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Caffeine & Autoimmune


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#1 WhenDee

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Posted 22 November 2011 - 11:08 PM

Right now I am reading a really interesting book called Caffeine Blues.

What has gotten my attention is how frequently the author goes back to auto-immune problems being exacerbated or even CAUSED by excessive caffeine.

It works two ways - caffeine exhausts your adrenal glands so that your body either can't respond to allergens or over-reacts. It also destroys the mucosa lining in your gut ("leaky gut" anyone?) so that food gets through the lining under-digested and your body responds to it as an allergen.

There are other things, but those are the two things that stuck out to me.

More than anything, though, I'm really concerned about my own auto-immune problems and all the various ways caffeine could be making it much, much worse. Not to mention the dependency on it means that I have such terrible problems getting out of bed in the morning, so I don't get up early to exercise, which contributes to feeling even crappier and having more weight issues.

The authors points out study after study that shows there is NO "moderate" amount of caffeine. Different people are affected in different ways, but no one gets off scot-free.

Today I'm going to start working on going caffeine-free. It takes three weeks to rid it from your system, according to this guy (that seems to agree with my previous experiences), so sometime around the New Year I'll try to report back on how it has gone - how it has affected my stomach problems, energy problems, etc.

I'm hoping to draw some attention to this, since EVERY person on this board has an immune problem! And hoping to hear from anyone here who has gone caffeine-free and seen an improvement. Wish me luck! And I'll report back.

In the meantime, the book is Caffeine Blues by Stephen Cherniske. I'm in no way affiliated with the author, etc. I read many nutrition & health books, and find most of them to be total junk. I only pay attention when the facts presented are backed up by heavy research, and this book is full of HUNDREDS of references to research published in respected journals. Otherwise I wouldn't give it a second glance.
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#2 mushroom

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Posted 22 November 2011 - 11:34 PM

I can't be of much help because I abandoned caffeine long before gluten and everything else. It was my first intolerance :P
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Citric acid free June 2009
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#3 sandsurfgirl

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Posted 22 November 2011 - 11:44 PM

Research can be spun to make it mean what you want it to. I have a very hard time believing that caffeine causes autoimmune diseases. There are also studies that show that moderate amounts of coffee is good for you and tea... well there are so many studies on the benefits of black and green teas which both contain caffeine.

What is his background? Sounds like hyperbole to me. If you want to cut it, I'm sure it's not going to hurt you, but I wouldn't give up my coffee and tea over that.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#4 Strawberry_Jam

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Posted 22 November 2011 - 11:49 PM

I've never really been able to tolerate caffeine, so I've mostly been caffeine-free by default most of my life. I can handle about one cup of coffee without overt symptoms. At the second cup, my stomach turns, I get jittery and shaky if my stomach is empty, and I get very lethargic and sleepy but unable to truly fall asleep. As a child a drop of caffeine after 12 noon would keep me up for a good chunk of the night.

Altho, I can tolerate green tea pretty well, and other milder caffeine sources, but I haven't been partaking of late. When I first got to Ireland I was taking one cup of black tea every morning and it was really nice, actually, but I stopped for various reasons. I haven't noticed a difference being 100% caffeine free except that it's ever so slightly harder to get going in the morning...
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gluten-free 25 Feb 2011
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dairy-free 30 August 2011 (roughly)

22 yrs old
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#5 Kjas

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Posted 23 November 2011 - 03:11 AM

I have a caffeine intolerance which has gotten progressively worse over the last year to the point now that I can't tolerate it at all really. I gave up all soda, tea and coffee about 9 months ago.

Three weeks ago I went to the cinemas and got a frozen coke for the first time in 3 years. I was so sick for the next however many days it wasn't funny. I've never been good with soda in general but this was the first time I was throwing up multiple times and still sick more than three days later.

I feel ten times better off the caffeine and soda, which is a pity because I really love coffee. Whether the intolerance is inherited or simply a result of my stomach lining being really screwed up, I'm not sure but at this stage I think it's a little of both.

For most people with celiac disease or a gluten intolerance, I think it would probably be mainly due to the gut lining. While dealing with your intolerances and things that will make them worse is a step forward, it is not the same thing as healing our gut which is really what needs to be done in order to feel well again.
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#6 CR5442

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Posted 23 November 2011 - 03:34 AM

I had awful seizure type migraines on coffee. Gave up coffee before gluten and though I still had migraines on gluten they were completely different. Now I don't feel like I'm forcing myself to run on empty. When tired I rest.

