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

Reacting To Caffeine


JillianLindsay

Recommended Posts

JillianLindsay Enthusiast

Good morning everyone,

I've been gluten-free for 6 weeks now! *bows* :) and sadly, sitting here without a cup of coffee :(

Ever since going gluten-free I have begun to react to coffee. I had a lactose intolerance test done and it was negative, so it's not the milk. Sugar/sweetener doesn't bother me when sprinkled on my hot breakfast cereal or in decaf coffee.

I don't get a "glutened" feeling from it, just terrible fatigue (like the caffeine crash, but greatly exaggerated). Could it just be that my system is now absorbing the caffeine more and so I'm getting more into my system than I was previously used to?

I've stayed away from it for two weeks and am wondering how long I should wait to do another test run and see if it causes the fatigue again? I know a caffeine addiction isn't terribly healthy, but I don't smoke and I'm an athlete, so I'm otherwise very healthy... and I need my fix! :) I'm going back to school full time in the fall and don't want to study without my coffee! I'm emtionally and psychologically addicted lol

Did anyone else have a similar experience? Tea (that has 1/3 the caffeine of coffee) doesn't seem to bother me.... is there something that is only in caffeinated coffee (aside from the caffeine) that I could be reacting to?

Please help! I miss my morning cup of Joe!

Thanks :)

Jillian


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



Celiac.com Sponsor (A8-M):



Gfresh404 Enthusiast
Did anyone else have a similar experience? Tea (that has 1/3 the caffeine of coffee) doesn't seem to bother me.... is there something that is only in caffeinated coffee (aside from the caffeine) that I could be reacting to?

To answer your question, no, I do not think so. Caffeine is a drug and is a known irritant to the gut lining. I would wait at least 6 months before trying it again, sorry.

That does explain why Tea does not bother you.

The ultimate test would be to drink decaffeinated coffee and see if you have any issues.

JillianLindsay Enthusiast

Yes, I have been drinking decaf with no problems. *sigh* I was hoping for a different answer lol but I figured I'd have to give up my morning coffee for a little longer. Ah well, fruit and water in the AM is much healthier anyway :)

To answer your question, no, I do not think so. Caffeine is a drug and is a known irritant to the gut lining. I would wait at least 6 months before trying it again, sorry.

That does explain why Tea does not bother you.

The ultimate test would be to drink decaffeinated coffee and see if you have any issues.

linuxprincess Rookie

This sounds crazy, but try switching brands.

I have an issue reacting to certain brands of coffee. They might use straw bags (made from wheat shafts) to store and dry the beans in or they might be grown near wheat.

Some Celiac's have a reaction to wine because the cask it was stored in had it's lid glued back on with traditional wheat glue, thus contaminating the wine. So a similar situation may be going on with your morning java.

Also, do you react to cheese and milk at any other times? A lactose intolerant test will come up negative to someone who is reacting to Casein, a molecule in milk that looks strikingly similar in structure to that of the gluten molecule. Many people are so reactive to gluten, that their body will attack the Casein just the same, even though its something totally different. Of course, if you have no other problems with milk or cheese, then I would not worry about it, but it is something to think about.

Hope you get to drink your morning coffee again soon!

Keep us posted!

SteubensMom Newbie

JillianLindsay,

I went through what you are describing with coffee. I was a two cup a morning girl until I became pregnant with our first child. I was told I could have one cup in the morning and he would not be affected by it. I, however, was! I switched to black tea during my pregnancy and decaf once I was nursing him because caffeine would give him horrible gas and screaming fits. I kept up that pattern through my next three pregnancies. After weaning our fourth and last child from nursing I went back to my beloved coffee. Not a good plan! I was sick as a dog GI-wise and I was so hyped up I felt like "Monster Mommy."

Being a Starbucks lover, I switched to Chai lattes with extra pumps of chai for my fix. At home in the morning I alternate between 2-3 tea bags of black tea with TJs FF vanilla creamer or 2 bags of green tea with a lovely lavender syrup.

Once in a while I can handle coffee but only if it is organic coffee. Organic coffee does not give me GI problems, but other coffees do.

Hope this helps!

Darn210 Enthusiast

Just a suggestion for something to try . . . my friend always buys her favorite coffee in both decaf and full? caf versions. Then she mixes the two at home so that her coffee has half the caffeine.

JillianLindsay Enthusiast

Thanks so much everyone for your suggestions -- much appreciated! :)

Princess -- No, I do not react to cheese or milk or any dairy (at least I've got that going for me!)

S's Mom -- I just figured out that Starbucks has a lot of celiac-friendly beverages, so I will venture out and try some new teas on for size

Janet -- I was doing that before when I was trying to cut down on caffeine, so maybe I can start doing that again. Thanks for the reminder!

