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  • Some newbie questions

    Hi
    My name is Nicole, I'm 26 and I was just recently (2 weeks ago) diagnosed with IC, and lucky for me I found this site quickly. My Dr started me on Elmiron, stopped drinking coffee and coke zero (I have a feeling this was my major cause of my pain... used to drink 1-5 cans of coke a day!) and I'm trying to figure out the diet, and I find this is where I'm struggling... I think my biggest problem is that I'm focusing on things I CANT eat instead of things I CAN eat. But I noticed that Soy is on the caution list, when I did groceries alot of foods have soy last on the ingredient list or say 'may contain soy products', do you think those will cause problems? I just played on the safe side and didn't get them, but as the shopping trip continued I was just getting more and more upset about everything I couldn't have.... Just seemed like everything has soy in it.....
    I also noticed that people have suggested keeping a diet journal to watch what causes flare ups, but how long after you eat something before you have pain? (Like 6 hours, 24 hours) - I have the 'A Taste of the Good Life' on order so I hope to find some good recipes... I'm a huge spicy food fan, I put hot sauce on everything so I have some adjusting to do... I apparently have not been very nice to my bladder!
    Any or advice you guys may have would be greatly appreciated, its been a stressful week, lots of tears, but I think I'm at least taking some steps in the right direction....

    Thank you

  • #2
    Hi nikkers5,

    I am sorry you have had to go through this and join us ICers. I have had IC for the past 3.5 years and on the brightside the diet does get easier. I am one of those people who are very diet sensitive so my experience may not be the same as everyone. I usually get a flare from food anywhere between an hour to 12 hours later. The latter is usually the case, if I eat something before I go to be and wake up in a flare.

    The diet is also very individualized. I usually stick purely to those foods in the column that most people with IC can tolerate but there are some exceptions. I can have blueberries, a handful of blackberries, most cheese does not bother me unless I am already flaring and extra sensitive. I can drink decaf coffee in moderation as well as eat certain tai food dishes in moderation.

    In regards to soy products, I do not eat anything with soy listed in the ingredients. But again it really depends on the person. When I started out, I only ate very bland, basic food and slowly added things in. I found I could eat a handful of blackberries but even two rasberries or one strawberry sent me into a major flare.

    I also used to absolutely love spicy food and that was one of the harder to things to give up but once I had a three day long awful awful flare from a few small bites of Indian food, I realized the diet was worth it.

    Since then I have discovered a love for sweet potatoes, asparagus, butternut squash and mushrooms which I did not know I had. The best advice is just to experiment and try to embrace new foods on the good list , you have tried before.

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    • #3
      It sounds like you're moving in the right direction. There's an excellent recipe section on this site which will help.

      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

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      • #4
        Hi Nicole,
        The diet is hard at first but you have a good attitude to concentrate on what you CAN eat. Everyone is different but if I eat or drink something that botters me (like cocoa) I can tell within an hour or two. Drinks bother me more then any food (other then tomatoes). Years and years before I had IC I knew too many tomatoes made me pee alot and like you I drank about 5 or 6 diet cokes a day I have totally given up carbonated beverages of any kind as the carbonation is an irritant. Also be careful of flavored water as those can bother you too.
        Not everything on the list bothers everyone but its good to start with only the safe list and then after a couple weeks or when your symptoms are under control, try one new thing a day to see what bothers you. I can eat most cheese and blue/black berries too like plmokn but yogurt bothers me alot so its just trial and error figuring out what bothers you and what doesn't.
        It is overwhelming at first but in time you'll have it memorized and it will be easier then.

        Also, prelief is an over the counter supplement that you can take before each meal that will reduce the acid of any food. Its helpful to take care of any hidden acids and also if you know you're going to be eating something that might be more on the "try it" list.
        Last edited by cmclien; 02-26-2011, 02:49 AM.
        Cindi


        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: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

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        • #5
          every icer is different when it comes to certain foods and the lenghth of the reaction, my reaction was two days after cheating i had too cups of coffee. you are new so it is best to stay strickly on the ic friendly foods for now. it is a life altering diet among other things but, you are not alone and being on this forum will help you with so much info. plus we all understand one another and support each other. lots of hugs and prayers your way.
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          • #6
            Thank you all so much for your help- The diet is going ok so far- I'm just not eating alot of variety, but I think I'm through the Coke Zero and coffee withdrawl! One step at a time

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