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How I Reversed My Interstitial Cystitis (with diet) is a personal post for me, not only because I had IC but because I know that this is an important article for many of you. I know that some of you have been waiting for me to write this so that you might learn something and get well! Of course, I’ll iterate here that I am not a health care practitioner; so I am simply sharing with you what worked for me. May you be so blessed as to find a naturopathic or functional medical doctor as insightful as the one I’ve found. For now, I’ll share how I healed my interstitial cystitis, so I could be well again!
What is Interstitial Cystitis
The medical community considers IC an incurable bladder disease. The description of this disease from Web MD goes thus:
Interstitial cystitis (IC), often called painful bladder syndrome, is a tricky condition. It’s tough to diagnose, and though treatments can make life with it better, there’s no cure. Because IC has such a wide range of symptoms and severity, most experts think it might be several diseases. If you have urinary pain that lasts for more than 6 weeks and is not caused by other conditions like infection or kidney stones, you may have IC. No matter what it’s called, interstitial cystitis symptoms bring a lot of challenges. The disease can affect your social life, exercise, sleep, and even your ability to work. Despite this, you can still arm yourself with facts and treatments to keep symptoms in check. (source)
Some who have lived with IC symptoms manage them with a genuinely benign medication, meaning it works well and without side effects. The catch is the cost. I literally had to fight back tears each month when I wrote a check to the pharmacist for the pills. I could never get over the criminal price. More than once I asked the pharmacist, politely, but completely incredulous, “Why do they cost this much?”
One interesting thing is that IC symptoms can improve during pregnancy and worsen at certain times in one’s cycle; so yes, the disease is tied in with hormone levels. It is also affected by stress and last but not least, IC is affected by what we eat and drink.
In addition to most of the allopathic community being corrupted by pharmaceutical companies, their other great weakness is a lack of knowledge or even interest in nutrition. In our own community we are beginning to see cancer specialists who advocate for bone broth. Little by little doctors certainly will prescribe certain diets as alleviating to symptoms. But what you rarely see is a traditional, Western, medical doctor talking or caring about the fact that we can heal our bodies, and prevent disease, by the diet we choose.
Another interesting fact about IC? (And this is building toward the solution.) 90% of those affected are women. For those of you who know what Leaky Gut is, do you know which percentage, of those who have Leaky Gut, are women? 65% is a conservative number, likely higher. So the incidences of leaky gut and IC coincide.
Medical schools do not yet teach about Leaky Gut; so the correlation is not being made. But if you ask a naturopathic physician, they will not pause before saying … that yes, IC is an extension of leaky gut, all the way down into the bladder and the urethra. I have asked multiple NDs now; and their answer is a very undramatic, “Of course.”
Leaky gut is caused, by the way, by food intolerances, poor nutrition (a vegetarian/vegan diet, excessive consumption of unsprouted grains or sugar, and factory-made foods), overuse of antibiotics, disruption of proper flora balance due to stress, adrenal fatigue, eating disorders, not being breastfed, and exposure to parasites. Poor dietary choices, overuse of antibiotics and not being breastfed are the three most common causes, especially when they occur in conjunction with one another.
Now, the solution is more elusive; and that’s why we’re here today!
Next up is something called the Food Intolerance Evaluation
My physician told me about a dietary evaluation developed by a naturopathic doctor, Dr. Otis G. Carroll, about 100 years ago. This is not a lab test. It is not like the food intolerance or allergy tests that most naturopaths use. Most naturopaths do not know about it. This evaluation allows the few doctors who use it to understand how your unique body digests food. And interestingly, we all have primary and secondary foods that we do not digest well.
(Those who enjoy optimum health or who live in sunny climates detoxify better; and so their issues with these certain foods may never become poignant or important in their health journey. But for those of us who live in less sunny climates and who struggle for wellness, this food digestion issue is huge.)
Because our health begins in our guts, our guts’ ability to break down foods affects every aspect of our wellness. That means that there may be one food group in your diet that is literally sabotaging your health. If this is true, are you willing to pull out one whole food group to enjoy wellness?
I was; and I continue to be willing. It’s hard; but it works.
My food group?… Here’s the stinger: fruit. All fruit. Even olives, olive oil, coconut, coconut oil, nutmeg, cloves, allspice… not to mention my favorites: figs, oranges, blackberries. The good news? There are a few foods that don’t fall into this category that you would expect to: watermelon, all melons, tomatoes, tomatillos, avocado (for some).
So here’s a bit more information about Food Intolerance Evaluations:
Having a food “intolerance” means your gut doesn’t know how to digest a certain food. This means your gut doesn’t have the machinery or “enzymes” to break down and eat a certain food. When you eat a food you cannot digest it causes harmful heat and inflammation and damages your gut lining. A damaged gut lining can lead to a leaky gut. A leaky gut lining can lead to food allergies. Food allergies mean your gut is reactive to certain foods. A food intolerance is different than a food allergy. Food allergies can resolve in time after the gut lining heals. A food intolerance suggests that you don’t have the right genes to make the right enzymes to break down a certain food. A food intolerance doesn’t change with time or healing. A food intolerance suggests that genetically you do not, and will not, make the machinery needed to digest a certain food. Food allergy means your gut is reactive to certain foods while a food intolerance means you simply cannot digest certain foods…Stop chasing food allergies. Find out the root of your digestive problems and learn what foods you simply cannot digest. (source)
My Interstitial Cystitis Story
Well, we’ve come to the point in the post where I need to tie together the pieces for you, tell you where I’ve been and how I got to where I am~ symptom-free and so thankful… I could fly!
My symptoms started, actually, in my urethra. Pain during sex, peeing, all the time, actually. Super duper bummer. Turns out that Eugene, OR (where I live) has one of the nation’s leading medical specialists on the condition. The diagnostic nurse tested me (not fun, catheter involved) and told me that I had the worst case of IC that she’d ever seen.
I met with the doctor. She prescribed an expensive medicine. She was very kind, and we also chatted about her work in general with IC patients. She said that she and the other leading IC specialist in the nation had actually performed hysterectomies and castrations in an effort to heal their patients!!! She said she felt horrible about it now; but that they were on the forefront of the research being done and at the time, they felt it was their only next step. (Can I open my mouth any bigger is shock and sadness??)
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. They look for the root cause. They do not treat symptoms. They try to heal without harming, with gentleness, with listening; and they have wisdom and knowledge that is more subtle, yet more powerful in most day to day cases, than the scalpel or pharmaceuticals.
The approach most medical schools teach and use is focused on managing symptoms, cutting out sick parts and doing lots of clinical studies. But what about the wisdom from other cultures and time periods? What about learning from Eastern and other non-medical healthcare practitioners?
I began taking Elmiron.
The Mayo Clinic says of Elmiron,
Pentosan (Elmiron)… is approved by the Food and Drug Administration specifically for treating interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency. (source)
Elmiron worked for me. I felt better! BUT. Each pill cost $2. The recommended dosage is to take 3 pills a day, or 3oo mg. $6 a day on medication when you’re in your 30s!? The cost fluctuated at my pharmacy. So, on average, we had to budget in $200 a month for Elmiron.
