Coffee, coffee, coffee…well, not any more

I’ve known for a long time that coffee is not compatible with porphyria.  But, I really like coffee and was able to get away with it for a long time.   I’ve become so sensitive to it, that I had to quit.   It’s been 2 weeks now; and, I am feeling much better.  It really is an addiction.  One thing that I’ve found that helps is to replace it with hot green tea (organic, of course).   Having a cup of coffee with my wife, a friend, or business associate is an important routine for me.  I can still take part!

I should have quit earlier.  It was easy for me to justify, as I have had to give ups so many other things.

It could be worse.

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15 Responses to Coffee, coffee, coffee…well, not any more

  1. Heather says:

    I too have Porphyria. I was diagnosed in June at age 38. I found my first blister on June 5, and since then I now have at least 20 blisters/erosions. I have been through 10 phlebotomies so far. Still going through weekly phlebotomies currently. Why do you say you can’t have coffee? It wasn’t on my long list of things I can’t consume. Can you explain why you can’t have it? I drink one cup/daily.

    • Greg says:

      Hi Heather,

      I’ve known for a long time that coffee is not good for porphyria. And, I’ve noted that sometimes I have felt a bit “off” after having a cup; but, it has gotten much worse. So, I’ve added it to my list of bad foods. I’ve been trying to find a replacement; but, most teas cause porphyria feelings.

      I’ve categorized foods, supplements, etc through meticulous food and activity logs. There are probably foods that I avoid unnecessarily; but, the pain of choosing wrong is significant.

      I originally thought I had AIP; but, it turns out to be variegate porphyria. The cutaneous effects only show after I get a sunburn that is sensitive to touch. I probably have a build up of porphyrins when I get a little pink; but, it hasn’t been noticeable…then, again, I am always dealing with managing porphyrins.

      I have no experience with cutaneous porphyria; but, you might want to experiment with cutting out coffee.

      I am sorry that you are going through these troubles. Hang in there.


  2. Caro Rebora says:

    hello Greg!! It happened to me too. I finally quit coffe and I miss it so much.. I replaced it with earl grey tea, and it doesn´t feel the same but I can live with the idea.. I tried with everything, instant coffe, malt coffe, coffe figs..and nothing resulted. All of them made me feel very bad. So I´m trying to find the best tea in the world to feel happy when I really need a coffe..
    Of course it could be worse..but I understand how you feel
    hugs from here 🙂

    • Greg says:

      Hey Caro!

      I am sorry to hear that you had to go through it, too.

      I never thought it would be so hard! I was expecting a couple days of yearning / discomfort. Well, the physical cravings are gone; but, I still really, really, really want a cup of coffee! I haven’t had much luck with tea; a lot of them cause porphyria problems. Right now, the only safe type is Bigelow organic green tea.

      As you say, it can be worse.

      Good to hear from you. I hope you are well.


    • ryan carty says:

      I also had to stop drinking coffee as well which sucks because I love the taste of it especially with creamer use to drink 2 cups a night shift when I was a respiratory therapist. Tried decaf still couldn’t do it I can’t do any caffeine at all. I’ll have to try the green tea I too also drink earl grey and chai. Stay far away from chamomile I think the combination of the chamomile and putting turmeric in it brought on an attack where I got the cutanea tarda during the attack as well. Also be careful of high sulfur foods too.

  3. Tim says:

    Hello, I am looking for help in reducing my symptoms of AIP. I was recently DX this past June. For almost 10 years I was told that I had Anxiety, PTSD, Panic disorder and many other things. A went to a non military clinic and they did blood, urine and fecal test. When the results came back I was sent to Duke where they wanted me to be a regular patient of theirs. Due to the traveling problem, I settled for a hematology/ Oncology clinic in our town. I have asked my doctor how do I manage my attacks through diet etc. She stated just increase carbs. I am not doing well, does anyone here have advice. I read your it’s MY responsibility blog. Can you please go more in depth, on what I should be doing? Thank you so much for your time!