Coffee really messes with your endocrine system, cortisol levels etc. I think even after nearly 5 months of not drinking it my body is still recovering from the adrenal exhaustion effects! I have the book. It is a bit cursory in places and doesn't fully explain things but I guess if you feel better off of coffee than on then that can only be a good thing! :P
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#7 sa1937

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Posted 23 November 2011 - 06:52 AM

Research can be spun to make it mean what you want it to. I have a very hard time believing that caffeine causes autoimmune diseases. There are also studies that show that moderate amounts of coffee is good for you and tea... well there are so many studies on the benefits of black and green teas which both contain caffeine.

What is his background? Sounds like hyperbole to me. If you want to cut it, I'm sure it's not going to hurt you, but I wouldn't give up my coffee and tea over that.

I so agree with this. Guess I should google Stephen Cherniske's credentials. I suspect they may be "interesting". I've been around too long to believe everything I read.

WhenDee, if you want to give up caffeine because of what Stephen Cherniske says, that's fine with me. And I know that some people do not tolerate caffeine (or hundreds of other random things). I've been drinking coffee for over 50 years so am not about to give it up now.
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Positive Celiac Blood Panel - Dec., 2009
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#8 Reba32

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Posted 23 November 2011 - 08:33 AM

a quick Google for his name shows that he is "Chief Scientific Officer" for some MLM scheme, and his degree in nutrition is in question from a non-accredited university.
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#9 sandsurfgirl

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Posted 23 November 2011 - 09:47 AM

He does have a master's degree in nutrition, but it still sounds like a bit over the top to me. I'd like to know how coffee causes adrenal exhaustion and how they proved that. I'm dealing with adrenal issues now and they are really hard to diagnose and figure out. I'm seeing a famous endocrinologist who is a researcher and teaches at UCLA and at another medical school and even he doesn't have all the answers.

Adrenal fatigue isn't really proven either and it's a controversial subject. Adrenal crisis, Addison's disease and Cushings are proven and hypoalosteronism which is what I have but I'm not sure how they would prove a link between "adrenal exhuastion" and coffee. I'd like to see research on coffee drinking and people with verifiable diseases.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#10 Skylark

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Posted 23 November 2011 - 12:05 PM

a quick Google for his name shows that he is "Chief Scientific Officer" for some MLM scheme, and his degree in nutrition is in question from a non-accredited university.

Nice Googling, Reba!

Our puritanical, drug-bashing society really wants to make caffeine into a villain. It's just not so simple. Caffeine is anti-inflammatory, and coffee drinking may protect against Alzheimer's. Caffeine is also immunomodulatory and the latest idea is that it might help folks with TH1 dominant autoimmunity.
http://www.ncbi.nlm....pubmed/16540173

As for so-called adrenal fatigue, don't even get me started. :angry:
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#11 WhenDee

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Posted 24 November 2011 - 10:17 AM

It's interesting to me how defensive people get about their coffee!

The same site that mentions his degree ALSO states that the university was accredited when he received his degree, and lost its accreditation 15 years after his graduation, after an administration change.

But it wasn't Cherniske who convinced me. It was all that pesky science he used, and the many, many studies he referenced. I paid most attention to the parts regarding gut and immune problems.

If it isn't for you, or you're too addicted to even consider it, that is nothing to me. I posted because I thought it might help someone. But you don't have to make ugly comments or try to discredit it based on faulty information. You could always just IGNORE the post, you know. You might be discouraging someone else who would really benefit from the info.

I'm willing to try anything to improve my health. I'm not going to compromise it by clinging to a drug addiction. If it turns out going caffeine free doesn't help my stomach, well, at least I'll be sleeping better and have whiter teeth!

PS... Out of curiosity I searched Pubmed (referenced above) and found SEVERAL published studies that say caffeine affects the immune system in numerous negative ways...
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#12 Skylark

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Posted 24 November 2011 - 10:45 AM

It's interesting to me how defensive people get about their coffee!

The same site that mentions his degree ALSO states that the university was accredited when he received his degree, and lost its accreditation 15 years after his graduation, after an administration change.

But it wasn't Cherniske who convinced me. It was all that pesky science he used, and the many, many studies he referenced. I paid most attention to the parts regarding gut and immune problems.

If it isn't for you, or you're too addicted to even consider it, that is nothing to me. I posted because I thought it might help someone. But you don't have to make ugly comments or try to discredit it based on faulty information. You could always just IGNORE the post, you know. You might be discouraging someone else who would really benefit from the info.

