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Caffeine Allergy/Intolerance

I have had a serious problem with caffeine ever since I got the Gardasil vaccine. Whether or not the two are related, I have no clue, but I was an avid coffee drinker, soda drinker, what have you, before I got this vaccine. About two days after I received the vaccine I started to suffer something I cannot even accurately describe--my hands would tingle, I would feel like I was dying, I felt like I had the flu and I had a horrible fever. Beside the fact that I was having a bad reaction to the vaccine, I didn't realize that at the same time I was having a bad reaction to caffeine. All of the sudden, any time I had any coffee, soda or anything, I had a horrible panic attack and felt like, for lack of better words, like I was going crazy. I have suffered this since February of 2007. Just today I had HALF of a diet coke, no kidding, HALF, and the entire day couldn't even exist in my own skin. It is as if my body cannot metabolize it properly and it honestly makes my blood pressure go sky high---i'm talking like 150s or so without me even being anxious. What do I do??? What caused this?? Does anyone else have a similar experience??

From someone who is completely lost and feeling like they have no answers, there has to be someone else who has experienced what I have. And if not, then maybe I have no hope of anyone helping me explain what happened....I went to the dr. who administered the vaccine, who wouldn't help me, and countless others who dismissed my problems. But this is a last ditch effort to find someone else who either shares this problem or who can help me out.

Thanks.
194 Responses
Avatar universal
Hi,

Caffeine Allergy Symptoms




Caffeine allergy symptoms range from a minor rash to life threatening seizures. The severity of the reaction depends on what the person is actually allergic to and to what extent a person is allergic. Some of the reactions associated with caffeine allergies include difficulty breathing, shock, tongue, and facial swelling. These reactions are different than those associated with consuming too much caffeine which include jitters, headache, insomnia, and irritability. An uncommon component to caffeine that people experience adverse reactions to is tannins, but it does happen. Tannins are not only found in coffee and soda, but in chocolate and red wine as well. Adverse reactions to herbicides and pesticides used to grow coffee beans is a much more common culprit of adverse reactions. Keeping a diary of food consumed, physical and mental feelings each day, and physical activity will aid in discovering specific reasons for allergic reactions.
Caffeine allergy symptoms can be as subtle as tingling in the mouth, itchy skin, and minor swelling of the throat. People who have these reactions every day may not even notice them.
Many alternatives are available to replace caffeinated beverages and foods. Some people depend on drinking a warm beverage in the morning or throughout the day which can be replaced with chia tea, soy coffee, or Teeccino.
ref:http://www.christianet.com/asthma/caffeineallergysymptoms.htm


Avatar universal
Right, I get all that, I know that, but my question is, how does that just happen out of the blue? And it seems to have been triggered by the vaccine I got. I had been having caffeine regularly for years before that.

And it's not as cut and dry as that either. It's as if my body can't properly metabolize the caffeine, and I wind up with ungodly high blood pressure after having as little as half a cup of coffee or half of a soda and I feel like I'm dying. It's even made it so bad that I felt like I was going to pass out. What causes this??
Avatar universal
Kelly, I have the exact same problem.  Caffeine makes my heart race and gives me terrible panic attacks - and it came pretty much out of the blue.  I can't even take certain medications like Excedrin because of the caffeine content.

I don't have the symptoms the good doctor mentioned above, so I don't know if what I have can be classified as an allergy.  And I don't know what to tell you about why it happened so suddenly or what is causing it, but I figured you might take some comfort in knowing that you aren't alone.
Avatar universal
I don't have those symptoms either! That's why I was so frustrated when that was the only response I got. I was thinking, there has to be someone else who has this problem!! I felt horrible for a long time because I didn't realize it was caffeine that was the problem. I think somehow it built up in my system and I overdosed on it--have you read anything about caffeine overdoses and how that happens?

I'm so glad you wrote back to me! I've been so frustrated for so long about this and I kept trying to see if I could have a coke--but last week was the last straw. I had HALF of a diet coke and I felt like I was going to die (not really, but you know what I mean) for the rest of the day. So I've decided it must be some kind of real allergy or intolerance.

Did anything seem to trigger your allergy? how long have you had it?
Avatar universal
I can't remember doing anything different in my routine the week I suddenly was no longer able to drink caffeine.  One day I could drink it, and then a week later, after two panic attacks and feeling like my heart was going to explode, I figured out it was the caffeine.  It's been about four years now, and I know it's still there because around Christmas some idiot at Starbucks made me a fully caffeinated drink when I asked for decaf. I was on a subway train in New York when it hit, and I felt like I was about to explode out of my skin.