And if you miss a pill the symptoms come back, right away. So it’s an effective band-aid for some. But I have never been one to stay with (an expensive) medicine if I think I can get well without it, ooobviously. Right?
A little hard work, a little sacrifice is worth it~ for wellness!
All of this happened after giving birth to our second child. After having our third child, in 2009, I got sick in many other ways. Something major needed to change. All of my kids had food intolerances or food allergies, (depending on the definition of these terms that you choose); and we were, to put it briefly, unwell.
We started the GAPS Diet. The GAPS Diet is reputed to help heal asthma, food allergies, dyslexia, leaky gut, gut dysbiosis, (we had all these among us), as well as autism and ADD (which we didn’t have). We started our diet of fatty broth and well cooked meat and veggies. We got better. My IC got a lot better.
Fast forward three years.
I still had some onerous symptoms. I realized that we had zoomed through the first stages of the diet too quickly. (Here’s my post on this topic.) So we all went back to the beginning. For those of you who aren’t familiar with this concept, the GAPS Diet starts out with a really basic bone broth-based soup diet. This is called the Introduction stage. Apart from it being a hard stage, it is the most healing time for the body. So when I went back to this stage, for the second time, my IC symptoms, which were already pretty good, disappeared completely.
The GAPS Diet had mostly healed me. BUT it was the extremely gentle foods of the Intro. Diet that took me all the way home.
How I Reversed my Interstitial Cystitis (with diet)
What I didn’t realize then, you may have already put together: while on the GAPS Intro. Diet… I was not eating fruit. So while, yes, that Intro. Diet allowed my leaky gut to heal more completely, thus eliminating any leakiness that remained in my bladder and urethra, removing fruit from my diet was the hidden power behind that healing.
How did I figure this out? Well, eventually I met my doctor, Jared Zeff ND, LAc*. He helped my daughter by figuring out that her body can’t digest dairy. By eliminating dairy, and with his wonderful use of homeopathy, he put her extreme asthma into remission. As I’ve said, he isolated fruit as my trigger.
Even on the GAPS diet, I felt “off” for years, really heavy and low energy. Upon removing fruit, the difference was amazing. I had no idea that it was fruit that made me feel so bad for so many years. (Again, when I was in better health and living in San Diego’s sunshine, I could eat fruit. But now, living in a colder climate and with failing health, that one thing was the straw that almost broke the metaphorical camel’s back.)
One day, a few months ago, when I was living a fruit-free life, I was feeling SO well that I did what many humans do: I tried something. I wondered how I’d do with say, coconut oil. Each person has some variation in their threshold for the food they’re intolerant to. (So while I can never eat an apple without feeling awful, for example, I might be able to eat curry, that contains allspice.) I ate coconut oil for a few days and seemed to be fine.
But then… I started jumping. (I have a lovely rebounder, which I use for exercise and detoxification.) You know what happened, right? I peed in my pants! AGH!!! Yep, that felt worse emotionally than it did physically.
As I ran to the bathroom, I felt without a doubt that I knew the cause. To be sure, I tried the experiment off and on over the course of 2 months. I eliminated all fruit, was fine, could jump with freedom. I added in a fruit that seemed to leave me symptom-free, like olive oil or nutmeg, and jumped- pee.
So, that’s why GAPS Intro. healed my IC. I was fruit-free during that time period.
What about you? Is there a food that’s sabotaging your health? Medical doctors say there is no cure for IC. But I am symptom-free when I stay away from fruit. So I believe there is a cure; and it’s based in our dietary knowledge and choices.
If you’d like to consult with Dr. Zeff, he would be glad to help you.
As a point of clarification, I do not work with Dr. Zeff in anyway or benefit from you seeking his dietary counsel. I’ve just been helped amazingly by him, as has my daughter; and I’m excited to hopefully share that dramatic potential with you. Dr. Zeff is happy to consult with anyone regarding optimal diets for them and he can speak with patients via phone appointments, if you’re not local to his area.
If you’re interested, here’s 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. The evaluation and brief consult costs $175. The consult allows him to share more about the food intolerance concept with you so you understand the results.
Regarding restrictive diets, they’re the main reason I wrote my cookbook. While starting a new healing diet, such as the GAPS Introduction Diet, is really hard, having tools and alternatives makes it all better. Seriously. All better. Soup is always good. Have soup with a grain-free or gluten-free muffin; and soup becomes fun and great!
If you find out from Dr. Zeff that your body can’t digest fruit, dairy, eggs, sugar… the world is NOT over. It is just beginning! Your journey to whole health is now being handed to you. Your IC may go away completely. And you will find new favorite foods!
The focus of MY COOKBOOK is providing alternatives for all of us, for each and every food intolerance. If I don’t have your needs covered on this blog even, just comment on my post with what you’d like to see; and that’s what I love to do, create recipes for each and every food restriction so that we may all thrive.
Here’s my eCookbook and here’s the softcover print version from Amazon. Every recipe is refined-sugar-free. So that alone helps those of you who are told you shouldn’t eat sugar. There are also LOTS of recipes without fruit, dairy and eggs.
Tangentially, many of you email me about which supplements can help to heal leaky gut and IC. I can tell you which one helped me the most, and one to avoid. Hands down, the supplement that helped to heal my leaky gut more than any other was NAC (find this at your local natural foods store, or check availability online).
NAC stands for N-Acetyl L-Cysteine. NAC is a precursor to glutathione, which is a building block of the gut’s lining; and NAC helps our bodies to detoxify, which is a main theme of the GAPS Diet and healing in general. 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.
(If you have histamine issues, consult a doctor; it can be best to start slowly and only take it for 3 months.)
One supplement to avoid is baking soda. I am always amazed when folks are recommended to take this to reduce their stomach acid or produce alkalinity within their body. We need stomach acid (not acidic foods, which are different) to break down food. The pH of our stomachs must become more acidic when we eat to digest. 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]).
In fact, the best way to improve digestion is to add in fruit-free digestive bitters (find them here). To clarify, having the right pH in one’s stomach for optimal digestion is different than eating acidic foods (which often cause flares). Bitters simply trigger the liver and gall bladder to do what they’re designed to do. Read more about digestive bitters here.
If you, too, end up being intolerant to fruit, I wrote this article with the most comprehensive Master Fruit List of which I’m aware. You may find it helpful to refer to if you choose to do an elimination diet.
Let’s flourish with contentment together. You can do this! Beat IC! Find the diet that blesses your body! And let me know if I can help along the way.
*Dr. Zeff was named “Naturopathic Physician of the Year” in 1989 for his contribution to the development of naturopathic clinical theory. In April, 2002, he was given the first Lifetime Achievement Award of the Northwest Naturopathic Physicians Association for his contributions to naturopathic medical education.
Other sources –
Emily @ Recipes to Nourish says
Such a personal post, thank you so much for sharing this with us. Such a helpful post with HOPE for those who experience this too. Sharing and pinned.
