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Scalp Folliculitis... My ***!


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#1 brizzo

 
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Posted 08 September 2006 - 12:25 PM

Okay, here's a VERY abbreviated synopsis of my history , and I'm sorry for the piss poor spelling and lack of gramatical structure.. (sorry it's as long as it is). I am a 28 yr old white male. As an infant I had a severe intolerence to wheat and dairy. I was never diagnosed with DH or Celiac. At 2 yrs old, my mother began to feed my gluten with no problems. I never even gave it another thought. 3 yrs ago I started to notice tiny "pimple like eruptions" on my scalp. Mostly looked like "white heads" and where about 10-15 in number. They did not go away, and they itched intensley! Well , to make a long story short. I saw three seperate general practitionars who all cultured it. It came up negative for any bacteria or fungi , all three times. All three practitioners put me on a 10 day course of antibiotics (doxycycline .. I think) and all the Docs called it "folliculitis of unknown origin." (just a sidenote, I have slowly realized that this means.... We don't have a f'n clue... sorry, for the vulgarity,,,but I have been through hell. After each 10 day dose of antibiotics, My scalp would completely clear, then return to the same problem w/i 5 days or so. I was finally refered to a dermatologist who diagnosed it as ... you guessed it; unspecified recurrent folliculitis. (another side note... folliculitis is caused by staph bacteria. I had three seperate cultures that showed ,,, no staph!) The derm gave me Tetracycline, which is a long term use antibiotic that they give acne patients. They aren't quite sure why tetracycline clears the skin. It just does. This stuff cleared me up in like 3 days and I pretty much stayed clear. Tetracycline also happens to be a second line drug of choice for DH. Well , here's the skinny... recurring folliculitis is a real thing...but here is the problem. Recurring folliculitis has "periods of remission". Like weeks-months before a second episode. (this is due to people harboring staph bacteria in their nose) anyways,,,,that's another class that I won't get into. Well, my periods of remission where lasting 1-2 days after completion of antibiotic regimen.
Long story short... (sort of) I took tetracycline for 4 months and did awesome!!!... Only problem , tetracycline started giving me awfull side effects that I won't discuss. I thought to myself, tetracycline with side effects or recurring scalp "pimples". I chose pimples. About 3 days after stopping my tetracycline, I started getting the same "pimples". That same day I started breaking out again. This time it was on my face and back too. This confirmed that it wasn't folliculitis for sure. I was getting these things where I didn't even have hair follicles, like my forehead! Folliculitis? , my a**! Well, that same day I read about DH and gluten intolerence. I started thinking to myself, I had a horrible wheat "allergy" as an infant, DH mostly affects white males in 20's-30's of Euro decent. Hey, this is me! Well, I started a gluten-free diet and within 2 weeks my scalp and face are about 95% clear without any antibiotics for the first time in 3 years. And just in case you are wondering, My GP tested me for diabetes, thyroid, kidney, liver function, CBC, HIV, HEPATITIS, and all where perfectly normal. I am an athletic and healthy male.
Here's the question for the class. I made an appoint with an allergist to try to confirm this gluten DH thing scientificly through labs/biopsy's ect, and to have some generlized food allergy tests done to confirm any other "foods "I need to avoid, as I am now 100% sure that this is a food thing. I have been gluten free for 2 weeks which means I will probably test a "false negative" to an antibody test if I am DH. Will my allergist understand this, will he still test me anyways, or will I mostly get written off as a loon. And no class, I will not go back on gluten for 6 weeks to test positive on the antibody test. that's not an option. It's nice to be "leprosy" free after 3 years and I intend to stay that way! :P Is there any benefit to an actual definitive diagnosis? I mean hell , if the gluten-free diet works, it must be DH... Please feel free to respond and tell me what a hypochondriac I am , how I am ignorant, or how I mispelled everything on here (I already know I mispelled 50 or so words, and my gramatical structure sucks too!) Believe me, I have heard it from Doctors for the past three years with this... I could care less... And finally I end with an up-note! Here's a joke for all you medical-net junkies(including myself)! What did the hypochondriac have written as an epitaph on his tombstone?... "See, I told you all I was sick!"
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#2 AndreaB

 
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Posted 08 September 2006 - 12:39 PM

Hi and Welcome!