I have not read about caffeine overdoses, but I tended to only have one or two caffeinated drinks during an average day, so I doubt that was the cause of my issue.

The only thing I've found that makes sense online (I googled Caffeine intolerance - which was how I found you) was that people with anxiety disorders seem more susceptible to caffeine intolerance, something about it causing over-stimulation.   Anxiety disorders run in my family, and my mother, who has both an anxiety disorder and a heart condition, can also not drink caffeine. She just goes spastic if she does.

I haven't really tried to do very much research into the issue. Once I figured out what it was, I just avoided drinking caffeine.  I also stopped taking most cold and allergy medications because of the pseudoephedrine in them. Do you have a problem with those medications as well? They have a very similar affect on me.
Avatar universal
I don't really have any problems w/ pseudoephedrine--I have in the past, but it's usually few and far between b/c I don't take it too much.

That's really interesting about caffeine not being tolerated well by people who have anxiety disorders--I don't have a "disorder" per se, but I have had problems with anxiety before and I still do sometimes. I just get too worked up about things, but it's so much better now that I don't have any caffeine. I'm 24 now--the first time I ever had an anxiety episode was in college when I was about 19 and I had started taking advair and singulair for the first time for my asthma/allergies. I'm still convinced that that's what has opened the floodgates for me, so to speak.

As far as anxiety disorders go, different things can trigger the onset of them if you have a genetic predisposition for it, and for me that's what it was and I've had a problem with it ever since.

Sorry--I kind of went off subject, but the anxiety was never unbearable/unmanageable and I had always had caffeine without any problems. I will always remember the day everything hit me and it was just hell--I was driving to visit my parents and all of the sudden I felt like I couldn't even be in my own skin, just like you described. From there it was just a downward spiral--I was just practically crazy for months until I figured out I couldn't have caffeine, which just killed me--coffee was such a huge part of my day!!

And I can't even have decaf--at least you can do that. I can't have any caffeine at all :(

Everyone kept acting like I was being ridiculous when I mentioned a possible caffeine allergy or intolerance--even doctors!! I just think it's upsetting when you can't even trust your doctor to hear you out and accept the possibility that you have developed an allergy to something.
Avatar universal
Kelly, I'm not having the same symptoms as you regarding caffeine and I didn't receive the Gardasil vaccine but my story is somewhat similar to yours. I've been consuming caffeine for years, diet sodas, coffee, energy drinks and even caffeine pills that they sell at Walmart from time to time.



About two years ago something slowly changed. At night, when I just got into bed, as I'm about to fall asleep I become in an indescribable state. I'm not sleeping but not entirely awake. Then my body is kind of numb and at the same time it's like if there's irritability and aggressively going on inside my body, as weird as this might sound.



In the beginning I only had to get up, watch t.v. for a few minutes to get really awake and after that I could go back to sleep. After a while it didn't work anymore. I had to get up completely and it's like I needed something to counter fight what was going on in my body. So I ate sugary stuff. Then of course I thought that maybe I had diabetes. Nope, since then I had 2 complete health check up and everything's fine. And I also have a glucometer at home and monitor it regularly just to see and I haven't have any problem with my blood sugar level.



After a while, the sugar was not enough neither.



So I cut back the caffeine, even to down to 2 diet soda at 8 in the morning and still if I go to bed at midnight, it will do it!!



BUT, here's the unbelievable part. Is that let say I get up at 7 am. I consume 70mg of caffeine (2 diet sodas or 1 and half cup coffee) then I'm ok and I can even take a nap in the afternoon with no problem whatsoever!! And then the day go on, without me drinking anymore caffeine. But comes the night, even if I go to bed at 1 in the morning, bam, it does it again!



That happens everyday, either that I take a nap or not. I have been up sometimes for 18 hours and having not consuming caffeine for 16 and the same problem occurs.



And finally, now, during the day, I have another symptom, my jaws get stiff, you know like if you were angry at something...



So like I said the symptoms are not the same but like you, I've been consuming caffeine my whole life and all of the sudden boom...



The only medicine I take is Effexor XR and I've been taking it long before this problem occur.