Megan Stevens says
Thanks, Emily! <3 🙂
Teryl Lynn Barrett says
This is a very wonderful post. My problem is that I also have systemic candida. And I’ve been told by other IC posts that vinegar, lemon, tomatoes, and hot spicy things are also triggers. I have looked at the gaps diet cookbooks and they are using these ingredients so I have not purchased them. I’m going to give up all fruit. Blueberries I was told were safe but I will give them up too. My husband is really tired of changing stuff almost on a weekly basis and me too. I’m feeling pretty discouraged right now.
Hi Teryl, I see that you contacted me via email. I look forward to talking with you more.
Hi Teryl. How are you? Do you experience issues with IC?
linda spiker says
Megs…(that’s what I am calling you now) I have a question. My son was severely lactose intolerant and covered in eczema until we figured it out when he was 14. He went off all dairy and now he is almost 23 and can totally handle dairy! NO eczema, no…well you know…unpleasant belly symptoms… so I thought healing was possible and that the enzymes he was lacking he lacks no more and reintroduction was fine. It took seven years of avoiding dairy mind you. So please explain. Because we were excited.
Megan Stevens says
LOL, I’m happy with that nickname, Linda! 😉
Sure, to my understanding, what he had was a food allergy, which can be “outgrown,” so to speak, because you stayed away from the offending food, allowing his gut to heal. We had the same thing happen with our now 11-year-old. He was allergic to literally most foods until he was seven. Because we respected that and kept them out of his diet, he has the now the healthiest gut among us. When he did the food evaluation I mention above, his food intolerance is sugar. He will never be able to eat it or it will cause leaky gut and disease in his body. I think that in the case of your son he never lacked the enzymes to digest dairy. His body was misunderstanding dairy as the enemy because it was intruding where it wasn’t supposed to, leaking through. He doesn’t need to do the food evaluation because he is thriving. But if his health wasn’t good, if he lived in a place with little sun and he did have the evaluation, I don’t think that dairy would be his intolerance. Genetically there would be something else.
The only other explanation is if a person started out in poor health and in a cloudy climate then stayed away from the food, improved their health and moved to a sunny climate, their body would be detoxifying better and they could then handle the food intolerance without it causing symptoms.
The third option, of course, is that I don’t know; and that he belongs to a category or situation that I have yet to understand. My husband once had a friend who was allergic to dairy. Then one day he, ignoring it, went to Wendy’s and got a frosty. After that frosty he could eat dairy. He always said that that frosty healed him. He was a funny, silly guy, but totally in earnest about this. So, go figure! There are a few mysteries that remain. <3
But I suspect your son belongs to the first example, as does my son. They were born with less than awesome gut flora because their moms had less than perfect gut flora. They healed because they were nursed (which included probiotics) and the offending foods were kept away. Their guts sealed; they healed. And the foods they couldn't eat formerly no longer trigger that former response because they are not leaking through.
linda spiker says
You are so sweet to take such time to answer and be so thorough! The weird part is we know he was intolerant still at 21 because right before he left for his mission in Argentina if he were accidentally exposed he would immediately have tummy problems and his eczema was the worst it had ever been. It had gotten so bad on his hands that his skin peeled off in sheets and it crept up his arms. Within four months of being in Argentina his eczema disappeared and he claimed he could eat dairy. I begged him to stay away from it but he said it was no problem. It’s not a Frosty mind you, but he claims Argentina cured him lol. He’s been home for over a year and still no problems. Lindsay on the other hand…aye, aye, aye.
Megan Stevens says
I believe this is due to the sunny climate! I have had similar healing from visiting both LA and the Bahamas. That hot, tropical climate can allow our bodies to heal dramatically, including effective detoxification. (Here’s a post I wrote on this: https://eatbeautiful.net/2017/01/15/7-benefits-sea-sun-autoimmune-conditions/) Lindsay’s progress & healing… some day, too!! <3
Renee Kohley says
This is amazing! I have never heard of this – you are such an inspiration!
Megan Stevens says
Thank you, Renee!! I’m glad it’s not more prevalent than it is; and yet too many Americans suffer from it. Thanks for your kind words!! 🙂
Susanna Zahratka says
This is interesting! Our son cannot digest any fruits and most dairy either. Both were causing him to have accidents and allergy symptoms. Such a bummer but so much better to be symptom free. Thank you!
Megan Stevens says
Yes, indeed! So probably one of them is an allergy and the other is a food intolerance. If he stays away from both for a long time, chances are he’ll be able to have one of them again someday, the one that is the allergy. I’m so happy for you that you figured that out! So worth it. 🙂
Are you able to eat grains and dairy still, or do you eliminate those as well?
Megan Stevens says
Hi Natalie, I do not eat grains now; I expect I’ll be able to eventually. I do eat dairy: raw milk, aged cheese and if I didn’t have SIBO I’d eat homemade yogurt as well. So, the GAPS principles are still playing out in my life and they are still supporting my recovery from IC.
Hi Megan, I had read on naturopathic doctor (SIBO specialist) Alison Siebeker’s 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. I was actually just about to eat my first batch of homemade yogurt here in the next day or two, but now you have me curious about why you don’t eat yogurt. Can you share the reasons why you think it bothers your SIBO? Thank you!
Megan Stevens says
Yes, happily. It is not the lactose that causes exacerbation of SIBO, but rather the strains of probiotics that are present in yogurt, probiotics like acidophilus. These common strains, despite being good bacteria, quickly overgrow in the small intestine and make those with SIBO bloated. Here are the two probiotics that are SIBO-safe, that I take myself: http://amzn.to/1Oty02O and http://amzn.to/1Otyaaq Best to you!!
Thanks Megan! I just ordered GutPro because it is a probiotic that is low-histamine friendly. Looking at the label there is no acidopholis, so that’s good. Are there other strains or a list somewhere you can refer me to that will say which other strains should be avoided for those with SIBO? Thanks!
Megan Stevens says
I’m afraid the list is too long. 🙂 SO many flora in the world and most exacerbate SIBO. The two products that I highlight and link to above are the only two that I know of that are totally SIBO safe. I hope yours is a good one, too!!
Thank you so much for sharing this information! I will try the doctor you suggested and your recommendations.
Thanks again and glad you are well!
Great, Ronda, and best wishes!! 🙂
Can you name these? The links won’t work for me.
I’ve been trying to heal my bacterial overgrowth and have not been able to tolerate probiotics. They flare everything up, including my symptoms of urinary urgency. My Functional med provider has recommended fermented foods as an alternative. What are your thoughts? Thank you!
Hi Kay, which links are you referring to? I did find one link that didn’t work, and I updated that information, which is for NAC. It’s a little harder to find online right now, but there are sources (like from Vitacost or natural foods stores). If everything is flaring your urgency, even fermented foods may do that. I give a link at the bottom of this article to Sacc. Boul. probiotic which is a soil-based bacteria/yeast that is super gentle. I’ve never known anyone to flare from it. And it’s helpful. Here’s a good reliable one: https://amzn.to/3Jf7slW I am not a doctor, but from my personal experience, this might be a gentle and more effective option to consider. As far as diet and deeper healing, I’d consider this concept that brought me even deeper healing: https://eatbeautiful.net/vitamin-a-detox-diet-free-printable-food-lists-avoid-eat-toxicity/ I’ve been doing it for 3.5 years and can now eat more foods than ever before + have zero symptoms. Blessings!
