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how many here swear by IC diet

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  • how many here swear by IC diet

    Honestly, do people here think the IC diet really helps our symptoms? I mean obviously if we drink coffee everyday or have alcohol with cranberry everyday and chocoalte ice cream every night then we kinda deserve to suffer a bit. But does one coffee a day make a difference? does 1 pasta a week make a difference? Im asking because I am trying the diet (about 90%) of the time and havent noticed a change. Thoughts?

  • #2
    If you change that 90% to 100% you may notice a change. I have found a low acid coffee that will allow me one cup a day. We got a new espresso maker for Christmas and I tried just one cup of a diffent kind of coffee and had a two-day flare.

    Yes, I definitely swear by the IC diet!

    Stay safe

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    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.

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


    • #3
      Yes you need to do it 100% to begin with, after a while and your bladder has a chance to stettle down you maybe able to add back in some food items.

      My expirence is I was in pain and had symptoms all the time so when I cut a few items it didn't make a different. It wasn't till I cut out all offending items and keep them out for a few months, when I added them back in I knew if they bothered me back caused me instand pain.

      Sorry but there is not half way with this diet.

      My are with you all. May you all find a way to peace and joy in your lives.


      • #4
        I stick 100% to the diet, and have since diagnosis. The only times I have strayed from it were unintentional... sure did notice something in the store-bought rolls from Thanksgiving set me off! I usually pee every 3-4 hours, and I had to go every 10 minutes for a few hours that day! The dye in a single peppermint causes the feeling of "pressure" on my bladder to start. If I was only sticking to the diet 90% of the time, I probably wouldn't have picked up on these things at all.
        Symtoms started July 2010.
        Severe pelvic floor pain only.

        2 time PT graduate!
        In medical remission since August 2011; able to eat and drink anything I want currently.

        IC meds:
        200 mg Elmiron in the morning
        100 mg Elmiron @ night
        Macrobid after intercourse

        03/11 07/11 01/12
        If at first you don't succeed: 07/26/2013!


        • #5
          Does diet matter..

          I have the experience that diet ABSOLUTELY does matter. I have had good days and try one of the no-no things and go immediately into a semi-flare. Was feeling great yesterday and, maybe I'm really in remission. Then had a sandwich on Rye (a no on rye on the diet) and a flare.


          • #6
            I only recently got serious about my diet, I think in part because I didn't want to give up certain things and in part because I find it kind of overwhelming. I look at the list over and over and seem to have a hard time retaining it Its like I have a mental block or something.
            Anyways, now everyday I try something that I really like but not sure about or something in the "try it" category. Luckily if something is no good for me I can tell within an hour or two as it gives me an unnatural feeling of having to go, kind of a painful feeling of having to go vs just slowly feeling like I have to go. I am slowly building up my list of safe and stay away items. I can have low acid coffee once a day and I even take a couple of prelief with it just to be safe.

            I think whether or not you can cheat during the week probably depends on how you react to foods and drinks. When I react, it only lasts a few hours and then its gone and I'm ok again. This is probably because my IC is mild. Therefore I am one of those people who can drink wine when I'm out for dinner occasionally or eat problem foods with lots of prelief knowing my pain will only last hours.
            If you are in pain for days after consuming a food or beverage as lots of people on this site are, then it would not be worth it. So I guess I'm saying you have to weigh the pain potential against eating the acceptable food. I think its individual.

            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link:
            AUA 2011 Guidelines to diagnosing and treating IC overview-
            AUA 2011 Guidelines to diagnosing and treating IC PDF:
            Great treatment flowchart on page 19 of the pdf


            • #7
              It did with me I had a cup of coffee, next morning had a cup of coffee, next day flaring.
              <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


              • #8
                does diet help

                For me, the diet has been a life saver. I can't tolerate most meds. so I used and still use, the diet, and am generally very careful about not cheating.
                This past week, I ate little bits of this and that which I know I can't eat, and I am paying for it now! Ouch!
                I don't drink coffee, so I can't speak to that.


