I also have IC and now have hope that my ND can help me. I could not tolerate gelatin in the broth. Can you tolerate raw garlic pressed or minced? I am looking into all of this for my husband. I think it s better to drink rooibos-tea, maybe green or whitetea and yerba mate, instead of coffee. Such a bummer but so much better to be symptom free. Do you think giving up fruit can get her out of this flare? Then one day he, ignoring it, went to Wendys and got a frosty. pollock is inexpensive, salmon notPaleo has helped me almost completely in curing acid reflux /gerd too. You could also contact Dr. Zeff to find your food intolerance which makes reintroductions easier. Our son cannot digest any fruits and most dairy either. Yes, happily. Read the book below! I, too, benefited from NAET at one point; its such a journey and a process. But it will not help IC. I have done a few allergy test through the lab with blood work and paid for myself. Ive been doing so much better but have to take copious amounts of supplements/probiotics daily and still have about 10-20% of healing left before I am at 100%. I do not feel bloated anymore and Im actually able to work out again. Did you take 1 capsule daily or increased the dosage? I truly think that if my Doctor had diagnosed me with this sooner, perhaps she would not have suggested the bladder sling and my life may be better without this horrible pain. I hope this helps you in the future all the best. So I am wondering you say you are healed as in your gut healed your bladder healed. I read your post probably a year ago. I get my food sensitivity test back tomorrow so I am so thankful that my IC is curable! We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to, Truly one of the best and easiest dinners, 90-Second Keto White Bread makes one small, Tom Kha Gai is that Thai soup everyone loves and a, I mean it when I say this the best AIP Stuffing re. More than once I asked the pharmacist, politely, but completely incredulous, Why do they cost this much?. I ate coconut oil for a few days and seemed to be fine. I am struggling at the moment with diet and nutrition. THANK YOU so much for getting the word out there that IC IS NOT INCURABLE! Each flare I agonize over if and when it will go. A food intolerance is different than a food allergy. And interestingly, we all have primary and secondary foods that we do not digest well. For me the journey at first was debilitating. I am wondering how you were able to pinpoint things like cotton and plastic causing pain, and what you used/wore once you discovered that. The nutrients in foods help strengthen your immune system, heal wounds, stimulate nerve transmission, keep your blood flowing normally, and promote overall health. . Hi Megan, I had read on naturopathic doctor (SIBO specialist) Alison Siebekers website siboinfo.com that homemade yogurt that is 24-hour cultured is usually fine for those with SIBO because all the lactose has been eaten up. Sometimes heat/cold therapy are the most effective treatment to relieve the pain of a interstitial cystitis flare. Thanks. What food evaluation do you recommend? I am going to start on GAPS for my IC AFTER I lower my histamine bucket as my histamine levels are too high to do GAPS at this point. Well, weve come to the point in the post where I need to tie together the pieces for you, tell you where Ive been and how I got to where I am~ symptom-free and so thankful I could fly! And you will find new favorite foods! I can have a teeny bit (like apple cider vinegar in a baked good), but I rarely do. I havent looked into food intolerances yet with Dr Zeff. Many blessings to you!! Limited diets arent necessarily bad, depending on what the limitations are. Try these two things. I have been going through IC for 6 years. Thank you. Were you able to eat fruit before you developed IC, or did you always have problems with eating fruit? But if his health wasnt good, if he lived in a place with little sun and he did have the evaluation, I dont think that dairy would be his intolerance. I also read a while ago that coconut oil has antigungal properties. If any one person in your family isnt thriving, then thats an indicator to keep looking for missing pieces. I also take a probiotic tablet, 500mg of magnesium capsule, B12(1200mg). YOU Are the reason I kept going and never gave up the hope that I could heal to. But if I have a day where I have a twinge, my go to is a heaty on the bladder, and a little baking soda in a slightly warm glass of water. For now, Ill share how I healed my interstitial cystitis, so I could be well again! So, your son first and then as many at a time as you can afford until you know all of their intolerances. I meant that because it seemed weird to me that coconut oil and olive oil also affected your condition, it could point more to salicylate sensitivity than to fruit intolerance. I have tried, and it causes immediate symptoms. I thought I was going crazy but your article shed so much light and helped me SO much. Have you looked into that? I started suffering from IC after many courses of antibiotics and after many years of being a vegetarian and vegan I finally healed on the GAPS diet also. You are so sweet to take such time to answer and be so thorough! I havent been diagnosed with IC yet , but my symptoms seem very similar , i do not have any infections , i have done urine , blood and stool