Wow. What a great article. I have IBS and have to really adjust my eating habits. Dairy is my trigger but I’m still in the process of finding different things that bother me also. Getting older and having issues like these are no fun, but its so wonderful to find support and natural remedies.
Megan Stevens says
Yes, having support and figuring it out! Hugs! You’re awesome. So happy for what you’ve figured out so far, and for your improvement.
Anna @GreenTalk says
I am so glad you are better. Thanks for sharing your story.
Megan Stevens says
Really informative post, I have never heard of this before. I love all the honest information you have given us, I’m sure it’s helping so many people out there.
Megan Stevens says
I hope so. Thanks, May.
Mimi Kelly Johnson says
Thanks so MUCH! Did you wait to start the probiotic supplements? When did you introduce them into your regemin? Dr. Seibecker also says that Acidophilus and Bifido are safe for SIBO? How do you know you have SIBO? The book, Fast Tract Digestion: IBS offers some nice quantitative guidelines for SIBO so you can keep in more foods you might want to review this book it is a game changer for managing SIBO. I dont see how GAPS unless modified is complimentary or supportive of SIBO? There is a lot of fermentable food in full GAPS and so quantities are going to be VERY important? 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. How long did you end up being on GAPS intro? Also, If you have SIBO and you heal from SIBO then per Siebecker you will heal your villi and be able to absorb fructose again?? Also doesn’t GAPS heal villi so you can eat fruit again? Sorry so many questions.
Megan Stevens says
Hi Mimi, the probiotic supplements I take can be started at any point, because they’re SIBO-safe. I will add them at the bottom of this post. I have read Fast Tract Digestion. It is indeed a great resource. No, although Dr. Seibecker says that Acidophilus and Bifido are safe for SIBO, unless they are in teeny quantities, I do not find this to be true. In teeny quantities, yes. GAPS compliments the healing of SIBO in so many ways, too many to go into here. Not for those with histamine issues, but otherwise, bone broth is excellent for the ph of one’s belly which sets all the digestive mechanisms functioning more properly, including the ileocecal valve. GAPS’ purpose is to heal the gut, which indeed helps to heal SIBO, at the very minimum supporting the healing process. I was on GAPS Intro maybe 3-4 months? It is hard to remember now… My not being able to eat fruit is not related to fructose malabsorption. I can still have honey, for instance. It is fruit itself that I can’t have, even though my villi are healthy. Hope that answers all your questions. Good luck and blessings in your process!!
Mimi Kelly Johnson says
Thanks megan! I keep adding acidophilus and/or bifido with some other herbs and they help for a while and then they stop working and bifido causes bladder pain for me. I know I have Histamine INtolerance and disbiosis. I am working to lower my Histamine bucket before proceeding to GAPS. How did you know it was time to go off the intro phase of GAPS? Did you ever have histamine issues (so common with IC). Thanks!!!
Megan Stevens says
Sure, Mimi. With the Intro phases of GAPS I made sure that I was stable, meaning I could introduce a new food and flourish with it, no new symptoms. If I couldn’t introduce a food on the next stage then I’d stay put. I tried to stay with each stage for several weeks to be sure, to allow healing to happen. I have never had histamine issues, thankfully; but I have many clients with them. Sorry for your challenges!
Mimi Kelly Johnson says
Thanks Megan! So are your IC clients with histamine Intolerance improving? And do they eventually go on GAPS or modified GAPS after histamine is reduced? Thanks!
Megan Stevens says
Hi Mimi, everyone is so different. I have clients who just do the Paleo diet for IC; and not all have histamine issues. The most important pieces, in my opinion, for IC are going firstly grain-free and refined-sugar-free, pulling out dairy, eggs, and fruit in the beginning and secondly to have the food evaluation done while doing the above diet so you know which food to not add back in. Hope that helps!
Mimi Kelly Johnson says
Hi Megan I have been sugar free for 3 years. Grain free for a year. Recently all fermented dairy is out. No fruit for a long time but still symptomatic. Low histamine/anti histamine has given me the best digestive changes so far, but that is not a grain free diet by any means, as actually with Low histamine diet, meat has to be low, and fermented dairy has to be out. So initially the low hist diet is kind of the opposite of the diet you described, but hopefully I will get to GAPS when my inflammation is down. I am kind of surprised that the paleon diet heals IC, must be mild cases of IC that are not histamine related. Never did a thing for me. What food evaluation do you recommend? My nutritionist says the food allergy testing is not reliable. Thanks!!
Megan Stevens says
If you read the above article it discusses this. The food evaluation is gone into in great length as well as the contact details of who provides the kit.
Mimi Kelly Johnson says
Megan Stevens says
You’re welcome! 🙂
Hi Megan! This is super interesting. What oils do you use for cooking if not olive/coconut? After reading your article I cut out olive oil as a test (I am already fruit free for months due to apparent intolerance). It’s only been 2 days but I have been feeling better. I’ve been having coconut oil instead. What could I use if not coconut/olive?
Hi Tara, there are two actual oils that are good ones to consider: One is algae (https://amzn.to/2YvKEGj), and the other one is perilla (https://amzn.to/30d4iIN). Both are good because they’re also lectin-free, which just avoids one other issue that can aggravate. Two others that work for some are walnut oil and toasted sesame oil. I don’t like to overdo any seed or nut oil, so personally I use a lot of Kerrygold butter and pasture-raised lard. Even for salads, I fry garlic in butter or lard, add sea salt and drizzle this over my lettuces. It’s lovely. I’m happy you’re seeing improvement! Good for you and best wishes!
Hi Megan, What a blessing to read your blog! My brother Jami referred me to you. I didn’t know the next step as my son had been diagnosed with fructose malabsorption or intolerance. I don’t think they know. I had to even ask for the test as the doctor kept thinking it was tummy migraines or anxiety. We had him scoped too, and it turned out he had some inflammation. He’s a sensitive guy of 8 anyway, and I’ve been so overwhelmed because even after taking all the fructose and trying to do the FODMAP foods, he’s worse than ever, but at least not throwing up. I have 8 children, so though you’ve given me much hope and direction with the GAPS diet, my husband is wondering if it’s good for all my children to do the diet- if it will provide the energy and sufficient nutrition for them. They are ages 5 months (she doesn’t count) to 9 years old. Some have allergies I had to diagnose on my own as well- one with corn, though I’m sensitive to that too, one with legumes and cranberries, another with beef. Some seem to have grown out of theirs. Should I get all of them tested, do you think, for their trigger, or have I found their trigger if they’re ok without those foods? Also, thank you for your time doing this. My little guy suffering so much is way whiny, and I’m kind of dreading doing this unless I at least do it with him, or all of us do it. He’s already feeling very sorry for himself- any advice?
