Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Caffeine & Autoimmune


WhenDee

Recommended Posts

WhenDee Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

I can't be of much help because I abandoned caffeine long before gluten and everything else. It was my first intolerance :P

sandsurfgirl Collaborator

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.

Strawberry-Jam Enthusiast

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...

Kjas Newbie

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.

CR5442 Contributor

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

sa1937 Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Reba32 Rookie

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.

sandsurfgirl Collaborator

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.

Skylark Collaborator

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.

Open Original Shared Link

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

WhenDee Rookie

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...

Skylark Collaborator

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.

sandsurfgirl Collaborator

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.

  • 11 months later...
albybaby Newbie

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.

GottaSki Mentor

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,919
    • Most Online (within 30 mins)
      7,748

    SB Willow
    Newest Member
    SB Willow
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.