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  • Caffeine?

    I was diagnosed with interstitial cystitis a little over a year ago. Since then I have tried to change my diet and that didn’t seem to help so luckily I think mine isn’t diet related. However, I am very nervous about drinking caffeine and really acidic things that could still irritate and everyone says not to. I don’t drink soda, coffee or regular teas. I recently started drinking hot chocolate though. If I can drink that and be fine, do you think I’m okay to try coffee? I take prelief incase...

  • #2
    If you're really doing well, you might want to try a low acid coffee --- I suggest starting with a tiny amount.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Mine isn’t diet related either and I drink light coffee everyday half cup in morning and half cup In afternoon and I’m fine. But I also use French vanilla creamer to dull it down. It has never increased my symptoms. I agree with Donna try a low amount and see how you do? I hope your do fine. There is nothing more refreshing than a good cup of coffee. =)

      Comment


      • #4
        I’ve had hot chocolate, a matcha latte and I drink alcohol all the time and I’m usually fine I don’t notice any particular flares based on those. I wonder if I can think diluted regular tea or coffee that is diluted with milk.

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        • #5
          I’ve drank the low acid + decaf cofeee and was fine. Continue to drink alcohol with no issues. Wonder if I can tried regular iced coffee soon? Maybe with more milk than coffee? What do y’all think

          Comment


          • #6
            I make a cold brewed coffee concentrate. I use low acid coffee beans to start with, grind very fine, then add cold water and let it set overnight, then strain it through a toddy maker. You can find instructions if you do a search for "toddy maker" --- you can also strain it through several regular coffee filters.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              ICNDonna Thanks for the advise! What kind of low acid beans do you use?

              Comment


              • #8
                Originally posted by ad1189 View Post
                ICNDonna Thanks for the advise! What kind of low acid beans do you use?
                It can vary --- I usually end up with Starbucks French Roast --- the dark roast has less caffeine ( when we visited the coffee mill in Hawaii, they told us about that).

                Donna
                Stay safe


                Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

                Comment


                • #9
                  ICNDonna Ah okay so you drink Starbucks decaf with no issues? I am nervous to try even though mine doesn’t seem food related but never know until you try, right?
                  thanks again!

                  Comment


                  • #10
                    So, first of all I wanted to mention that it took me not eating anything acidic for about 2 years to really finally feel like I was in control of my IC symptoms, but I still cannot have much of anything or it will set me off. Too much of something in a marinade may set me off for a week! Anyway, I came to tell you about Genius Caffeine capsules, they are time release so they aren't at all like Vivarin and all of those others that can make you really jittery and sick. I take these on occasion when I need a bit of help through the day, but I personally have to be careful and take them with food or I still get just a little bit jittery. I got mine from Amazon after a friend recommended them. They also have mint and gum and all sorts of things with caffeine that are not soda or coffee. I also like the Pero and Caffix coffee alternatives but they still ramp up my frequency quite a bit.

                    Comment


                    • #11
                      plaedes i think caffeine is generally not good for your bladder. Luckily I’ve had drinks with it in it and been fine but generally try to avoid.

                      Comment


                      • #12
                        Originally posted by ad1189 View Post
                        ICNDonna Ah okay so you drink Starbucks decaf with no issues? I am nervous to try even though mine doesn’t seem food related but never know until you try, right?
                        thanks again!
                        I need to qualify that statement --- I can have ONE SMALL CUP OF DILUTED LOW ACID COFFEE COLD BREWED IN MY TODDY MAKER. A real coffee drinker would probably not appreciate my coffee, but before I got the toddy maker, I hadn't had coffee for a long time and I thoroughly enjoyed it.l

                        Donna
                        Stay safe


                        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                        Have you checked the ICN Shop?
                        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                        Patient Help: http://www.ic-network.com/patientlinks.html

                        Sub-types https://www.ic-network.com/five-pote...markably-well/

                        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                        [3MG]

                        Anyone who says something is foolproof hasn't met a determined fool

                        Comment


                        • #13
                          I mix my coffee with with left field salted caramel creamer or coffee-mate natural bliss salted caramel creamer. Like, 1/4 if a cup of creamer to one typical-sized cup of breakfast blend. Seems to have worked out so far.

                          I also get a vanilla steamer from Starbucks sometimes. Has the indulgent feel of coffee.

                          They also make low-acid coffee, but I've never tried it. It might be worth a shot.

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