Megan Stevens says
Hi Charissa, thanks for sharing! Yes, my best advice based on my experiences, is indeed for your whole family to go on GAPS, especially if you home school. This support will be a deal-maker for your son. Like I’ve said in other posts, a few extra GAPS baked goods (not too many nuts, and only sprouted nuts) in the beginning can make it easier…or whatever you, as a creative mama, can do to make it fun/smoother on them to transition. Your husband’s concern is a good one. As evidence, our family is THRIVING. We’ve been on it, as you know, for over four years with zero cheating. My kids are tall and strong, athletic etc. I do emphasize lots of winter squash, lots of fat, raw milk ice cream, grass-fed protein (or seafood) and bone broth at every meal, or gelatin tea when I see they need an emotional break from bone broth… I would get all of your kids tested, according to your budget. So, your son first and then as many at a time as you can afford until you know all of their intolerances. It will add some inconveniences (especially no eggs, in my opinion) but it’s worth it. (Is there a sweetener your son can have?- hardwood xylitol or stevia?) Hugs, you’re awesome!
Diane kehn says
Do you make your own bone broth, and if so can you recommend a recipe? If you buy a commercial bone broth, which ones do you recommend?
Hi Diane, yes, and I have some pretty important tips in this recipe post: https://eatbeautiful.net/2014/07/23/how-make-bone-broth-avoid-rancid-fat/ I don’t ever buy it. Blessings!
Joy Gardner says
When you started using the GAPS diet for your interstitial cystitis what supplements did you use? Did you start them right away or add them in at different stages?
Also, I am a thin person. I worry about getting enough calories to keep the weight on. Do you have suggestions?
Thank you, Joy
Megan Stevens says
Hi Joy, I started GAPS with zero supplements as Dr. Natasha advises or implies. She does advocate for including very well chosen supplements. So over the last almost 5 years that’s a lot of what I’ve studied and tried to figure out, even by trial and error. I highly recommend D3. But no supplement works in a vacuum, as you know, I’m sure. Co-factors are key. So, in the end, I take many supplements all of which I consider essential to how well I am. I plan to write a post with more detail in the future. It is just too much for here. For now, I take 5000 IU of D3 daily. The dosage and necessity of any supplement varies depending on the individual, of course. 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. These supplements may seem peripheral to IC; but I believe they are only secondary to pulling out the food intolerance. Re your weight- I would say EAT. I know this may seem shallow and too simplistic; but I have found that a lot of my clients who struggle with weight loss simply don’t have the desire to eat till they are very full. They are minimalists when it comes to food and quantity. Eat more. Eat more often, whatever it takes. Get in more calories. Add honey to your ginger or mint tea. Eat lots of winter squash, with fat and honey on top. Be excessive, not sparing with yourself. It is a mindset shift, I know; but FEED yourself, knowing you need it to get well. Blessings!
Hi Megan! I am so happy to read this and see you have healed yourself, as I am also on my journey to heal my cystitis. My question is, do you think leaky gut caused your IC? Or just .. Fruit??
Megan Stevens says
Hi Karen, I think that other things caused my leaky gut, (other than fruit), things like not being breast fed (beyond 6 weeks), lots of antibiotics growing up and a vegetarian diet with lots of whole grains. I believe that IC was my body’s aggravation or furtherance of leaky gut: leaky gut in my urethra and bladder. Fruit simply made it worse and was the digestive road block to it healing. I hope that helps!
Megan Stevens says
Also, to clarify, not everyone with IC will have fruit as their food intolerance. For some it will be giving up dairy, eggs etc., depending on their evaluation’s results, that will help, in my opinion.
Thank you so very much for this post and for responding to me. You have given me reassurance that I am on the right path.
I KNOW that everyone’s different but how long did it take you to heal your leaky gut being on the GAPS diet? I’ve been doing it for a few weeks now and felt almost instant relief, although I know real healing will take a very long time.
God Bless you and continue to be well.
Megan Stevens says
Karen, it took me longer than most. I was quite unwell when I started out and didn’t know to remove all fruit. It took me 4.75 years on the GAPS diet.
Megan Stevens says
Blessings to you, too! I’m SO thankful and glad that you already feel relief and improvement!
Jill Boman says
Amazing story, Megan. Thank you so much for sharing! I wonder if you’ve ever heard whether or not IC and lichen sclerosis are in any way related (other than the immune system being somehow compromised and both being influenced by hormones)? Years ago I too thought I had a bladder infection and after weeks of unsuccessfully attempting to kick it on my own went to the doctor for a urinalysis, but was surprised to discover that there was no infection. The problem was much worse before I started my period each month and I had the same symptoms you had with urethra pain. Except, I finally noticed the tissue near my urethra had a white patch/streak that decreased when my symptoms were less and increased in size and noticeability when my symptoms increased. I had at first thought I had IC, but then further research turned up lichen sclerosis as a possibility. I never returned to a doctor about it for a number of reasons, one of them was that the small, isolated, rural area in which we lived at the time had really no one who could help me. A few years later we discovered my daughter had multiple food allergies, and then later stumbled upon the GAPS diet. When our entire family’s diet changed to help accommodate my daughter’s dietary needs (no wheat/gluten in the house at all, and no processed foods, though the rest of us didn’t fully do GAPS ourselves), my symptoms WAY improved! Now I notice if we travel and I eat wheat and processed food for several days my symptoms will sometimes flare back up. Long story, I know, but I’ve never known for sure whether I had IC or IS, but I did learn that removing certain foods could clear it up. This is the first time I’ve ever heard someone else’s story that resembled mine, so again, thank you for sharing. It would have been so encouraging to me years ago when I had no idea how to help myself!
Megan Stevens says
Hi Jill, thanks for writing! I’m so sorry about your struggles with IC or lichen sclerosis and so glad you found relief!!! I’m glad to hear your story, too!! And may both of our stories reach more folks who still haven’t found the link between diet and healing. I’m so thankful there really is a solution. Many blessings to you!! xo
I really appreciated your article. I also have IC and have done almost everything medically I could. After I read your article I decided to see if i had any food tolerances and decided to eat only bone broth for a while. I was wondering when you started eating bone broth In that first week did your spasms (if you got then) get way worse ? I am not sure what it is but i am only on day 5 and day 4 I was in so much pain I could barely move. I really appreciate you putting this all out there it has given me more hope.
Brianna JC says
Hi Megan! Can’t thank you enough for posting this! I’ve been doing an anti-candida diet for over a year now after my symptoms lined up with IC. (I did see a urologist for an exploratory who told me I don’t have IC. To my frustration, my symptoms perfectly mimic it – but according to him, my bladder is normal.) I did see an herbologist who told me in her experience IC is linked to candida overgrowth, hence the strict anti-candida diet. I’ve 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’m getting married in October and really want to be healthy by then without the anxiety of intimacy that most IC sufferers experience. I googled “God heals Interstitial Cystitis” tonight and your post came up. I read it and thought I would give Dr. Zeff a call. I sent for the blood test and am anxious to see if there is something I have been missing that could be the link toward complete healing in this area. It’s another start to what I pray is the last leg of the process. Thank you so much for sharing your journey to total healing. It’s so encouraging to hear there IS a cure beyond supernatural miracles! I’m sure I will have more questions when I get the results. Just reading through the questions is so eye opening. Anyway, God Bless you and thank you so much for sharing your journey!
Megan Stevens says
Oh, your sharing makes me so happy. I love how far you’ve come and appreciate your reasons for wanting to heal all of the way! Wonderful. One supplement worth looking into as well is N-Acetyl L- Cysteine. I need to write more about it. But I believe it REALLY helped to seal my gut, in addition to the other things I mention here in this post. It’s a precursor to glutathione. Many blessings!!!