If you are having an actual allergy test done, it won't matter if you are gluten free. They can pick up things for a long time. My allergist told me they can go back as far as 10 years I think. Some things your body doesn't forget that well I guess. That may just be the more severe allergies. I tested positive for a dairy allergy even though I had barely eaten it for 3 years before testing. When I eat it I get an allergic reaction, though not bad.

If you want to have a celiac panel done I would do it very soon. You don't need testing.....it's up to you. The diet is conclusive enough evidence. You could also go through enterolab if you want to spring the money, to see if you are intolerant/sensitive to gluten. They offer individual tests or a whole gluten panel which inludes genes, IgA antibodies, malabsorption, ttg and dairy is thrown in. Enterolabs website is here.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#3 jerseyangel

 
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Posted 08 September 2006 - 12:45 PM

Hi brizzo--welcome to the board! :)

You sound like a hoot :lol:

Seriously, at this point, any blood or endoscopy testing would probably come out negative since you've been gluten-free.

You could go through Enterolab--they do stool tresting for gluten intolerance. You don't have to be gluten-free for the tests. A lot of people here have gone through them and are very satisfied.

If you don't care about a firm diagnosis, you could just keep on being 100% gluten-free. Since you don't need a Rx or a doctor's permission to eat gluten-free, and it's a healthy way to eat anyway--you may want to consider it. Remember that a positive response to the gluten-free diet is a valid diagnostic tool in and of itself.

For this to work, you need to make sure that everything you put in your mouth is gluten-free. Vitamins, medications, personal care products. Gluten-proof your kitchen by using a separate toaster, collander, cutting boards and wooden spoons.

Be very careful of CC at home and whenever you eat out.

I hope that you've had a chance to read through some of the posts here--there's a lot of great info here from people who have "been there" :)
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#4 Ursa Major

 
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Posted 08 September 2006 - 12:54 PM

Well, you figured it out, welcome to the club of us 'hypochondriacs' who had idiot doctors all their lives. I had to figure out my intolerances (including gluten) by myself as well.

You decide if you need an 'official' diagnosis or not. If you do, no need to go back on gluten, you could just get tested by Enterolab (www.enterolab.com). It would take several months off gluten for their testing to return a false negative.

But to be tested for other food allergies and intolerances is still a good idea, because you may not just be intolerant to gluten. Just realize, that celiac disease is not an allergy, and therefore wheat and other grains may not show up on an allergy test. Heck, they may not even show on an intolerance test! The reason is, that often the reaction is not immediate, and delayed reactions are hard to pick up. That's why an elimination diet is often the only way to pinpoint those intolerances.

On a side note: Make sure your shampoo and conditioner (and all other personal care products, including soap, toothpaste, lotion, shaving cream, chap stick etc.) are gluten-free. If it says wheat germ oil, barley extract, oat bran etc., it contains gluten and needs to be avoided. Even vitamin E in those products can be a source of gluten, as often it is derived from wheat germ oil!

Also, you need to avoid sources of cross contamination. Meaning, that you need a new toaster, replace wooden cooking spoons, wooden cutting boards, plastic colanders and scratched anti-stick cookware (none of those can be cleaned well enough to get rid of all traces of gluten). You also shouldn't bake with regular flour, as you can get glutened by flour dust in the air.

I suspect that after being gluten-free for a while, you'll get reactions to gluten other than just the DH when you get glutened (and it will happen sooner or later, it's inevitable, especially at the beginning).

Anyway, welcome to our board!
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#5 mommida

 
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Posted 08 September 2006 - 01:00 PM

I pm'ed you a few minutes ago.
I forgot to add that Celiac Disease can cause hyperkeratosis folliculitis. It is the thickening of the skin that causes the pores to get get blocked so it very much like a pimple- so it would clear up with tetracycline. It is caused by the inablity to digest fats.
L.
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#6 Fiddle-Faddle

 
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Posted 08 September 2006 - 05:46 PM

I pm'ed you a few minutes ago.
I forgot to add that Celiac Disease can cause hyperkeratosis folliculitis. It is the thickening of the skin that causes the pores to get get blocked so it very much like a pimple- so it would clear up with tetracycline. It is caused by the inablity to digest fats.
L.