Cheers,

Jillian


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



Celiac.com Sponsor (A8-M):



serebus Newbie

I have been going through a similar experience. Diagnosed about 3 months ago and have been going on and off with coffee and tea since then. I love my morning coffee but it was just too hard on the gut. I would get a painful gut, belching and strong fatigue - yawning, etc. So eventually, I have just had to sadly cut it out. I start each morning with water/lemon/stevia. I had to give up for awhile. Hoping that maybe after six months/year I'll be able to have it again. Honestly, it's probably better for the system anyway. After years of dealing with undiagnosed celiac, I've been told that there is great potential for damage to the adrenal system, so in this healing period, cutting out caffeine is probably a smart thing in the long run as our bodies heal.

Thanks for the posting!

JillianLindsay Enthusiast

Thanks for sharing. I'm glad I'm not the only one -- misery loves company ;)

I've been doing decaf these days and am probably going to try half-caf next week when I'm back to school *fingers crossed* -- I need caffeine for my 8am classes!

Good luck to all us coffee lovers :)

Jillian

I have been going through a similar experience. Diagnosed about 3 months ago and have been going on and off with coffee and tea since then. I love my morning coffee but it was just too hard on the gut. I would get a painful gut, belching and strong fatigue - yawning, etc. So eventually, I have just had to sadly cut it out. I start each morning with water/lemon/stevia. I had to give up for awhile. Hoping that maybe after six months/year I'll be able to have it again. Honestly, it's probably better for the system anyway. After years of dealing with undiagnosed celiac, I've been told that there is great potential for damage to the adrenal system, so in this healing period, cutting out caffeine is probably a smart thing in the long run as our bodies heal.

Thanks for the posting!

  • 2 weeks later...
JillianLindsay Enthusiast

I have a confession to make... over the long weekend (Labour Day) I went to the cottage with my in-laws. They are HUGE coffee lovers! It was sort of a resort cottage place with a restaurant. At breakfast the waiter just brought us a huge carafe of coffee instead of repeatedly coming over to refill our mugs! So, of course, I indulged and had a couple of cups each day at breakfast. The first day was fine, I only had half a cup with no problem... the second day I had a full cup (and a bit) and the fatigue was astounding :( I spent the rest of the day in bed reading and was too tired to do anything at all. I don't think I got glutened because I had no other symptoms (no GI problems or stomach pain, no brain fog, nothing but fatigue) and the head chef there came to speak to me personally before every meal :) He was so nice & very knowledgeable! Ok and also cute. My hubby teased me about all the attention I was getting (hehe). But I digress...

I am back at school and have remained coffee free all week, but with great bitterness :angry: All of my friends are drinking delicious coffee while I sip water (albeit more healthy, sadly tap is water neither caffeinated nor coffee-flavoured).

Does anyone know of actual gluten-free coffees available in Canada? I know coffee beans are naturally gluten-free, but apparently some people react to some brands... what brands do people use that they don't react to? Perhaps I can try it half-caf and see how that goes.

And yes, coffee really is this important to me! -_- lol

Thanks for your help :)

Jillian

This sounds crazy, but try switching brands.

I have an issue reacting to certain brands of coffee. They might use straw bags (made from wheat shafts) to store and dry the beans in or they might be grown near wheat.

Some Celiac's have a reaction to wine because the cask it was stored in had it's lid glued back on with traditional wheat glue, thus contaminating the wine. So a similar situation may be going on with your morning java.

Also, do you react to cheese and milk at any other times? A lactose intolerant test will come up negative to someone who is reacting to Casein, a molecule in milk that looks strikingly similar in structure to that of the gluten molecule. Many people are so reactive to gluten, that their body will attack the Casein just the same, even though its something totally different. Of course, if you have no other problems with milk or cheese, then I would not worry about it, but it is something to think about.

Hope you get to drink your morning coffee again soon!

Keep us posted!

jitters Apprentice
I have a confession to make... over the long weekend (Labour Day) I went to the cottage with my in-laws. They are HUGE coffee lovers! It was sort of a resort cottage place with a restaurant. At breakfast the waiter just brought us a huge carafe of coffee instead of repeatedly coming over to refill our mugs! So, of course, I indulged and had a couple of cups each day at breakfast. The first day was fine, I only had half a cup with no problem... the second day I had a full cup (and a bit) and the fatigue was astounding :( I spent the rest of the day in bed reading and was too tired to do anything at all. I don't think I got glutened because I had no other symptoms (no GI problems or stomach pain, no brain fog, nothing but fatigue) and the head chef there came to speak to me personally before every meal :) He was so nice & very knowledgeable! Ok and also cute. My hubby teased me about all the attention I was getting (hehe). But I digress...

I am back at school and have remained coffee free all week, but with great bitterness :angry: All of my friends are drinking delicious coffee while I sip water (albeit more healthy, sadly tap is water neither caffeinated nor coffee-flavoured).