    • Greg says:

      Hi Tim,

      I can only tell you about what I have done that works for me. Everyone is different.

      On the top of my website is a picture and below the picture are a line of words. Click on “Diet” and “Food Log”; those are good starting points. Also, something that has helped me tremendously is using glucose tablets and powdered glucose. My reasoning is…the first thing a knowledgeable doctor will do for a patient having a porphyria attack is to administer IV glucose and painkillers…so, why wait until the situation is that bad? When I feel porphyrins building up, I chew on glucose tablets or stir some glucose powder into some water; it generally helps me. Tablets are available at Publix, Target, Walmart website, Amazon, etc. The glucose powder is available on Amazon.

      I hope that this helps.


      • Kate Davis says:

        What brand and how much of the glucose do you take? I am sp ill and trying to stabilize.

        • Greg says:

          The tablets that I have are Up & Up; I think that I got them from Target. Walmart sells glucose on line. Walmart and Target have the best prices for glucose tablets. Tablets are great to carry when away from home. While at home, I try to use glucose powder, as it is much cheaper. You can buy this off Amazon. The powder on Amazon come in a huge range of prices; I look for the lowest price 10 pound bags.

  4. Tim says:

    Thank you! How do you know when they are building up? I can now tell when my nerves in my arms start jumping and stomach is a little upset that I need some quick sugar. With that said I woul love to know the signs earlier.

    • Greg says:

      Hi Tim,

      For me…I have a few indicators; so, if any of these happen, I start taking action.
      – eyes get droopy
      – hands shake
      – thinking gets foggy
      – irritability
      – apathy
      – stomach starts feeling uncomfortable

      Stomach discomfort is really a bad sign; because, I’ve let it progress too far and recovery is longer.

      I hope this helps you. Everyone is different; so, it is really up to you to figure out how to stay ahead of it. My wife helps a lot, as she can often tell before I can that I am having problems. It also helps that some of the people that I work with keep an eye out for me.


  5. Shery says:

    This might not work at all…. but I can ONLY drink organic coffee and it can’t be brewed strong – just med. And I do fine with it… I might add that some people do react to Earl Grey Tea due to the bergamot in it which is an herb. I know of some people with porphyria that have had bad reaction to it.

    As for coffee – remember it dumps the liver of its stored glucose and it can detox the liver – both of which can have an interesting effect on people with porphyria. Also people with porphyria do not make ATP quickly or well so your liver is slow to recover its store. But I’m going to guess here that’s it’s the detox issues AND the pesticide residue that is causing some of the issues. But again nothing is the same for all of us – so make sure to go slow on this and figure it out safely for yourself because nothing is the same when it comes to porphyria – we all have different genes and react uniquely to everything and anything. Blessings

  6. Reina says:

    Hi Greg,
    Somehow I couldn’t post any comment anymore. I just wanted to say a big THANK YOU!

  7. ryan carty says:

    Does anyone know why so many herbs and spices exacerbate porphyria??? I’m battling whipple’s disease that I believe is causing my porphyria attacks I have no doctor helping me or believing me in all of this so I had to resort to herbs for the infection I had to stop the bactrim ds which wasn’t helping me anyway. It’s like I try to do something good for one thing but then it brings on even more problems afterwards. I just can’t seem to win no matter what I do. I just bought a thing of earl grey tea I hope the bergamot doesn’t give me issues like someone else on here mentioned. This is the worst most difficult thing I’ve ever endured in my life. I wonder if many other people have infections or diseases that’s bringing the porphyria on too possibly because it’s causing liver damage. I should have never stopped taking milk thistle. Man I’m at such a loss right now and so confused I have an ID appt. Next Monday I’m sure they won’t believe anything I tell them. Say some prayers for me if you could porphyria family my family and I need it more than ever right now. I need a miracle from God right now.

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