So THAT'S why I used to get those stupid white pimples under my eyes and on my forehead? They went away after I stopped ingesting gluten. A-HA! (I learn more and more from this board....)
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#7 brizzo

 
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Posted 09 September 2006 - 04:40 AM

I must sincerely thank you all for your posts and insight. What a great forum this is. Hey, what do you know, there is a web community with intelligence out there. You are all in my prayers, as I hope that I will be in yours'! Much luv guys, b. One day I will solve this!
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#8 firang

 
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Posted 22 January 2010 - 12:24 PM

Okay, here's a VERY abbreviated synopsis of my history , and I'm sorry for the piss poor spelling and lack of gramatical structure.. (sorry it's as long as it is). I am a 28 yr old white male. As an infant I had a severe intolerence to wheat and dairy. I was never diagnosed with DH or Celiac. At 2 yrs old, my mother began to feed my gluten with no problems. I never even gave it another thought. 3 yrs ago I started to notice tiny "pimple like eruptions" on my scalp. Mostly looked like "white heads" and where about 10-15 in number. They did not go away, and they itched intensley! Well , to make a long story short. I saw three seperate general practitionars who all cultured it. It came up negative for any bacteria or fungi , all three times. All three practitioners put me on a 10 day course of antibiotics (doxycycline .. I think) and all the Docs called it "folliculitis of unknown origin." (just a sidenote, I have slowly realized that this means.... We don't have a f'n clue... sorry, for the vulgarity,,,but I have been through hell. After each 10 day dose of antibiotics, My scalp would completely clear, then return to the same problem w/i 5 days or so. I was finally refered to a dermatologist who diagnosed it as ... you guessed it; unspecified recurrent folliculitis. (another side note... folliculitis is caused by staph bacteria. I had three seperate cultures that showed ,,, no staph!) The derm gave me Tetracycline, which is a long term use antibiotic that they give acne patients. They aren't quite sure why tetracycline clears the skin. It just does. This stuff cleared me up in like 3 days and I pretty much stayed clear. Tetracycline also happens to be a second line drug of choice for DH. Well , here's the skinny... recurring folliculitis is a real thing...but here is the problem. Recurring folliculitis has "periods of remission". Like weeks-months before a second episode. (this is due to people harboring staph bacteria in their nose) anyways,,,,that's another class that I won't get into. Well, my periods of remission where lasting 1-2 days after completion of antibiotic regimen.
Long story short... (sort of) I took tetracycline for 4 months and did awesome!!!... Only problem , tetracycline started giving me awfull side effects that I won't discuss. I thought to myself, tetracycline with side effects or recurring scalp "pimples". I chose pimples. About 3 days after stopping my tetracycline, I started getting the same "pimples". That same day I started breaking out again. This time it was on my face and back too. This confirmed that it wasn't folliculitis for sure. I was getting these things where I didn't even have hair follicles, like my forehead! Folliculitis? , my a**! Well, that same day I read about DH and gluten intolerence. I started thinking to myself, I had a horrible wheat "allergy" as an infant, DH mostly affects white males in 20's-30's of Euro decent. Hey, this is me! Well, I started a gluten-free diet and within 2 weeks my scalp and face are about 95% clear without any antibiotics for the first time in 3 years. And just in case you are wondering, My GP tested me for diabetes, thyroid, kidney, liver function, CBC, HIV, HEPATITIS, and all where perfectly normal. I am an athletic and healthy male.
Here's the question for the class. I made an appoint with an allergist to try to confirm this gluten DH thing scientificly through labs/biopsy's ect, and to have some generlized food allergy tests done to confirm any other "foods "I need to avoid, as I am now 100% sure that this is a food thing. I have been gluten free for 2 weeks which means I will probably test a "false negative" to an antibody test if I am DH. Will my allergist understand this, will he still test me anyways, or will I mostly get written off as a loon. And no class, I will not go back on gluten for 6 weeks to test positive on the antibody test. that's not an option. It's nice to be "leprosy" free after 3 years and I intend to stay that way! :P Is there any benefit to an actual definitive diagnosis? I mean hell , if the gluten-free diet works, it must be DH... Please feel free to respond and tell me what a hypochondriac I am , how I am ignorant, or how I mispelled everything on here (I already know I mispelled 50 or so words, and my gramatical structure sucks too!) Believe me, I have heard it from Doctors for the past three years with this... I could care less... And finally I end with an up-note! Here's a joke for all you medical-net junkies(including myself)! What did the hypochondriac have written as an epitaph on his tombstone?... "See, I told you all I was sick!"


