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HELP PLEASE! I don't understand this diet.

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  • HELP PLEASE! I don't understand this diet.

    Hi everyone,

    I am very recently diagnosed. I've had one day to look over these pamphlets the urologist gave me and all of them stress diet. It seems that nearly everything is off limits...I am not complaining, just curious and confused. Where do I begin?

    I also have celiac disease...so no gluten. It's all so very complicated.

    Any help from the "oldies" to IC regarding this is VERY appreciated!

    Take Care and blessings. -J
    Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

    I have too many chronic illnesses to mention: so I won't.

    "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

    "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)

  • #2
    Hi J-
    The easiest way I found to manage the diet, especially in the beginning, was to print out this version of it.
    http://www.ic-network.com/handbook/diet.html
    I started out by eating only foods in the "usually ok" column, then added foods in one by one from the middle column, waiting a few days between each to know if it caused my symptoms to increase or not.

    Be very careful about label reading & avoid foods that contain:
    Citric Acid, Sorbic Acid, Metabisulfite, Nitrites, Nitrates, Phosphates, MSG, BHA, BHT or added vitamins & minerals. Those ingredients make even foods listed as "safe" irritating to us.

    It's a tough process, but well worth it! My symptoms can be managed with treatment only if I follow the diet. If I "cheat", the meds aren't able to work.

    Hope you are on the road to recovery soon!
    & Welcome to the ICN!
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      I know how you feel! I've been doing it for over a mont (but the last 2 weeks religiously). I still don't feel better following the diet, but I did ID a few bad things (chocolate, multi-vitamins, tea, and a few other things).

      I would say Kadi has some great advice (she gave me lots of advice on my posts!). I am beginning to wonder if I have an intolerance to something I eat, even if it is "usually ok".

      I'm sorry your have Celiac Disease. That is very hard to follow in of itself. I would stick to meats, dairy, vegetables and some of the ok grains. What is similar to both CD and IC is that preservatives and additatives can be dangerous (ex: malt extract for CD and ascorbic acid for IC)>

      Someone posted about how to start the diet and they went through their pantry and put IC safe foods in one cupboard. Maybe start with your CD foods, then pull out the non-IC friendly ones. I feel like my bladder is freaking out with everything I take in, so I may not be intolerant to all foods... but right now I am! I have been told to start bland and add things back when the bladder calms down a bit. Try something, wait a couple of days before assessing if it is safe for you. Try Prelief (if you can with CD)...

      I'm just trying to give you the advice that was given to me! I'm still struggling with the diet too!
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

      [

      Comment


      • #4
        Wow, celiac is complicated enough. If I could have enough pain meds I would take the IC over the celiac any day. I have family members that have both celiac and diabetes but no one with celiac and IC . It is crucial that you work within the boundaries of the celiac, you are probably used to most of your food being organic and costing a fortune already, (preservatives will kill you). If your IC is not that severe you may need to do the really bland diet only when you are flaring. I find that when I am in a flare there is almost nothing that I can eat and when I am not flaring I can drink alcohol and orange juice without problems. Of course most of my flares these days are right when I am PMSing and want to eat every usually problematic item in sight. The list in the handbook is very helpful, but it is somewhat different from the one my doctor gave me, so that just adds more confusion on some items. Every one of us really is different and you just have to start off bland and add things as you go.
        I wish you the best of luck
        I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

        DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


        I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

        Comment


        • #5
          A couple of suggestions just to get you on the right track:

          Breakfast:
          Omelet with Colby Jack Cheese or American Cheese.... with honey dew

          Lunch:
          Baked Potatoe with butter.... with steamed veggies such as brocolli, carrots etc.

          Dinner:
          Rice, meat, a salad WITHOUT tomatoes or traditional dressing (if you do a search on the ICN you will find other salad dressing substitutes)
          current meds:
          cytotec 200mcg twice daily
          toprol
          allegra

          ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

          dx: hashimoto's thyroiditis 1998
          dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
          dx: endometriosis 2003
          dx: innapropriate sinus tacchicardia 2005

          meds tried but failed:
          elavil (6months)- severe tachycardia
          elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
          a bunch of others



          Me and my best friend's baby (also my Godson!)

          Comment


          • #6
            Good job, Sacausa!

            PrivatePain -- Ginny also has celiac. I will call this thread to her attention in case she has any suggestions. I'm sorry I have nothing to offer, myself, but my sympathy.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn
            ___________________________________________________

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


            On the Beach with IC

            Comment


            • #7
              Many of the larger super markets now have special food sections where you can get things like bread, cookies, etc., that are gluten free. Some are very good. One of my children was allergic to wheat when he was little and I found lots of wheat free things for him.

              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


              • #8
                Welcome Privatepain,

                It does take time to get the diet down so please don't get discouraged. It took me a good six months to a year to figure out what caused me to flare, and what was okay. It was suggested to me to start a voiding journal: you write down what and how much you eat or drink, and how it effected you, how many times you went to the bathroom etc... In the meantime like everyone else has mentioned use the IC diet guideline in the handbook, and hopefully you can adapt it to your Celiac's disease. Good luck, and let us know how you are doing.

                Comment


                • #9
                  Thank you!