tests and an ultrasound i have had symptoms of abdomen and bladder pain and frequency/struggle to urinate for a year , what should be the next step . But I suspect your son belongs to the first example, as does my son. I am seeing a naturopath at moment but def willing to look into more with Dr. Zeff. Big clue! For example, can you not tolerate any alcohol-based tinctures? If you have Mast Cell, tho, I hope you are getting GI Map stool test to look for parasites and gut infections those are big root causes of mast cell/histamine issues. A balanced diet with a wide variety of items from all food groups is the best diet for interstitial cystitis/bladder pain syndrome (IC/BPS). Super duper bummer. BUT it was the extremely gentle foods of the Intro. Also, we have been gluten free now for years. Thats where I found healing, and thats where I hear the most testimonies of healing from IC. Use pumpkin and sweet potato to make treats. I peed in my pants! Was it the supplements or the powder, I use Perfect Supplements bulk collagen powder: http://bit.ly/2rMvwHf. LOL, Im happy with that nickname, Linda! I personally do not have a salicylate sensitivity (thankfully); is that what you mean? Hi Tim, thanks for your thoughts and insights! Thanks for sharing your thoughts and input! Complex carbs are important, so modifying GAPS is part of the end goal, too. For some it will be giving up dairy, eggs etc., depending on their evaluations results, that will help, in my opinion. Furthermore, trigger foods and drinks can vary quite a bit for each case. Hi Megan I am working with a ND for my Ic and he uses the MRT Leap food sensitivity test for food sensitivities. Hi Alex, Im so glad you found the article and that your issues are so similar to mine, so this can be very helpful to you hopefully. Cut more out of my diet? Im currently on urogesic blue pills and pain killers but none of that helped the spasms I felt on Friday. Bladder spasms cause pain, inflammation, and itching. She prescribed an expensive medicine. I went to school and got my degree in coaching psychology after. But I wasnt sure if it would reduced urinary frequency? When I think of those tragic surgeries being done, and even her remorse and vulnerability with me, I am reminded once again what an important role naturopathic and functional medical doctors have in our world today. Interstitial cystitis can leave a person feeling not only uncomfortable, but isolated, because they are often afraid to be too far from home. I also use topical magnesium spray twice daily: http://amzn.to/1RIE1ZL I make sure to get K2 and calcium, as well as liquid minerals. It is also the best diet for everyone. Fruit also. Im so happy for your recent insights and that the article and website are helpful! I was wondering when you started eating bone broth In that first week did your spasms (if you got then) get way worse ? Every recipe is refined-sugar-free. Or just .. Ive dealt with IC for a decade and was told I had leaky gut around 30+ years ago. So my flare Ive had a friend thats texted me almost every day asking me how Im doing. Current IC medications: If you have time, Id really love to hear your thoughts. Common interstitial cystitis signs and symptoms include pain in the pelvis, chronic or recurring pelvic pain, a persistent or urgent need to urinate, frequent urination in small volumes, pain or discomfort in the bladder as it fills, excessive relief after urinating and pain during sexual intercourse. If your FI isnt fruit, it would be helpful (by a lot) to know what it is. I need to be strong for me, my family, my clients and my staff. How are you? Actual Study Start Date : Sep 15, 2021. My problem is that I also have systemic candida. Thank you for reading. 65% is a conservative number, likely higher. Im not opposed to physical therapy for IC, but I dont have any personal experience with it. We are finally doing better over the past 2.5 years, but after soooooo many years with so many limitations, it is hard to know how to ensure adequate nutrition for all persons in the family. Do you have suggestions? I also watch to keep my weight down and do daily Keigel workouts and some. I was diagnosed with IC 4 years a go and almost had to go on disability due to ther constant pain. . Its a good start! Dear Megan, thank for sharing your story with us! Im glad you talked to Dr. Zeff and have that information! If you tolerate sweet potatoes well, theyre caloric and nutritious, a very good choice topped with fat (butter/coconut oil). I do dietary consulting, if that would help: http://eatbeautiful.net/consulting/ I do not believe that eating fruit in the first place is was caused the IC, though, btw. SO much love and good health to you! The condition is a part of a spectrum of diseases known as painful bladder syndrome. Official Title: Efficacy of Peppermint Oil in a Randomized, Single-Blind, Placebo Controlled Trial in Women With Interstitial Cystitis/Bladder Pain Syndrome. Lets take a further look at each one: In my mind the goal is to create a healing diet that you enjoy so the push is not to get off. Wonderful. Thank you! If youre interested, heres his website and phone number at the Salmon Creek Clinic: 360-823-8121 *Update*~ You do need to have a brief 15-minute phone appointment with Dr. Zeff to get the food evaluation through the mail. I tried to eat a little fruit and vitamins this last week in order to boost my immune system and of course all of the IC symptoms have returned. for many, many years along with many other good supps.! Thank you for this article! 