Hi Brizzo I know this was a while back for you but I have a similar situation as your, did you ever end up finding what the problem was, I have similar scalp folliculitis and have wasted enough money on doctors and antibiotics that I don't know what to do anymore. Any help in this matter would be highly appreciated. Thanks
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#9 kampingal

 
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Posted 26 January 2010 - 10:10 AM

Hi Brizzo I know this was a while back for you but I have a similar situation as your, did you ever end up finding what the problem was, I have similar scalp folliculitis and have wasted enough money on doctors and antibiotics that I don't know what to do anymore. Any help in this matter would be highly appreciated. Thanks



Hi there, I'm new to this too and researching my own symptoms, trying to piece this mess together. My symptoms started about 4 years ago with a rash on my scalp similar to this. Itched terrible and my hair was falling out as well. It lasted over a year but eventually subsided. I have countless other problems/symptoms and am waiting for test results now. Sorry, this probably doesn't help you at all but I'll try to remember to come back and tell you what my results show.

Good luck!
Kathy
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#10 redman

 
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Posted 28 July 2012 - 05:03 PM

Okay, here's a VERY abbreviated synopsis of my history , and I'm sorry for the piss poor spelling and lack of gramatical structure.. (sorry it's as long as it is). I am a 28 yr old white male. As an infant I had a severe intolerence to wheat and dairy. I was never diagnosed with DH or Celiac. At 2 yrs old, my mother began to feed my gluten with no problems. I never even gave it another thought. 3 yrs ago I started to notice tiny "pimple like eruptions" on my scalp. Mostly looked like "white heads" and where about 10-15 in number. They did not go away, and they itched intensley! Well , to make a long story short. I saw three seperate general practitionars who all cultured it. It came up negative for any bacteria or fungi , all three times. All three practitioners put me on a 10 day course of antibiotics (doxycycline .. I think) and all the Docs called it "folliculitis of unknown origin." (just a sidenote, I have slowly realized that this means.... We don't have a f'n clue... sorry, for the vulgarity,,,but I have been through hell. After each 10 day dose of antibiotics, My scalp would completely clear, then return to the same problem w/i 5 days or so. I was finally refered to a dermatologist who diagnosed it as ... you guessed it; unspecified recurrent folliculitis. (another side note... folliculitis is caused by staph bacteria. I had three seperate cultures that showed ,,, no staph!) The derm gave me Tetracycline, which is a long term use antibiotic that they give acne patients. They aren't quite sure why tetracycline clears the skin. It just does. This stuff cleared me up in like 3 days and I pretty much stayed clear. Tetracycline also happens to be a second line drug of choice for DH. Well , here's the skinny... recurring folliculitis is a real thing...but here is the problem. Recurring folliculitis has "periods of remission". Like weeks-months before a second episode. (this is due to people harboring staph bacteria in their nose) anyways,,,,that's another class that I won't get into. Well, my periods of remission where lasting 1-2 days after completion of antibiotic regimen.
Long story short... (sort of) I took tetracycline for 4 months and did awesome!!!... Only problem , tetracycline started giving me awfull side effects that I won't discuss. I thought to myself, tetracycline with side effects or recurring scalp "pimples". I chose pimples. About 3 days after stopping my tetracycline, I started getting the same "pimples". That same day I started breaking out again. This time it was on my face and back too. This confirmed that it wasn't folliculitis for sure. I was getting these things where I didn't even have hair follicles, like my forehead! Folliculitis? , my a**! Well, that same day I read about DH and gluten intolerence. I started thinking to myself, I had a horrible wheat "allergy" as an infant, DH mostly affects white males in 20's-30's of Euro decent. Hey, this is me! Well, I started a gluten-free diet and within 2 weeks my scalp and face are about 95% clear without any antibiotics for the first time in 3 years. And just in case you are wondering, My GP tested me for diabetes, thyroid, kidney, liver function, CBC, HIV, HEPATITIS, and all where perfectly normal. I am an athletic and healthy male.
Here's the question for the class. I made an appoint with an allergist to try to confirm this gluten DH thing scientificly through labs/biopsy's ect, and to have some generlized food allergy tests done to confirm any other "foods "I need to avoid, as I am now 100% sure that this is a food thing. I have been gluten free for 2 weeks which means I will probably test a "false negative" to an antibody test if I am DH. Will my allergist understand this, will he still test me anyways, or will I mostly get written off as a loon. And no class, I will not go back on gluten for 6 weeks to test positive on the antibody test. that's not an option. It's nice to be "leprosy" free after 3 years and I intend to stay that way! :P Is there any benefit to an actual definitive diagnosis? I mean hell , if the gluten-free diet works, it must be DH... Please feel free to respond and tell me what a hypochondriac I am , how I am ignorant, or how I mispelled everything on here (I already know I mispelled 50 or so words, and my gramatical structure sucks too!) Believe me, I have heard it from Doctors for the past three years with this... I could care less... And finally I end with an up-note! Here's a joke for all you medical-net junkies(including myself)! What did the hypochondriac have written as an epitaph on his tombstone?... "See, I told you all I was sick!"