                  Thank you so much everyone I appreciate your input and suggestions a lot. I'm just going to start a journal again, like suggested. This helped me a lot with my Celiac and pinpointing my food intolerances. Happy Mothers day to all!

                  Blessings. -J
                  Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

                  I have too many chronic illnesses to mention: so I won't.

                  "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

                  "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)

                  Comment


                  • #10
                    You are welcome!!!! Happy Mother's Day to you too!!!

                    Comment


                    • #11
                      It Will Get Better!!!!!!!!

                      I have had IC for almost 3 years now. The first 6 months I was so scared of food that I lost about 30 lbs. I was very upset, and kinda nonbeliving that I actually had IC. I would mess up the diet all the time, and I finally realized I was just hurting myself more. I finally learned to think of the diet as something that can help me. I learned to look at it as a diabetic person looks at their diet. You can choose not to do it, but the only person you end up hurting is yourself.
                      First step:
                      Learn what you can and can't eat!. Take your list with you shopping if you have to. Also educate your family and friends about it. Give them copies of the list for when you go to their house for dinner.
                      Start with trying not to break the rules at all. When you feel good and aren't having any pain, that is the time to try 1 new food in at a time. If it hurts you, than you know exactly what your pain is from. DO NOT MIX FOODS, WHEN TRYING SOMETHING NEW. Also, remember to give yourself time in between trying new foods. Sometimes the pain doesn't come for a day or so, and if you try something else you don't know which one is causing the pain. Don't try new foods on your period!!!! For me there is no difference in the cramps and if my bladder hurts. It's just all pain.
                      Second:
                      Keep it simple. You can eat most veggies, and unprocessed meats. So when you go out, get the simple plain foods. Even when you cook for yourself. I think if it's simple and boring I probably can eat it. IE: white or brown rice. Baked or boiled potatoes, or even plain mashed, and plain meats (seasoned like mad, with garlic).
                      Third:
                      Learn your weaknesses! My personal weakness is parties. If I go to a party hungery, you can bet I'm going to want just a bite of exactly what I can't have. I end up eating more than one bite, and generally overdoing it. Then I will be in pain for days. I now eat before I go to parties, and most of my family and friends try really hard not to tempt me with things I wish I could have. That is the best way for me to stay on track.
                      Fourth:
                      Find your replacement favorites! Mine is soft serve vanilla ice cream!!!!! I also really like white chocolate (it took me a while, but I have grown a taste for it). Pears, and avacadoes are a must. I buy both of those on a weekly basis. I have grown a taste for honey, on toast. And last but not least Garlic! I now replace everything in my cooking that used to be onion with garlic. Yummy!!!

                      YOU CAN DO IT!!!! It is hard, and frustrating at first. Just remember you can do it, and it will get easier over time. Some of my favorites listed below!!!!

                      The Chicken veggie wrap:
                      Chicken strips stir fried with green peppers, mushrooms, olives, garlic, and any other kind of veggie you want to throw in. Then wrap in tortilla shell with mozerella cheese. The leftover veggies are really good in an egg omellet the next morning.

                      Honey nut cheerios: self explanitory

                      I hope you get feeling better soon, and keep your chin up!!!!!
                      Redmowii

                      Comment


                      • #12
                        Redmowii gave you some excellent suggestions! Especially the one about not testing new foods on your period, I didn't think of that, but it makes a LOT of sense. I do the chicken veggie wrap too a lot! Sometimes I make it with thin strips of steak, also good.
                        Just be sure to get tortillas without preservatives (no citric or sorbic acid, no metabisulfite). I get mine at Trader Joe's You might also substitute Oatios for the Cheerios. The Cheerios are a flare-in-a-box for me b/c of the added vitamins & minerals or BHA/BHT in the packaging.
                        Hang in there-
                        Kadi

                        -------------------------------------------------------------
                        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.
                        ------------------------------------------------------


                        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                        Source - Pinterest
                        "


                        Current treatments:
                        -IC diet
                        -Elavil 50mg at night
                        -Continuous use birth control pills (4-5 periods/year)
                        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                        -Pyridium if needed,
                        -Pain medicine at bedtime daily, as needed during the day several times per week
                        -Antibiotic when doing an instillation to prevent UTI
                        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                        -Dye Free Benadryl 50 mg at bedtime
                        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                        -Managing stress= VERY important!
                        -Fur therapy: Hugging the cat!

                        Comment


                        • #13
                          No Honey Nut Cheerios for me neither. All cereals that are not organic are out for me because of the BHT BHA. I would flare for a couple of days for sure. I'm just getting over a food associated flare so I really like to stick to my diet. I don't like the pain!!!!

                          Comment


                          • #14
                            thanks again!

                            I just wanted to thank everyone for all of the advice! You all have been so helpful.

                            I wish everyone the best with this diet...I'm starting my notebook on food reactions today.

                            Blessings. -J
                            Most days I'm the eternal optimist , but on the days I'm not, for your personal safety and sanity's sake, stay away.

                            I have too many chronic illnesses to mention: so I won't.

                            "I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks

                            "I will never give up on my dreams; I will simply modify my path for reaching them." -J (me)

                            Comment

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