50% of all IC patients have fruit as their food intolerance. Hi Anne, well let me first say that this is been about the worst month and a half Ive had in a long time. Coconut oil may be placed directly onto the skin for therapeutic purposes. However I can t eat milk/dairy, so I won t be able to cook with butter. Weve been on it, as you know, for over four years with zero cheating. summary. Best to get the evaluation done soon and do your best until then. The GAPS diet contributed to me getting IC. 1 Do you have any insight on how to know when to move on to the next stage in the GAPS intro? I am so worried eating it will make me sick as I havent had meat or animal products (besides cheese, milk, yogurt , eggs,etc) in 8 years. I have IC and I am vegetarian. I need to find me again. Coconut oil is great for cooking and can be consumed raw as well. This is because each person experiences interstitial cystitis differently. To my frustration, my symptoms perfectly mimic it but according to him, my bladder is normal.) This is great Alexandra! Yep, that felt worse emotionally than it did physically. I been trying elimination diet, and really watching what I eat. GAPS is probably the best diet. There are other contributing factors that are more causal. Now I went on the Weight Watchers eating program for weight loss. After years on the GAPS Diet and various supplements, it was the one supplement that I could tell was helping to finally seal me up. Hi Lara, you can start a healing diet, either GAPS or AIP. Thank you! What are your thoughts? Never did a thing for me. Hi Ciara, I do recommend the GAPS diet as an overall healing protocol for leaky gut, and then also getting the food intolerance evaluation in the mail from Dr. Zeff so you can know which foods youre intolerant to, that need to be avoided completely. The cost fluctuated at my pharmacy. I believe (as do many authorities on the subject) that many men are misdiagnosed with prostate problems when its really IC. There are also a handful of other options that may be beneficial as well. Milk causes me acidreflux etc, so it s not good idea to mix milk with coffee in order to make it less acidic. I think coffee is generally irritating to bladder even if one doesn t have IC. I always mention, though, that with me, Id already been on main GAPS for years before I went back and did Intro again and got full resolution from my IC symptoms. Any fruit at all, including cloves, *olive oil, curry, most vinegar, certainly apples and pears, is still fruit. Karen, it took me longer than most. Because our health begins in our guts, our guts ability to break down foods affects every aspect of our wellness. Megan your story is ditto same to same with me, all the triggers are same for me adding garlic also, garlic helps in uti but triggers the most in IC, cant eat pomegranates too, summing up same, sugar triggers me too, high gi foods, fats helped me, almonds-walnuts, so whatever helped you, please tell me exactly the same from all supplements you are taking to all foods you are eating that benefitted you the most, whatever hepled you will benefit me for sure, you are my female version as i am male. Its used for anything from dry skin to psoriasis to dermal infections. Long story short, I am now seeing a FM and we are getting to the bottom of this. Look for cold-pressed and extra-virgin. It is a nightmare. And even more important to know that if symptoms return, they will go away again. And do they eventually go on GAPS or modified GAPS after histamine is reduced? Research shows that people with IC have elevated histamine level olives, extra-virgin olive oil, ghee, coconut oil, leafy herbs, and herbal tea. I apologize up front if you mentioned it in your article and Ive missed it. The Interstitial Cystitis Association Support Community connects patients, families, friends and caregivers for support and inspiration. I dont personally drink wine, because its fruit-based, and I dont ever eat fruit because its my food intolerance. However, it should be noted that this isnt the case for everyone. I was diagnosed with IC last year and preserved an antidepressant, however I was reluctant to take medication. Put one teaspoon in water and stir, then drink. Call. Bergamot oil may give you relief from the pain in your lower abdomen. Also, how could we eat like this. To clarify, the food intolerance evaluation is not a test and most doctors have not been trained to do it. I was just in the hospital 2 days ago with severe pain. The post just published. Now I need to skip milk and dairy completely. Ive just been helped amazingly by him, as has my daughter; and Im excited to hopefully share that dramatic potential with you. GAPS purpose is to heal the gut, which indeed helps to heal SIBO, at the very minimum supporting the healing process. Weband light: extra-virgin olive oil, pumpkin seed oil, flaxseed oil and walnut oil. It took me 6 months on the intro diet! So the combination of diet, lifestyle and supplements is important, but most importantly diet. So glad you are encouraged and experiencing wellness. It is the acidity of a healthy stomach that triggers the sphincter valves to shut (both the esophageal valve [to prevent acid reflux] and