I'm willing to try anything to improve my health. I'm not going to compromise it by clinging to a drug addiction. If it turns out going caffeine free doesn't help my stomach, well, at least I'll be sleeping better and have whiter teeth!

PS... Out of curiosity I searched Pubmed (referenced above) and found SEVERAL published studies that say caffeine affects the immune system in numerous negative ways...

Lashing out at all us "addicts" is not exactly constructive.

Do you realize that book was published in 1998? The research in it is over 13 years out of date. Also did you look at his other books? This guy likes to make money off fad science. He has a whole book on using DHEA for crying out loud. That stuff is dangerous.

For every article in Pubmed that you find about caffeine and methylxanthines that is negative, I'll find one that is positive. Your book is "spun" negative but that doesn't make it right. It just makes it profoundly biased. I can pick and choose articles from Pubmed to support just about any hypothesis and make it look scientific. It would be easy to write a book on the health benefits of coffee consumption. I could even slap my Ph.D. from a much better university on the cover. It wouldn't sell though. People are looking for a villain at the bookstore and in puritanical America, drugs are an obvious choice.

Also, there is genetic polymorphism in adenosine receptors and in P450 metabolism that profoundly affects a given individual's response to caffeine. I'd be willing to bet money that almost none of the studies this fellow cites take those into account when selecting the study populations or evaluating dosages. A lot of caffeine research is essentially comparing apples to oranges.

If caffeine makes you feel ill, definitely don't drink it. I do genuinely hope that you have found something that helps you feel better. But please don't come here telling us that it's the be-all and end-all cure for autoimmunity based on one fellow's obviously biased and very out-of-date book.
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#13 sandsurfgirl

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Posted 25 November 2011 - 12:07 AM

When-dee I was just discussing and I'm sorry if I hurt your feelings. To me it was an interesting discussion with differing points of view. I'm sorry if you felt attacked because I don't think anyone intended that.

I actually gave up coffee with all my health issues right now because it didn't feel good drinking it. I'm drinking black tea in the mornings instead. The research on the benefits of tea is extensive and I haven't heard it disputed either.

But you have to do what works for you. Coffee and tea are God given natural substances and for many people they are fine. If you don't feel good drinking them and you feel better caffeine free then do it. Personally I am moderate in my caffeine intake. I do think that people go way overboard and drink far too much of it. They are compounding it by drinking coffee, tea and soda. For me I have two servings of caffeine. One cup of tea or coffee in the morning and one in the afternoon if I want a pick me up.

I never drink soda because I do believe soda is poison. That's the study I want to see. Rates of cancer and other diseases among high soda drinkers. I'd like to see studies on diet soda too. I think diet soda is so bad you may as well just drink a little bit of cyanide everyday as drink diet soda. I won't touch it. Soda is pure chemicals and either sugar or fake sugar- more chemicals. Except for taste, it has not one redeeming value, it can't be found in nature, and I've never seen a study that actually says it's good for you. Sadly, soda is such a staple in our society, they might not be able to find very many people who don't drink it to compare with the heavy drinkers.

But that's me. There are others who will say their soda is fine and I say have at it.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#14 albybaby

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Posted 15 November 2012 - 10:00 PM

I believe it. I used to drink coffee a lot. Maybe a Dunkin Donuts extra up to 4 times a day sometimes. Sometimes more. Then one day, I was home. I made some fresh coffee from some beans and I added it to a french press with some clean water.

I had a really bad panic attack. I had to go to the hospital. I thought the world was ending and I started roaming around, fearing for my life and with high anxiety. That was years ago. Every now and then I try some coffee beans and I get the same thing. I've been to the hospital at least 2x and I saw some doctors and a psychiatrist. They don't know what's wrong with me. I psychiatrist gave me a diagnosis of "mood disorder" which is sooooo broad a conclusion. They said that they could offer me some drugs and meetings and counselling sessions but I declined.

I decided to improve my diet and lose a lot of weight and stay off the coffee. Since then I've been better. If the coffee is the cheap kind and its DECAF I only get a little bit of the jitters. But anytime I eat lots of chocolate, I get anxious feelings and I'm afraid to fall asleep because I think I might die.

Anyway, that's the short of it. I'm going to take coffee and chocolate more seriously and stay away from sources of caffeine. I wouldn't wish my condition on anyone. I was so strong when I was young. Now I feel like I have a broken body.
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#15 GottaSki

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Posted 15 November 2012 - 10:15 PM

Welcome albybaby!

Wanted to let you know the original poster hasn't been back since their last post in this thread a year ago. There is no problem adding info to older threads - just start a new one if you are wanting to start a conversation.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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