Like you said, I rally wish someone could explain to us what's going on because sometime I'm feeling like I'm going mental!



I've talked to about 4 doctors and 5 or 6 pharmacist and none were able to provide me with a concrete answer!


Avatar universal
It doesn't sound weird. I can relate--even when I try to explain how I feel when I have caffeine, it's really really hard to put into words; so I usually end up sounding very strange and unbelievable. I've given up trying to explain it to doctors, because I know in my heart that I've developed an allergy to caffeine whether they want to recognize it or not. And there's nothing they can do for me other than tell me to stay away from it--so basically it all just comes down to doing what you know is best for you.

I was so mad about it for so long, but here lately I've just decided that the only thing I can do is either accept it and move on or not accept it and be miserable.

I hope you feel better--Have you ever looked up any side effects for Effexor?? I used to take SO MUCH medicine for my asthma and allergies for so long, and one day out of the blue developed a ton of weird symptoms--About a year later I stopped taking everything and all of my symptoms subsided. It's worth looking into.

Have you ever had any problems w/ anxiety/nervousness? I have issues w/ the stiff jaw thing also. It really got bad when I was pregnant, but it's gotten better since then. I say just try and cut out the caffeine completely for a few weeks and see if you don't feel better--and at the same time, see if effexor might be contributing to how you're feeling ;)
Avatar universal
Thank you for your advice.

I never had any "jaws" issues before, maybe one time or two in traffic lol but never had this problem...I was diagnosed with Disthymia in 2003 and been taking Effexor since so un less it slowly creeped in on me, I don't think that's what's causing my problem...

Of course the normal thing is to cut the caffeine completely. I did for a few days and it didn't seem to it at night (my problem) but I have to do it longer, like you said, for a few weeks to really see.

BUT, here's where I'm having so much difficulties. I never have been the most enthusiast and energize person so with caffeine in the morning, it give me a little boost to get me going. When I stop drinking it, I'm like a zombie lol That's why I'm having such a hard time stopping it.

So now, I'm in another vicious cycle, since I'm not stopping the caffeine, I recently started to take Zopiclone at night to help me fall asleep. But I hate pills, so I have to do something about this. The Effexor I've accepted it because I know that something wasn't right with me all my life and with it I'm doing much better. But this new problem, I don't need.

So what I will do is try to find if there are doctors that conducts food allergy test or something...Did you ever tried to find one to do this ?







Avatar universal
Trust me, from one not-morning person to another: You learn to live without the caffeine.  

Since I found this community, I've been doing research and been contacted by people with similar issues.  It is frightening the things that caffeine does to a person's body. Frankly, I think we're better off without it.  

There are doctors that do allergy tests. If you have a primary care physician, they can probably recommend someone for you.  Caffeine is not standard for allergy tests, so I don't know what the doctor might do.  

Someone could make a good research paper out of studying the affects of caffeine on people suffering from an intolerance.
Avatar universal
Trust me, from one not-morning person to another: You learn to live without the caffeine.  

Since I found this community, I've been doing research and been contacted by people with similar issues.  It is frightening the things that caffeine does to a person's body. Frankly, I think we're better off without it.  

There are doctors that do allergy tests. If you have a primary care physician, they can probably recommend someone for you.  Caffeine is not standard for allergy tests, so I don't know what the doctor might do.  

Someone could make a good research paper out of studying the affects of caffeine on people suffering from an intolerance.
Avatar universal
Who else have you talked to that has our problem? I tried to talk to a few people but never got a response back. I feel like ever since I developed my intolerance, I feel worse all around even when I'm not having caffeine. My anxiety/panic attacks are way more intense than they ever used to be, and with that my blood pressure is also so much higher than it was and I'm only in my 20s. It's just so weird. Have you noticed that you're a little different in general as well?

And I totally agree that someone could make a good research paper about this. I would love to be tested for the allergy, but I have a little baby at home and not much time to go pursue that.

I think I'm just doomed to be miserable. My body reacts to antidepressants the same way it does to caffeine pretty much, so I can't even take those to even out my mood :( I'm taking them to feel less anxious, not more. I'm so frustrated right now.
Avatar universal
Hey guys, this problem is not gonna leave me soon I think...Maybe it would be nice if we could talk some more about it...Anyway, if you're intersted, I could leave you my "msn"...let me know what you think about it...
Avatar universal
Kelly, I never really considered the caffeine intolerance as the catalyst for my increased anxiety. I always thought about it as being the opposite, but now that you've mentioned it, I have noticed that my anxiety is worse. As far as blood pressure goes, mine is actually slightly below average. But it certainly feels like my heart is going to explode out of my chest if I accidentally have caffeine.  