the ileocecal valve [to heal or prevent SIBO]). I symptoms for IC is throbbing,burning and pressure, not so much bathroom trips. So worth it. But sugar intolerance folks just need to stay away from cane sugar, beet sugar, standard American diet white sugar, brown sugar etc. Sending prayers to you for healing! It is just too much for here. This would be something to ask your ND or functional doctor about. I assume that is being applied as well. My stomach is swollen and Ive developed too much wind!! Diet that took me all the way home. I also think that vagus nerve, nervous system, has something to do with reflux and IC? I just finished the elimination diet and now I figuring out my triggers BUT never though fruit could be a trigger. (Doctors who do the evaluation are actually trained by Dr. Zeff himself or one other colleague who teaches the method.). I wanted to hear your input about the GAPS dietabout how long did it take for the introductory stage to heal you? So, either way, both pieces are likely needed: heal the gut through a healing diet AND find out ones food intolerance, so that food isnt standing in the way of complete wellness. That is a huge component to what makes this so debilitating. Thank you so much for this article! Conditions Interstitial Cystitis Intervention / Treatment Drug: Peppermint oil Drug: Coconut Oil Detailed Description After being informed about the study and potential risks, all participants will complete validated IC/BPS symptom questionnaires for I am now taking one of the Young Livings product call Alkalime to maintain the PH balance of my stomach and feeling much more better now, since the Alkalime is containing Lemon and Lime fruit powder. Thanks megan! One supplement worth looking into as well is N-Acetyl L- Cysteine. Anyway through the years with diet changes and other things I went into remissions. Likely pasture-raised meats are safe and most vegetables, especially ones like zucchini and carrots. He's on his way to world domination. You know what happened, right? Thank you so much for sharing your journey to total healing. I went through years of pain with many doctors giving me antibiotics that caused more pain. I had food allergy tests and it doesnt seem to come in to play for menot sure. Just popping in to say while coconut oil is safe physiologically, (like other oils) it is not safe for use with condoms, so if that's part of your birth control method then oil is a no go. It must be IC even though she hasnt told me yet. All of this happened after giving birth to our second child. I wouldnt get ahead of yourself. I wondered how Id do with say, coconut oil. This past winter has been particularly rough for me with getting colds and flus and I just dont know what to do. My favorite healthy tea is roasted dandelion root (this one). I had dropped my dose. It gave me some sort of idea of where to start as I was so lost before. Have soup with a grain-free or gluten-free muffin; and soup becomes fun and great! I believe that IC was my bodys aggravation or furtherance of leaky gut: leaky gut in my urethra and bladder. *Dr. Zeff was named Naturopathic Physician of the Year in 1989 for his contribution to the development of naturopathic clinical theory. New sickness could be caused. I also use naturally organic oil in my baking, plus I use it everyday for a lubricant in vagina, because I had a hysterectomy back in 1998, so I have vaginitis and my gycologist is helping with that. Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004 UTIs since mid 2004 Recurrent yeast infections since mid 2005 IC dx 3/2006 V V dx 12/2006 Other conditions: IBS, allergies, dry eyes. He does mail the food intolerance evaluation internationally. Now it is s bladder killer. The evaluation and brief consult costs $175. Boul. Such a helpful post with HOPE for those who experience this too. . He went off all dairy and now he is almost 23 and can totally handle dairy! They flare everything up, including my symptoms of urinary urgency. Because IC has such a wide range of symptoms and severity, most experts think it might be several diseases. When you introduce them go very slowly. You may also be able to handle a B-complex, like the one from Seeking Health (http://amzn.to/2oAKz33), or their D3 + K2. (its a root; you peel it and slice or cube or eat whole; it tastes like apple + mango; its sweet and juicy etc. So when I went back to this stage, for the second time, my IC symptoms, which were already pretty good, disappeared completely. This is a very wonderful post. I would take that step first. When you say finding your food intolerances. Hot peppers and spicy foods. At least it felt like that. There are also LOTS of recipes without fruit, dairy and eggs. For those of you who know what Leaky Gut is, do you know which percentage, of those who have Leaky Gut, are women? There is a lot of fermentable food in full GAPS and so quantities are going to be VERY important? He can send you the food intolerance kit in the mail. Soup is always good. Current IC medications: I have 8 children, so though youve given me much hope and direction with the GAPS diet, my husband is wondering if its good for all my children to do the diet- if it will provide the energy and sufficient nutrition for them. But I believe it REALLY helped to seal my gut, in addition to the other things I mention here in this post. I felt like my life was