I'm going through exactly the same scenario, exactly. I've suffered from rashes, boils, on my face and scalp for the last 3 years. I've been gluten free for two week and they have cleared up 90% without antibiotics exactly like you.

This is my theory, we have had an incredibly low immune system because of celiac but we have carried on having gluten. We have took antibiotics ( which ruin the villi in the stomach with over use ) to deal with the skin problems and they have relieved them short term only for them to come back, because our immune systems are low we have been susceptible to staph and bacterial infections but never dealing with the cause of why we are susceptible.

Well now I have my answer, I'm getting some nasal antibiotics and making sure I haven't got it up my snout, I'm sticking to a incredibly strict gluten free diet ( I don't even want to be in the same room if someone farts and they eat gluten ).. lol And I truthfully believe I will be all right.

I hope it works for you to.
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#11 kareng

 
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Posted 28 July 2012 - 08:08 PM

I'm going through exactly the same scenario, exactly. I've suffered from rashes, boils, on my face and scalp for the last 3 years. I've been gluten free for two week and they have cleared up 90% without antibiotics exactly like you.

This is my theory, we have had an incredibly low immune system because of celiac but we have carried on having gluten. We have took antibiotics ( which ruin the villi in the stomach with over use ) to deal with the skin problems and they have relieved them short term only for them to come back, because our immune systems are low we have been susceptible to staph and bacterial infections but never dealing with the cause of why we are susceptible.

Well now I have my answer, I'm getting some nasal antibiotics and making sure I haven't got it up my snout, I'm sticking to a incredibly strict gluten free diet ( I don't even want to be in the same room if someone farts and they eat gluten ).. lol And I truthfully believe I will be all right.

I hope it works for you to. Celiac... I've shit it. lol

FYI The post you are responding to is 6 years old. Poster probably hasn't been on here in years.
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LTES

 
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#12 Carybear

 
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Posted 11 June 2013 - 04:55 AM

This is my theory, we have had an incredibly low immune system because of celiac but we have carried on having gluten. We have took antibiotics ( which ruin the villi in the stomach with over use

Actually, No and no. The opposite is true about the immune system. In people with celiac disease (which is an auto immune disorder) the immune system is too active, always on guard. Antibiotic over use kills the gut flora, which allows candida albicans to proliferate, which in turn atrophies the villi. They die, leaving tiny holes in the small intestine (leaky gut syndrome) where long and medium chain proteins cross the barrier into the blood, causing an immunogenic reaction.
it's better to research than theorize.
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#13 kareng

 
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Posted 11 June 2013 - 05:02 AM

This is my theory, we have had an incredibly low immune system because of celiac but we have carried on having gluten. We have took antibiotics ( which ruin the villi in the stomach with over use

 
Actually, No and no. The opposite is true about the immune system. In people with celiac disease (which is an auto immune disorder) the immune system is too active, always on guard. Antibiotic over use kills the gut flora, which allows candida albicans to proliferate, which in turn atrophies the villi. They die, leaving tiny holes in the small intestine (leaky gut syndrome) where long and medium chain proteins cross the barrier into the blood, causing an immunogenic reaction.
it's better to research than theorize.

 
 
I doubt antibiotics gave me Celiac.  I rarely got sick and only ever had small amounts of antibiotics a few times in my life (after wisdom teeth out, etc). Not sure where you get that info about antibiotics and candida being the cause of Celiac.  Could you provide some reliable resources (actual medical researchers not someone selling a product)?
 
Here is a little from a reliable source:
 
http://www.curecelia...than-a-weak-one
 
 
http://www.curecelia...e-immune-system
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LTES

 
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