Erin Hindalong says
Thank you so much for sharing!!! I have IC and I am vegetarian. How do you reccomend I start with the bone broth? 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. It makes me sick to think about bone broth….yuck. But i DO want to heal. How should I start? I also have asthma, allergies, skin problems, etc. so I wouldnt be suprised if it was leaky gut. Thank you!!
Megan Stevens says
Hi Erin, I felt the same way. I was a vegetarian for 10 years and the thought of meat and meat fat totally grossed me out. When you’re ready for bone broth I recommend you start with chicken. It has the best flavor, which will help some. You may wish to start with gelatin or collagen stirred into herbal tea. I was afraid I would get sick the first time I ate meat also. Yet it digested completely without incident. Ironically, meat is actually the easiest thing for our bodies to digest, other than meat stock (an early stage of bone broth). The meat needs to be pasture-raised to be good for us. Animals eating what they are meant to eat produce healthy meat and fat. Feel free to look into my consulting if you feel that would help you. Many blessings. I know it’s really hard in the beginning. The GAPS Diet is my recommendation. 🙂
Jennifer Gibbons says
Thank you for your work. We had the Food Intolerance Carroll testing done and found that my husband can’t have dairy, I can’t have wheat or fruit, and have combination issues w potato w grain, 1 child can’t have wheat or dairy and has fruit combination issues, 1 child can’t have fruit and has potato grain combination issues, and 1 child can’t have fruit, wheat, or dairy and has potato grain combination issues. I understand the theory is that we don’t make and never will make the enzymes needed to digest these foods. Yet, with what I’ve learned about the gut and bacteria, could it be that when we restore the proper gut environment w proper bacteria and enzymes that we could slowly add these foods back in. I’m concerned that if we completely remove them, that we will starve the bacteria that lives on them and allows us to potentially break them down. Also, how could we eat like this. No butter,ghee, or dairy for some, no fruit for anyone, no wheat, no potato combination within 4-8 hours. With this, we can’t even eat the full GAPS diet. As a Christian, I just can’t believe that God made all of this good and yet we can’t have it. Also, we have been gluten free now for years. But, the fruit and dairy is new. The issues I can see that our no dairy ppl have is eczema at worst. The issues our no fruit ppl have is exhaustion to asthma and rashes and joint pain..so that’s more serious for sure and has made a huge difference in us removing it.
Megan Stevens says
Hi Jennifer, great questions and conundrums, for sure. <3 Well, it gets a bit philosophical and personal, doesn't it? I think it's great the clarity and resolve (and improvement!) you see in pulling fruit from those with more serious symptoms. YAY! As for the others, it's a personal decision. Personally, we do it. It's hard and a bit crazy; but we're also finally used to it. But that doesn't mean it's what's right for you. Perhaps limit dairy for those who aren't supposed to have it; and consider pulling it out entirely if their symptoms get worse or new ones surface. 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.
Of course, you need to maintain emotional peace as well. So if you are stressed trying to make everyone's different food, that's no good. Currently I make 3 baked goods a week: one egg-free for my youngest, one dairy-free for my teenager daughter who goes to high school and needs packed lunches, and one that's fruit-free. I usually bake on Sundays and then my whole week is set with healthy carbs that each person can have. Salad dressings, soups and other entrees are pretty easy to make for everyone- most of the time.
Blessings as you figure out the right balance for your family!! 🙂
Tami Peters says
I had the Food intolerance Carroll testing done and Fruit was the one I needed to completely eliminate. Are you still not eating fruit? Do you have a list of fruit free grocery store items that you love? I try to eat fresh veggies, meat and eggs……but I love fruit! What do you eat to curb this craving? Any ideas on beverages?
Megan Stevens says
Hi Tami, I found that it is a process to adjust. Correct, I still do not eat fruit and don’t ever plan to. Here are some foods I’ve found to be helpful: yacon! (it’s a root; you peel it and slice or cube or eat whole; it tastes like apple + mango; it’s sweet and juicy etc.; you can also cook and then puree it to make “applesauce”); rhubarb (see my Rhubarb Sauce recipe or make cobbler/crumble); use herbs like lavender or mint (or their essential oils) to make steamers (I have a lavender steamer recipe here on the blog); make iced tea! 🙂 (unfortunately some of the fruitier teas like hibiscus have turned out to have fruit in them; but you can do tea flavors like Honey-Lavender etc); use carob (it’s fruity and chocolatey all at once); herbal coffee is great for me, too. Use pumpkin and sweet potato to make treats. Hope these get you started.
Rachel B says
It looks like I have IC. I’m nursing my baby and finding a huge milk supply drop when I cut out too much food. I need the calories to maintain my supply. What are some of the safest foods for me to eat? How do I find a naturopath to test me for intolerances mos accurately? Thanks!!
Megan Stevens says
If you scroll up just slightly in the article there is a link to Salmon Creek Clinic and Dr. Zeff. He can send you the food intolerance kit in the mail. Regarding foods, until you get the evaluation’s results back in the mail, it’s hard to know for sure. Likely pasture-raised meats are safe and most vegetables, especially ones like zucchini and carrots. If you tolerate sweet potatoes well, they’re caloric and nutritious, a very good choice topped with fat (butter/coconut oil). Animal fats are best, though. Indulge in bacon; see how you do with white rice. Try to include protein, fat and carbs at every meal. The most common food intolerances are dairy, eggs, and fruit. So you can try to have those foods separately from each other to observe if there’s an improvement without one, or if you get worse when you eat one. But, of course, that’s tricky because foods can stay in our bodies and create symptoms for over a week. Best to get the evaluation done soon and do your best until then. xo
Thank you for your story. I was diagnosed a few months ago with IC after struggling on and off for years. The urogyn I went to see did bladder installations on me which made my bladder symptoms 100x worse and even brought out new symptoms. It was awful. I went to a herbalist and she said I have terrible candida in my body and put me on a strict diet (no caffeine, alcohol, fruit, vinegar, grains, sugar and dairy) and supplements. I noticed a huge improvement for a few weeks, then it will reverse (usually hormone related). What next step do you recommend? Good allergy testing? Cut more out of my diet? (Eggs, etc). I live in the middle of nowhere, Midwest so alternative options are difficult to find. I was never breastfed, struggled with UTIs and antibiotics, vegetarian for years. Thanks, loved your story. It gives me some hope!
Megan Stevens says
Hi Michelle, I’m sorry for your suffering thus far! I do recommend that you get the food intolerance eval. done with Dr. Zeff, through the mail. (I include his information above in the post.) Then you’ll know which food to cut, which food is tripping up your healing process. I also recommend that you begin a gut-healing protocol. GAPS is probably the best diet. gapsdiet.com will help you to get an idea, and you’re welcome to set up a consultation with me if you’d like guidance. Here’s the book to order if you decide to go this route: http://amzn.to/28RRfFE Once you have the results back from Dr. Zeff you’ll know if eggs, dairy etc are helpful to you or not. This will help guide you on the GAPS Diet and make your process faster and more effective. Blessings, and yes, have hope!