over, because all I read is there is no cure symptoms get worse with age.. Following your advice I contacted Dr Zeff and sent him a blood sample (even though I m based in London). To be sure, I tried the experiment off and on over the course of 2 months. I need the calories to maintain my supply. This eval reveals which foods your body does not digest well genetically. My son has one patch of eczema I havent been able to pinpoint for years, so well this week reduce oxalates and a bit more to see if theres a compound that needs to be isolated for fuller healing. Thank you for your posts!! She has me on some elixirs from the Herbalist in Seattle and 2 crazy probiotics. The condition is a part of a spectrum of diseases known as painful bladder syndrome. As mentioned, for the most part, coconut water is considered to be safe. I also read a while ago that coconut oil has antigungal properties. Thx a million!! So yes monolaurin (you can order off amazon), raw organic coconut oil (i spoonful this in me daily), i drink the water out of a coconut, eat the flesh of the coconut. rj. What are some of the safest foods for me to eat? A damaged gut lining can lead to a leaky gut. Herbal teas like ginger and mint are fine, too. Ive been trying to keep my spirits up but I just feel like Ill never feel normal again. And I want to thank you Megan and other persons here. Along with helping with yeast issues, its also helpful in treating uti's and cystitis. Blessings! I did not have a cystoscopy done. Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004 UTIs since mid 2004 Recurrent yeast infections since mid 2005 IC dx 3/2006 V V dx 12/2006 Other conditions: IBS, allergies, dry eyes. Thank you! No fruit for a long time but still symptomatic. As well as fiber. as I research and have studied for decades to find out the best to take especially at the age of 69. This means your gut doesnt have the machinery or enzymes to break down and eat a certain food. Diet I was not eating fruit. Thanks for your kind words!! Youre right that its needed. It is important that you dilute your chosen essential oil with a good quality carrier oil and many sufferers of interstitial cystitis recommend virgin coconut oil for this purpose. The purpose of this study is to assess the use of peppermint oil as a treatment for Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS). Coconut and olive are both fruits, and I dont react to any salicylates. When sugar is your intolerance, according to the Carroll Food Intolerance test, can yo eat coconut sugar? Bergamot oil may give you relief from the pain in your lower abdomen. They suffered from spinal damage, gut damage, major hormone imbalances, B-vitamin and iron shortages and more. One supplement to avoid is baking soda. They are minimalists when it comes to food and quantity. I was diagnosed with IC since last March, had a cystoscopy and urethra dilation which kind of worked as it removed a lot of the pain. You can eliminate all fruit from your diet, which 50% of IC patients are affected adversely by; this includes ingredients like cardamom, coriander and curry, as well as olives and olive oil. If anything, I feel better than ever . I am 68 years old, Pastors wife and I am in pretty good condition. The dosage and necessity of any supplement varies depending on the individual, of course. Actual Study Start Date : Sep 15, 2021. If thats the case, it'll be great. So we all went back to the beginning. Anticipated Primary Completion Date : Jun 1, 2023. As you may have read, perfectly healthy folks can pretty much ignore their food intolerances, because they're detoxing well and can manage the added stress during digestion. Both of the ones I link to are great options, with slightly different roles in the body, which is why I take both. Hi, I am also interested to see if collagen has helped IC sufferers? I am so lost and confused. Organic butter or ghee from grass-fed cows is okay are okay in moderation. But then I started jumping. Hi Mikaila, Im glad the posts are helpful! eval. Even after a flare goes away she has pelvic pain. I have a constant pain in the urethra and bladder, often obstipation and vulvodynia. 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Without fruit, dairy and eggs degree in coaching psychology after this you..., Placebo Controlled Trial in Women with interstitial Cystitis/Bladder pain syndrome treating uti 's and.. Weight loss, Linda looking for missing pieces has something to do with say, water..., of course fruits and most doctors have not been trained to do with reflux IC! Cystitis flare up front if you tolerate sweet potatoes well, theyre caloric and nutritious, a good. Don t miss coffee anymore, that felt worse emotionally than it did physically shortly reading. Am in pretty good condition blue pills and pain killers but none of that helped the I. Be something to do it patients have fruit as their food intolerance kit the! Psoriasis to dermal infections nickname, Linda this so debilitating and itching am thankful! Looked into food intolerances yet with Dr Zeff together: while on the Intro intolerances with... Lol, Im glad you talked to Dr. Zeff himself or one other colleague who teaches the method )... 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Hear the most part, coconut water is considered to be symptom free method... Safest foods for me to eat fruit before you developed IC, I!