I've been contacted by people who have seen this forum but haven't spoken up. Not sure why, but I can dig up those messages, if you like.  It's basically more of the same strange symptoms.  

And Fulci, I agree we should chat more. It's nice to have others out there with my issues. I don't feel like such an oddity anymore.

I don't have MSN, but I do have AIM.
Avatar universal
Utopiaem, I have recently come to the same conclusion. I have an allergy to caffeine.

I have been drinking caffeine since I was 20 and suddenly at 28 it causes anxiety attacks. I had never had an anxiety attack before and was hospitalized for it. I had no idea what was going on. In hindsight I had drank an energy drink at work about an hour and a half before the symptoms onset.

I have had 5 attacks in total, all involved caffeine being take just prior to the onset. The last was Excedrin.

I became suspicious of caffeine after the second attack so I decided to experiment. I learned about anxiety attacks and knew that they wouldn't kill me, so I thought I would induce them, ride them out, and then take Valium if they got too severe.

That was my plan. They ALL got too severe. It happened like clockwork every time. I would first feel weakness in my arms and down to my hands. I would also find that somehow my breathing had changed and i would have hypoxia symptoms, feeling like there was no air to breathe because I had blown all the CO2 out of my system. causing me to be really short of breath.

I would move into the stage where I thought my heart was going to fail because it seems to be working too hard, and I get that feeling that this could lead to death. although  in my conscious mind I know thats unlikely, but just try to talk yourself out of that thought when you are experiencing a feeling that is telling you that you may die now.

I felt that I would pass out and my vision would deteriorate, muscular system  would be all wack,

and last be not least, the horrible feeling the I got in my chest that went up the back of my neck can be described as none other then anxiety! it is awful.


Many people might ask: "well if you were suspicious after the second time, why did  you test yourself 5 more times?"

The answer to that is I had to know, with scientific accuracy that caffeine was the cause of this termed disorder that I had never had before.

In there experiments there was one dependent variable and one independent variable.

drinking caffeine has six times caused sever panic disorder. a disorder that i did not have before caffeine. most likely it built  up over the years and now I am having a toxic reaction/allergy to it. I researched this and it is amazing connection

Stopping Caffeine intake for a month and no chocolate or other sweets that have caffeine. Get your life back. I was diagnosed with anxiety disorder, but now I don't use any medicine at all, just no caffeine. Just stay off the stuff and you will lose the panicattack response to caffine.

I hope I could contribute with my Experience. Gabriel
Avatar universal
I felt the same way and still do every time I have it. I miss coffee so much. I was about to be 23 when my symptoms got bad--it was right after I'd had a diet pepsi, and the few months before I had been downing caffeine like it was water. I felt like I was going to die--I felt like I needed to go and breathe in a paper bag, even though I had never known what that had felt like before. And then it was just a downward spiral because I kept having caffeine, not knowing that's what was causing my problems.

I would get tingling in my hands and feel like my body just trying to shut down or something.
Avatar universal
Just a few words on the caffeine issues... Mine started with cranial bleeds. Cavernous Angioma. Apparently, raw caffeine on brain tissue aggravates the **** out if it! Long story short -I was having seizures -of course I didn't realize it because they were not convulsive. I bring this up because some of the symptoms I am seeing around here with the caffeine remind me of different types of seizures. Just some thoughts... So, if you are finding this debilitating in anyway -I would get things checked out.

Best,
Avatar universal
after caffeine first started bugging me, i starting having horrendous headaches when i was trying to stop drinking coffee and everything. the doctor did a scan on my head and everything was fine--would that have caught any abnormalities?