Thanks for providing us with all the knowledge you acquired along your healing journey. It was very interesting and helpful.
I was diagnosed with IC last year and preserved an antidepressant, however I was reluctant to take medication. I tried an elimination diet however it didn’t reduce my symptoms of frequency.
The symptoms I have are frequency, gas and bloating and a few food insensitives such as stomach aches after eating yoghurt.
I read about the Diet you mentioned and Leaky gut. But I wasn’t sure if it would reduced urinary frequency? I can’t seem to find anywhere that says frequency is a symptom of leaky gut.
My question is, would you recommend the GAPS diet if the main symptom I am experiencing is frequency? Do you think this could be caused by leaky gut?
Megan Stevens says
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 you’re intolerant to, that need to be avoided completely. Also best to avoid any foods that are creating the symptoms or making them worse, like yogurt. Those are the best places to start. There are always smaller pieces to coordinate as you progress on the diet, usually adding in a few supplements. But the diet and eliminating food intolerances are the first and most important steps, in my opinion.
Thanks for your fast response Megan! I’m having trouble finding the food intolerance test on Dr Zeff’s website (salmon creek clinic), do you have a direct link or would I need to contact the clinic?
Thanks again for your time,
Megan Stevens says
Sure, no problem. Go to this page: http://salmoncreekclinic.com/contact/ and you’ll find the phone number there. 🙂
Penelope Michaelidou says
Hi Megan, thanks so much for this blog.
It is really encouraging to know that there are people who have managed to heal this condition.
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. But i am not symptom free and I do have pain almost all the time..
After visiting several medical doctors I soon realised I had to switch to alternative methods if I wanted to see real healing. I do believe that the body is one system and that if we want to find the root of the problem we have to go beyond symptoms.
Following your advice I contacted Dr Zeff and sent him a blood sample (even though I m based in London). I also had a Skype consultation with him. He sent me back his dietary recommendations. His advice to me was to eliminate all fruits (same as yours). I have started doing that. I haven’t been a great fruit lover, so it wasn’t too hard to do this. But it is strange on how me consuming the little fruit I was consuming could actually have led to this condition 🙁 .
In any case, what I wanted to ask you was whether you were also following any other dietary recommendations along with the fruit elimination diet before you went symptom free.. and how long was it before you started seeing some improvement. I am struggling at the moment with diet and nutrition. I have eliminated fruits, I am vegetarian (by choice) but I eat fish,I am staying away from IC trigger fruits according to IC diet and finding what to eat has become a struggle. On top I am worried that by all these restrictions I don’t have a balanced diet which could lead to further problems.. What would you recommend me to do? Any advice would be greatly appreciated..
Megan Stevens says
Hi Penelope. I’m happy to meet with you. 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. Also, what are your secondary food intolerances (the combination)? I assume that is being applied as well. I think meeting would be best in your situation, because there are too many details to provide adequate support here. We can Skype, too, if you’re interested. Hugs and sorry for your discouragement. 🙂 I’m glad you talked to Dr. Zeff and have that information! It’s a good start!
Lynn Toler says
I fasted for a month and was symptom free for 10 years, after suffering for 10.
Then I ate something containing sun dried tomatoes. That is what triggered the first round.
Now it’s back.
I tried to fast again, but only made it through day 7.
L Arginine works to knock out the pain, but it’s a bandaid.
I am excited to try the gap diet. I’m going to Thailand in December and very much want to enjoy the curries there. Again, thank you for writing this. ❤️
Megan Stevens says
You’re welcome. Best of luck!! xo
Hello! My name is Rachel and I am 19 years old. I started suffering from symptoms of IC and IBS about 6 months ago. I’ve visited my urologist a few times, went for second opinions elsewhere, and have had COUNTLESS visits with my primary care doctor about my issues. I have found hope by reading your forum, revisiting it everytime I am in dispair of my (what seems helpless) situation. I wanted to hear your input about the GAPS diet–about how long did it take for the introductory stage to heal you? And–when it did–did you continue to stay on this diet or were you able to reach out to other options?
I find hope in hearing from those like me who have my same struggle beat the situation.
Thank you for taking time and sharing your story with us.
Megan Stevens says
Hi Rachel, how long the diet takes is different for everyone. I had already been on it for years before I discovered the concept of food intolerances and cut out fruit. So my healing was immediate, when I eliminated fruit. I am still phasing off of GAPS now, basically practicing a modified Paleo diet. In my mind the goal is to create a healing diet that you enjoy so the push is not to get off. The goal is to find contentment and healing in the same place. Complex carbs are important, so modifying GAPS is part of the end goal, too. Starting GAPS Intro is a great place to start, and getting results from Dr. Zeff is also important, in my opinion. xo and blessings!
Michaela Gower says
Hi Rachel! I would like to get in contact with you regarding IC.
I have IC. Was diagnosed when I was 40 .I am now 55 years old I have basically cured myself as well. I believe strongly that we can heal ourselves. I have to take issue with your comment that equates poor nutrition with a vegan diet. I am vegan(almost 4 years) and was a vegetarian for a couple of years before that. becoming a vegan has had no negative impact on my IC. If anything, I feel better than ever . Its really important to know you CAN feel better. And even more important to know that if symptoms return, they will go away again. That is one of the most important lessons to learn, because early on, if I had even a twinge in my bladder, my anxiety was through the roof. Now I have lived through enough flares, and “twinges” to know that just as they came, they will go. I eat whatever I want now. 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. I may, MAY pass on coffee that day, and if I’m heading out, I will make sure I don’t wear anything that makes my bladder or urethra uncomfortable. I try not to have to raise my voice for anything during those times because I feel that in my bladder as well, and I’ll avoid the gym that day. I find guided meditations help, but I enjoy doing those everyday regardless. The important thing is, you must take care of yourself and be patient with yourself. Try to control your anxiety and remain hopeful.
Megan Stevens says
Thank you for sharing your insights and experiences. So glad you are encouraged and experiencing wellness.
I know this is an old thread but I’ve had ic for over 30 years. I’ve had flares and remissions, some lasting as long as 3-4 years. I am wondering sistadana how you cured yourself.
I’m now in a flare and I suffer extreme anxiety and depression fearing I won’t be able to work. I’m on my own because I’ve avoided relationships with men due to the ic. I have been gluten free and kindof was negligent taking Elmiron and now in flare. In remissions I eat whatever I want and it doesn’t seem to bother my ic. Each flare I agonize over if and when it will go. How did you cure yourself?
