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Mast Cells And Immunoglobulin Free Light Chains


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#16 Larapiz

 
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Posted 29 June 2013 - 09:31 AM

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 was talking about cromolyn for food reactions, not inhalant allergies.  It is taken orally for food allergies, not as a nasal spray. 

 

I was suggesting that one could try drinking Nasalcrom, as an experiment to see whether it lessens food reactions.  This doesn't require having a prescription.

 

Yes, I was talking about using dry cromolyn.  I found that dry cromolyn can be obtained at a reasonable cost, from a compounding pharmacy.  One gets the cromolyn in capsules, then you mix capsules in water. 

 

The brand-name, non-compounded oral version of cromolyn is called Gastrocrom. 

 

Gastrocrom comes as a liquid - the cromolyn is dissolved in water - and it's HUGELY expensive.  It was like $65 per DAY as I remember.  As a powder, I was able to obtain a MONTH's supply for $129.

 

I think cromolyn is little known among the celiac and food-allergic community, because the usual form is so very expensive. 

 

Somebody is making a HUGE profit off Gastrocrom!

 

Hope that clears it up :)

 

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

 

It's possible to have localized IgE-mediated allergies.  Researchers know most about this, in rhinitis (inhalant allergies).

But it's also likely that people can have localized IgE-mediated food allergies, see for example http://www.ncbi.nlm....pubmed/21679125

The localized IgE-mediated food allergies wouldn't show up on skin or blood tests for IgE antibodies, and they could have different symptoms from classical food allergies. 

However, the immunoglobulin free light chains are produced a lot in some autoimmune diseases.  Celiac disease is an autoimmune disease, so that does suggest that the reactions to non-gluten foods that a lot of celiacs have, might be mediated by FLC's, more than IgE. 


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#17 notme!

 
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Posted 29 June 2013 - 09:41 AM

I was talking about cromolyn for food reactions, not inhalant allergies.  It is taken orally for food allergies, not as a nasal spray. 

 

I was suggesting that one could try drinking Nasalcrom, as an experiment to see whether it lessens food reactions.  This doesn't require having a prescription.

 

:o   my neice has food allergies - why isn't her doctor suggesting this ???  isn't this still pretty experimental?  plus, it looks like the potential side effects outweigh the benefits.  you are pretty much dogging this subject...  are you sure this is the appropriate place to post very confusing theories.


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#18 Larapiz

 
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Posted 29 June 2013 - 09:44 AM

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

yeah, I was just speculating.  There's a new and not very well understood condition called mastocytic enterocolitis, where people have extra mast cells in their intestine, and it causes diarrhea.  One GI doc I read, tests celiacs who are still sick on a gluten-free diet, for it. 

 

Before I went through this process of food elimination (including gluten), I would get hunger pangs, CAUSED by eating certain foods!  Such as apples.  Later I found I had intense allergies to those foods, and the hunger pang was an allergy symptom, somehow.  


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#19 foam

 
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Posted 05 July 2013 - 04:31 AM

I had a bit more of a read about this the other day and apparently Kimura's disease comes with an increased amount of mast cells. One case was successfully treated with prankulast, I already knew that. I have been offered Singulair/ montelukast by my doctor before but haven't actually tried it yet.

 

I'm surprised more people aren't going down the long term cetirzine route that I've taken, it works for asthma or any other IgE allergy/hypersensitivity in the long run, sure it takes weeks/months but it's pretty safe and hasn't done me any harm in the 7 months I've been taking it daily. It's certainly knocked the stuffing out of my IgE levels. It's a pretty cheap and effective cure for asthma or pet danger type problems it really should be used more for that


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#20 Larapiz

 
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Posted 05 July 2013 - 10:24 AM

:o   my neice has food allergies - why isn't her doctor suggesting this ???  isn't this still pretty experimental?  plus, it looks like the potential side effects outweigh the benefits.  you are pretty much dogging this subject...  are you sure this is the appropriate place to post very confusing theories.

Cromolyn is used for food allergies, it's not my personal theory. 

What I was saying is that cromolyn also helps for my food reactions - suggesting that they are triggered by mast cells, just like classical food allergies. 

I think the reason it isn't used more often is that the brand-name version, Gastrocrom, is VERY expensive, like $65 / day.

I posted this because I found a source for cromolyn, the same dose, for $129/month.  I get it in powder form and I mix it with water. 

You could suggest this to your niece, tell her it's possible to get cromolyn inexpensively from a compounding pharmacy. 


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#21 notme!

