wrote a book The Probiotics Revolution which is a good science-based book on probiotics, prebiotics and a diet that will favor a good gut ecosystem. 

I doubt there's anything wrong with eating grains unless you're having an immune reaction to them.  I do have reactions to all grains and I've been eating a high-carb but grain-free diet since 2003.  I eat a lot of quinoa and amaranth, they are grain-like but not in the grass family. 

Gary Huffnagle gave me a perspective that what one wants to do is to keep one's immune system healthy with diet and probiotics, and that will help maintain one's tolerance for allergens. 

However gluten may really be a fundamental villain that people get much too much of, in the modern diet.  Alessio Fasano, a celiac researcher, gave an interview where he seemed to think that gluten is not particularly good for anyone. 

I got into a huge sugar habit because I was very sick with allergies and I would eat sugar to try to pep myself up so I could do things.

I had also been on long-term antibiotics, and according to my allergist, that plus eating a lot of sugar could really mess up my gut flora.

Mostly I developed very VERY bad late-phase allergic reactions.  I stay sick for about 5 days after I'm exposed to an allergen! 

This spring I stopped eating sugar almost entirely.  I also started drinking pau d'arco tea, which is a Candida killer, and the pau d'arco caused a flu-like illness where I felt very out of it, unreal, very tired and I was in bed a lot for about 7-10 days (dieoff reaction).  Probably this means I did have a Candida/dysbiosis problem.  I also had chronic loose stools at that time, which stopped once I fixed up my diet and killed the Candida.  I was on nystatin, an antifungal, for a couple months after that.

Apparently there is enough scientific evidence for mainstream allergists to ask whether you've been on longterm antibiotics - it may make allergies worse by messing with the gut ecosystem. 


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#12 foam

 
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Posted 27 June 2013 - 05:32 PM

I have a considerable eosinophilic reaction to almost anything processed it seems. Most especailly gluten free pizza from Dominos! I don't know why but that stuff doubles the size of my tumour within days of eating it and it's repeatable, eating something like that will bump my eosinophil levels back up into the 30% range and I have had it down to 15% recently. I've never figured out what the ingredient that does it is. All I know is that grain free, sugar free and a diet high in vegetables reduces it.. I had some allergy testing done, only skin prick testing but the only thing that showed up was antibodies to candida and a couple other yeasts/moulds. The candida prick test was a late reactor and burned a hole in my skin starting 2 days after the test and continued for a couple of weeks after my testing, I assume that was a late phase eosinophil reaction. I've tried Diflucan and nystatin, no luck with either. 

 

We might try another antifungal at some stage though. I tend to have a positive reaction to mebendazole which improves things quite rapidly for a short time, it's strongly anti candida, more than diflucan 


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#13 Larapiz

 
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Posted 27 June 2013 - 06:36 PM

I have a considerable eosinophilic reaction to almost anything processed it seems.

What does this feel like - if anything? 

Does one develop extra mast cells, with the high IgE?

I read some on a mastocytosis board and they describe "brain fog" from foods, it sounded somewhat like my food reactions. 


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#14 foam

 
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Posted 27 June 2013 - 08:36 PM

It's possible I have excessive mast cells but I don't know how you find out these things, probably a biopsy and I'm not so keen on too much more diagnostics, I've already had so many and the stress isn't good. The reaction feels like a dull pain in the gut, when it's really bad then it's more like a heat you can feel through your veins and a quite painful gut in those times but it's nothing like the pain from a gluten reaction. I used to get initial brain fog, then momentous gut pain and then I'd be off to the toilet everyday when I was eating gluten back a few years ago. I don't have any brain fog to any food now, only the eosinophil reaction to... most probably yeasts and it's probably a cross reaction to candida 


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#15 Juliebove

 
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Posted 28 June 2013 - 03:15 AM

I'm in the United States, Nasalcrom is over-the-counter in most drugstores here.  I've ordered it on Amazon too. 

I'm not saying you're making up your allergies. 

But the "IgG allergy" diagnosis isn't scientifically supported so far as I know.  It's only someone's guess.  I don't think researchers know much about how these kinds of food reactions are triggered.  But "localized" IgE allergies, that don't show up in skin or blood tests, are a possibility.  Also food allergies could be mediated by the "free light chains".  I don't know if there's any evidence that delayed food allergies could be initiated by IgG antibodies reacting with the food. 

Cromolyn might help prevent developing new delayed food allergies.  I got new food reactions at least 6 years after being gluten-free. 

Nasalcrom is what did a number on us, daughter and I.  Caused very bad nose bleeds and did nothing for our allergies.  Not something we would be willing to ever try again.  The way you were talking about it, I thought it was some sort of pill. 

 

I am really pretty sure that neither of us have IgE food allergies. 


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