Does anyone know of actual gluten-free coffees available in Canada? I know coffee beans are naturally gluten-free, but apparently some people react to some brands... what brands do people use that they don't react to? Perhaps I can try it half-caf and see how that goes.

And yes, coffee really is this important to me! -_- lol

Thanks for your help :)

Jillian

You sound exactly like me! I am SO upset over my coffee making me sick. It's been this way for three years for me now... I'll stay away from it for awhile and then I'll give in and have it. The first couple of days are awesome, I'll feel wonderful and energetic. Then slowly it catches up to me. All over horrible body pain, fatigue, grumpiness, sick to my stomach, then extreme fatigue, brain fog, etc. I seem to be ok when I drink pop but I don't want pop. I WANT coffee.

I've tried all different brands, as well as decaf, changed the way I make it and what I added to it. Nothing worked. I'd always be ok for a few days then *bam* I'd be sick again.

Here are my theories:

A) I have leaky gut and the coffee beans are making it much worse.

B) The caffeinne is too much for me in coffee, which is why pop seems to be ok for me.

C) My adrenal glands are shot and coffee makes them worse.

D) All the above

I'm pretty sure it's theory D for me. Right now, I'm feeling like crap after having coffee for the last couple of weeks. I'm wondering how much of this I can take. Like I said, I have been dealing with this for THREE YEARS. I've gone to 13 different doctors and so far all my tests are normal. So, on the days I am strong I truly have to put it in perspective... is coffee worth it?? And the answer is no. Other days though I pout and think to myself that it's not fair. I've already given up gluten... why coffee too?

So for today I am going to be strong and tell myself my affair with coffee is once again over. Tomorrow morning I'll drink Stash brand Double Chai Spice Tea and while it's not the same, it's strong enough tea that it doesn't feel like I'm just drinking hot water. I try to always have a few bags in my purse so that when I'm out and about I can just order a cup of hot water for it. At first it was embarrassing to order but really, no one cares if that's all you order.

I'm thinking there should be a support group for people trying to give up coffee.

If you find something that works for you, let me know!

JillianLindsay Enthusiast

So good to know that I'm not alone -- thank you!

I broke down and had coffee again today. I had to be up at 6:30 all week (including today, a Sunday!) and bloody well deserved it lol. I felt a bit of fatigue and weakess, but the worst symptom this time was anxiety. Yikes, the anxiety!

I used to drink anywhere from 2 to 6 cups a day and not have a problem. Now I have one large coffee and am all jittery (I like the name by the way ;)).

Luckily I can have decaf, but with early class every day I want my caffeine! And I want it on COFFEE too, not pop or tea!

When I put it into perspective, yes it's not worth it and may be a bit silly to get so worked up over coffee, but it's my only vice and I've earned it so there :P

I like the idea of having a few tea bags in your purse, I could always get hot water on campus and fuel up when I need to.

Thanks for sharing/commiserating with me! :)

We'll start our own darn support group right here lol and if I find something that works I'll be sure to let you know!

Cheers,

Jillian

You sound exactly like me! I am SO upset over my coffee making me sick. It's been this way for three years for me now... I'll stay away from it for awhile and then I'll give in and have it. The first couple of days are awesome, I'll feel wonderful and energetic. Then slowly it catches up to me. All over horrible body pain, fatigue, grumpiness, sick to my stomach, then extreme fatigue, brain fog, etc. I seem to be ok when I drink pop but I don't want pop. I WANT coffee.

I've tried all different brands, as well as decaf, changed the way I make it and what I added to it. Nothing worked. I'd always be ok for a few days then *bam* I'd be sick again.

Here are my theories:

A) I have leaky gut and the coffee beans are making it much worse.

B) The caffeinne is too much for me in coffee, which is why pop seems to be ok for me.

C) My adrenal glands are shot and coffee makes them worse.

D) All the above

I'm pretty sure it's theory D for me. Right now, I'm feeling like crap after having coffee for the last couple of weeks. I'm wondering how much of this I can take. Like I said, I have been dealing with this for THREE YEARS. I've gone to 13 different doctors and so far all my tests are normal. So, on the days I am strong I truly have to put it in perspective... is coffee worth it?? And the answer is no. Other days though I pout and think to myself that it's not fair. I've already given up gluten... why coffee too?

So for today I am going to be strong and tell myself my affair with coffee is once again over. Tomorrow morning I'll drink Stash brand Double Chai Spice Tea and while it's not the same, it's strong enough tea that it doesn't feel like I'm just drinking hot water. I try to always have a few bags in my purse so that when I'm out and about I can just order a cup of hot water for it. At first it was embarrassing to order but really, no one cares if that's all you order.

I'm thinking there should be a support group for people trying to give up coffee.

If you find something that works for you, let me know!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    3. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

    4. - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    5. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,405
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    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

    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
×
×
  • 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.