 
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Posted 05 July 2013 - 11:20 AM

Cromolyn is used for food allergies, it's not my personal theory. 

What I was saying is that cromolyn also helps for my food reactions - suggesting that they are triggered by mast cells, just like classical food allergies. 

I think the reason it isn't used more often is that the brand-name version, Gastrocrom, is VERY expensive, like $65 / day.

I posted this because I found a source for cromolyn, the same dose, for $129/month.  I get it in powder form and I mix it with water. 

You could suggest this to your niece, tell her it's possible to get cromolyn inexpensively from a compounding pharmacy. 

or, she could just not eat nuts.  for free :)   lolz

 

i think you have thoroughly covered this subject - thank you for all the info for all that are interested it's nice of you to take the time and concern.  

 

thanks again for your reply and have a pleasant day!  :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#22 foam

 
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Posted 05 July 2013 - 01:37 PM

Larapiz, did you ever try Ketotifen? it's not available here but I've ordered some online, I've read it's been used to heal leaky gut by some experimental doctors in the past. Also an excellent mast cell stabilizer 


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#23 Larapiz

 
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Posted 05 July 2013 - 02:34 PM

Larapiz, did you ever try Ketotifen? it's not available here but I've ordered some online, I've read it's been used to heal leaky gut by some experimental doctors in the past. Also an excellent mast cell stabilizer 

I haven't, I was thinking of asking my allergist about other mast cell stabilizers.  Also possibly quercetin. 

I read that one can take up to double the dose of cromolyn, the usual dose is 800 mg/day, so it can be upped to 1600 mg/day if needed.

I haven't tried any of the foods I have reactions to, to see if the cromolyn enables me to eat them.

So far, what it's done for me is enabled me to take Singulair tablets from a regular pharmacy without getting sick from the tablet fillers.  That's a big help. 

 

or, she could just not eat nuts.  for free :)   lolz

For me it's FAR more than just not eating nuts.  There are only a few foods that I CAN eat and I've spent a huge amount of time getting exotic Latin American roots and other foods.  It would be a BIG relief if I could be just gluten and dairy-free! 

Perhaps there are other people in a similar position, who would like to liberalize their diet. 

Also, there are people with food allergies that can kill them, if they accidentally get a food.  If those people were taking cromolyn every day, maybe peanuts or whatever would no longer be life-threatening for them.

That this allergy-suppressing drug is ACTUALLY available for a reasonable price, could be very helpful for some people with food allergies. 


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#24 foam

 
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Posted 05 July 2013 - 10:18 PM

Well this whole thing is about immune system dysregulation due to abnormal gut flora in the end, you can totally adjust all the levels in your immune system by eating different fermented foods with different cultures, I've done it myself but sometimes you need a little more help than that to repair the system so the normal flora can grow and thrive. I'm not shy about trying safeish drugs to help speed the process because the longer it takes the more likely you wont make it out in time, having a leaky gut is a time bomb. I'll let you know how the Ketotifen goes.


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#25 Larapiz

 
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Posted 06 July 2013 - 03:55 AM

having a leaky gut is a time bomb.

I don't know if I have a leaky gut any more - I may have stopped developing new food reactions.

What did happen is that I developed an extreme hypersensitivity to dogs (and probably cats too).  I was living with my dog in my house for years, I became sick in 2007 and I'm not well yet.  In January I put my dog in a boarding kennel and moved out of my house.  I was living in hotels for months and just recently I started renting a place. 

It's EXTREMELY difficult to avoid dog and cat dander, especially when you are very sensitive as I am.  Avoiding food allergens is a picnic compared to that.  I'm actually allergic to my allergist's office.  I get quite sick when I go there, probably because there are dogs living in the building, and even though he keeps the door to the rest of the building closed, the dog dander gets into his office. 

I had a VERY hard time finding a place to rent that didn't make me sick, hadn't had dogs or cats living in it recently.

Yes, I'm not shy about using drugs either.  One can't afford to make ideology-based decisions, in this state.  It's healthy people who can afford ideologies like "I want everything to be natural".   I'll do everything reasonable to try to get out of this inflammatory state I'm in.

My hope is that if I can get out of the chronic inflammatory state, my body will recover and become less sensitive.  Inflammation is a vicious circle, it's self-perpetuating because inflamed tissue gets more sensitive to allergens. 

I less sick now than I was, living in my house.  I no longer feel the need to eat a lot of sugar just to go out and do shopping.  When I was living in my house I felt I couldn't drag myself out without lots of sugar - I used the adrenaline reaction to the sugar to get myself going, I guess. 

So that is progress, at least. 


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