                • #9
                  The Diet

                  My pain is not gone by any means. But since I got really serious about the diet it is different. And I can truly tell when I've eaten something that hurts me, whereas before the diet, I just hurt like that all the time. The first time I REALLY noticed it was right after I had been diagnosed and found ICN and the diet (which at the time I considered a "suggestion"). I was half heartedly trying the diet and my family decided to have fast food burgers for lunch. I always have extra pickles on my burger and that's what I got. I immediately shot from a pain level of 6 to 10. And I know for a fact it was the pickles because I'm hard headed and tried it again on another day. The diet works for me. It's not a cure, it is for some people. But it helps and I'll take any help I can get right now.
                  Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                  Lexapro-20 mg
                  Ambien-as needed
                  Percocet-7.5 up to 3 per day as needed
                  Valium-10 mg x2 per day
                  Phenergan-1 at night
                  Prelief w/everything
                  Now recovering from acute pancreatitis

                  Currents treatments that help somewhat:
                  Heating pad
                  Hot baths
                  Being VERY still while lying down with legs elevated


                  • #10
                    Dealing with Diet Overwhelm

                    Cindi actually hit on a very important thing. Many of us got overwhelmed by the diet at first. It may help to make a two or three week meal plan based on the Bladder Friendly food. Then you can recycle those menus like hospitals and schools do!

                    The other thing I suggest to patients is dedicate one night a week to a "new recipe." This can truly be trying a new bladder friendly recipe, or it can be a night where you modify an existing recipe that is a favorite of your family, taking out problem ingredients and substituting IC friendly ingredients.

                    That way, you can make your experiments more exciting and you feel more in control of your diet!
                    Julie Beyer, MA, RDN
                    IC Dietitian, Patient Advocate, Speaker, & Author

                    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                    ........ ........

                    Other IC Diet Resources:

                    IC Diet Webinar
                    IC Diet Website
                    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                    Free IC Diet Booklet: What Can I Eat?
                    Confident Choices IC Diet Blog
                    IC Diet Newsletter

                    *Let's Connect!*


                    • #11
                      I definitely swear by the IC Diet. That one change had the greatest effect in reducing the pain I'd been in.
                      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


                      • #12
                        The only time I noticed a diet induced flare was after eating Indian food. I had the chicken vindaloo, a serious mistake.

                        I almost forgot a box of chocolate nearly killed me, but I did eat the entire box. I would have been okay with a few
                        Last edited by vanilla; 01-26-2011, 07:57 PM. Reason: forgot something


                        • #13
                          I don't know why, but the diet helps me have less pain. I have to cut out a whole lot more than most people. It cuts down on the pain, but doesn't get rid of it all.

                          I had a uro tell me that he didn't think diet really mattered and it certainly was not going to hurt your bladder. Yeah, right. I also had a different uro tell me to relax and go home and have a glass of wine. Both of these doctors are well known IC specialists. I find what they say in the magazines isn't always what they say in person.

                          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN that we may become more SPIRITUAL.


                          • #14
                            The diet for me was one of my biggest tools in managing my symptoms - and I had to be very strict for the longest time. Eventually I was able to "cheat" and even then I used Prelief. But, I found that for me, the more strict I was the better off I was as well. It seemed that all my "good behavior" compounded itself - the longer I was faithful to the diet, the better I felt and when I did have a cheat now and then (coffee or a bit of marinara) I wasn't too badly affected
                            How do you eat an elephant? One bite at a time...

                            Harry arrived 2/23/09!

                            *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                            IC Diet Cheat Sheet:

                            IC dx'd Nov 2004
                            Lymphocytic Colitis dx'd July 2005
                            Possible IBS
                            Current IC Meds
                            Vistaril 25mg in the evening
                            Previous IC Meds taken:
                            Cystoprotek - 2 caps 2x's a day
                            Elmiron, 100mg 3x's a day
                            Ditropan, 5 mg 3x's a day
                            Wellbutrin 150mg 2x's a day for Anxiety/IBS
                            Pepcid 40mg a day for GERD
                            Zytrec for Nasal Allergies
                            Align Probiotic daily for IBS


                            • #15
                              I agree with the last poster. I was really down about the diet because how much I love to cook and eat, and how much I love to experiment with food. When I was first diagnosed, I stuck to the diet faithfully and it really did help. Once my bladder calmed down I have found that I can tolerate many things from the try it list and on occasion a caution item. It's weird because things like sushi, a problem for many, does not seem to bother me if I take prelief, but bananas cause me to flare. The only way to find out is to add foods back slowly and cautiously after sticking to the diet for at least a few months. Many of us have to stick to the diet faithfully, but then again many of us have found after treatment, we can eat things that are possible triggers in a small amount. The best of luck to you! Also, don't beat yourself up too bad from straying, no one is perfect.