how did you find out you had cavernous angioma? i've never heard of it. but i still don't feel quite right, even when i don't have caffeine. i just had a baby 3 months ago and all of the sudden, my body just feels so wrong. i'll get this strange feeling over my entire body and it won't go away for days. it's so hard to describe. but with that, my blood pressure has been high! and i'm only freakin 24. i keep going to the doctor and keep getting told that i'm fine, but i feel like there has to be some kind  of underlying condition...
Avatar universal
I also have the same intolerance - I get anxious when I drink coffee, my mother too. It started 4 years ago, now I am 24... I used to drink coffe before that, but never more than 1 cup a day with friends, so It was easy to stop drinking it after I clearly noticed that it disturbs me. I don´t thing that is a big deal, coffee is not healthy at all. It´s a sort of help to get rid of the nasty habit :)
Avatar universal
Thankfully I stumbled upon this! I have been experiencing a lot of these symptoms ever since I was the beginning of the year; I would get horrible panic attacks, weakness in my limbs, my heart rate would shoot up, and I would grow restless (especially at night). The doctors have repeatedly told me that it was "the tip of an ice berg of a cold or flu". Now, I used to have a rather large cup of blended coffee on quite a consistent basis and for a short period of time, I had stopped the habit and noticed that I felt better, and now I'm consistently drinking it, I have noticed the symptoms slowly reoccuring. I have had countless urine tests, CT Scans, EKG Test, Blood tests, Chest X-rays, etc. this year alone!  So, I'm going to assume that caffeine is the root of my problems.......
Avatar universal
Recently, my daughter 16 was laying down relaxing after taking a Midol (caffeine), eating ice cream and drinking tea(caffeine). She suddenly developed numbness in her tongue followed by tingling in her hands, then shortly after it tingling began in her feet, difficult breathing and rapid heart beat. Within half an hour the tingling was in her whole extremities. It continued until the next morning. We went to her doc, bunch of tests, nothing, it was gone the following morning. A few days later after eating Taco Bell and drinking Dr. Pepper she told  me that the backs of her hands were tingling again and her heart was racing again. I called her doctor again, she thought it was probably a food allergy. She did more blood tests including food and respiratory allergies. Everything came back fine. The Doc told me to have her only eat natural non processed foods. For one week she only ate natural and drank water, juice, milk. Then, I started to research allergies with these symptoms and caffeine allergy/sensitivity came up. I decided to do a test. I let her drink a caffeinated soda but told her that it was decaffeinated (in case it was mental). What do you know within ten minutes she told me it was happening again! I have NO doubt she is allergic to caffeine! Now, she is caffeine free. Its been two weeks with no reaction.

P.S. She has been drinking caffeine; namely Dr. Pepper since she was five years old. Pepsi "used" to be a staple in my house. Not anymore! she was never allergic until suddenly this year. I don't know why, but its a fact!
Avatar universal
It actually scares me to read these psts - it sounds like my life.  Before my "strange experiences", I drank tea every day, coffee occasionally, and coke a little more than occasionally.  I never had even a hint of problem.  In fact, I used to brag because I could drink a big glass of anything caffeinated and still go right to sleep.  My husband couldn't have anything caffeinated past 4pm.  But then the anxiety attacks began.  My heart started racing, I had dizzy spells, my arm would pain, and my chest pained so much that I was certain I was having a heart attack (at 31!).  When I went to the doctor my blood pressure was even a bit below normal, but I felt like it was racing!  I was exhausted all the time and I felt like I had a lump in my throat - like you get from trying not to cry.  My doctor was confused - he sent me for thyroid testing and lots of other blood tests.  Someone in my family suggested I try eliminating caffeine.  I did and I haven't had one problem since.  Actually I have had a couple of episodes after, in weakness, I had a half-cup of coffee.  The strangest thing about this is ,like the others on this board, it came out of nowhere!!
Avatar universal
I am glad to find this conversation. I too have been having something similar to this.
The "weird" feeling likr you are crawling out of your skin (cortisol), the racing heart beat, the sudden response to caffeine thou I have had caffeine daily for years! I too have thought I was going crazy.
The only thing I did find was that my adrenal glands were shot! Adrenal glands make hormones adrenaline, insulin, cortisol among others. I have found a holistic medical doctor that has tested me and has me on some stuff that I am finding very helpful but tonight I ate one of the kids halloween candy bars and my heart started racing terribly!
A GREAT book that shed some light on this is The Schwarzbein Principle 2 book. I wonder if there is a link between adrenaline overproduction by the adrenal glands and allergic reaction. Ironically I had some bloodwork come back that I had an allergic reaction going on. I wonder if it's an allergy to caffeine. In thebook I mentioned she says to stay away from ALL caffeine.
Avatar universal
I am also researching possible gluten intolerance to explain these strange episodes!
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