Hi Anne, well let me first say that this is been about the worst month and a half I’ve had in a long time. I Had a lot of stress in my life and I got sick with a fever and on the heels of that I had an IC flare, which has been ongoing for a month but is now I think improving, but now I am sick again with a fever. I’m not really sure what caused this flair, so that’s sort of a first, but that said, I’ll try to be of some help fully not just Repetitive. First of all, I completely understand your anxiety wondering where this will go. That is a huge component to what makes this so debilitating. It’s very hard to explain it to anyone who doesn’t have it. The most important thing to remember is that it has come and gone before and so you should trust that it will again. Next, I have not cured myself but have my go to plan that helps me cope and, I believe, recover. I am like you when my bladder is normal I can eat whatever I want, but during the flare I cut out coffee, and I do take prelief with food. I try to cut out sugar and processed foods–none of thise things are really good for us anyway. I continue to take a probiotic. I do not take any nsaids, in fact I’m tempted to believe that it may have a brought on this flare because I was taking double doses of ibuprofen when I was sick the first time with the fever. Comfort care includes using a heatie and hot shower, especially before bed. I have everything ready for when I get out of the shower so that I can go right to bed. In other words, I’ve already brushed my teeth and whatever I need to do so that I can go right from the shower to my bed with a heatie. Another thing I do is fill up a pitcher of water with 4 cups. I’ll never drink 8 cups a day, and I don’t always drink the four, but I have an idea of how much I’m drinking and then I also measure how much I pee. It helps me feel I have some control to write everything down, everything I ate, when I took a prelief, when and how much I peed(just keep a measuring cup in the bathroom). I don’t push myself to drink an excessive amount of water, unless my bladder is very uncomfortable and I feel I need to flush it out. Otherwise, I drink when I feel thirsty. Fields are just constantly be drinking water is actually making the bladder work harder and when you having a flare maybe it needs to rest a little. Just a thought. I also try to resist the first urge to go unless it’s been a few hours. Sometimes the feeling that I need to go passes other times it doesn’t and if it doesn’t then I’ll go to the bathroom. I also try to rate each day or make notes as to whether it was a terrible day, an ok day or a great day. This helps you see that maybe things aren’t as bad as our brains are telling us, and also helps you see when things are improving or even how what you ate one day made something worse. It really helps me to keep track of all of this, plus it serves as a reminder the next time this happens if it does, that I can weather the storm and get through it again. I’m sure you know that you should not wear clothes that aggravate that area or put pressure on that area. Finally I do find listening to guided meditation’s that you can easily find on YouTube very helpful. I know it is next to impossible, but you must try not to worry. Fortunate that my husband will frequently reassure me that I WILL get better. I know you don’t have that but maybe you have a friend who can check in with you every day. So my flare I’ve had a friend that’s texted me almost every day asking me how I’m doing. It’s amazing how wonderful that is to just know that someone checking in on me. I hope you can find someone who can give you some support. If you have any other questions feel free to ask and I’ll try my best
JoGrow Smith says
Megan did mention that different things work for different people. I am looking into all of this for my husband. I am just starting… it is going to be a long haul probably because he is not one to change his diet if he likes the food to feel better. He is learning. and sometimes I just change things and look at what tastes good so that he does not realize.
Amber Brewer-Allison says
Thanks for that encouragement. I have struggled with urinary issues for YEARS and was just now diagnosed with IC. I really appreciate what you said. Look forward to saying I am healed! 🙂
Yes, stay hopeful. Talk out loud to yourself..” I will get better” . You will get better. Be patient with yourself. You may have to modify your diet, but attitude is extremely important. Don’t give up. ❤️
Krystal Dobrin says
But how exactly did you cure yourself? Reducing stress and leading a healthy lifestyle? Please, I need to know. I’ve been recently diagnosed and I’m freaking out thinking I’ll never get better, and I am terrified to stay on strong medications that don’t help much anyway..
Layla @ Bladder-Help says
Hi Megan, Thanks so much for sharing! I’ve had a similar experience. 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. It took me 6 months on the intro diet! I now follow a paleo style diet and the IC has never come back 🙂
Megan Stevens says
Hi Layla, wonderful!! Thank you for sharing! 🙂
Natalia McCarty says
The GAPS diet contributed to me getting IC. It’s one of the absolute worst diets to go on for IC. Ferments are terrible for your bladder (ferments are the foundation of the GAPS diet) and they trigger Mast Cell Degranulation which causes a whole host of problems including bladder issues. I have Mast Cell disease like the other 70% of people that have IC so I’ve found it best to listen to Mast Cell and IC experts who are incredibly educated with the diseases unlike Dr. Natasha. I’ve literally gone into Anaphalaxis from BioKult and FLCO even though I had been taking them for 4yrs at the time (2yrs ago). I read an article where Dr. Natasha tried to treat a lady with IC and the lady was going into Anaphalaxis (the ladies lips were swelling up…classic sign of Anaphalaxis) after consuming seaweed supplements and Dr. Natasha described it as “die-off”. That’s crossing the line to being a Quack.
Mimi Kelly Johnson says
Natalie. I totally agree with you. There are low histamine, ferment-free versions of the GAPS diet where you freeze the broth, and dont cook more than an hour. But i agree Natasha McBride is way out of her league with IC. It did not help most of the IC women I know. 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.
Hey Megan, I know this article is old but wanted to know if you have
ever tried D-Mannose and experienced any relief? It always helps me
with UTI’s and urinary tract pain and I wondered if it could help some
IC sufferers and if you’ve every tried it?
Megan Stevens says
Hi Asia, D-Mannose is indeed very helpful in many UTI cases. But it will not help IC. Thanks for the great question!
This is not necessarily true. On the IC Network there are multiple reports of remission using D-Mannose. I am currently on my 2nd week of using D-Mannose and it is starting to reduce my bladder pain and frequency. Not a lot, but noticeable as compared to my normal agony. I was diagnosed IC 21 years ago and got much, much worse 4 years ago when I started peri-menopause. I follow the IC diet, am on the medications, but nothing works. I am hopefully D-Mannose will help me long term.
Hi I very much enjoyed reading your article. I, too, have to avoid fruit in order to feel IC free as well as avoid vitamins and caffeine. So that is my question, how do I get the vitamins I need if I can’t eat fruits nor vitamins? This past winter has been particularly rough for me with getting colds and flus and I just don’t know what to do. 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. Any suggestions?
Megan Stevens says
Hi Megan, when you say you can’t have vitamins, I wonder if that is perhaps too narrow an understanding of which supplements may aid your body? For example, can you not tolerate any alcohol-based tinctures? Examples include goldenseal. Can you tolerate raw garlic pressed or minced? (This I take on a spoon with water, like a pill for excellent immune support.) Can you tolerate straight reishi mushroom in a capsule, no additives? There are many sources of whole food supplementation that will strengthen your body. They do not contain fruit, and they are not synthetic. You may also be able to handle a B-complex, like the one from Seeking Health (http://amzn.to/2oAKz33), or their D3 + K2. I hope that helps! 🙂
Hi Megan I have IC for 10 years I believe it’s caused by infections maybe lyme or candida….. I think once you have Interstitial cystitis it causes permanent nerve damage nerves cannot be healed so I’m glad the diet is helping you feel better but you will always have Interstitial Cystitis……. Also once you have leaky gut diet alone won’t heal the lining of the stomach because of SIBO (small intestinal bacterial overgrowth) which means you have a bad infection in your gut and in order to really heal your leaky gut you need to kill the infection…….. Im trying chlorine dioxide (mms/cd) I don’t know if it will heal my leaky gut but I’ll try anything of course I will eat a vegetable meat water diet plus I use apple cider vinegar oil of oregano and diatomaceous earth…….. They say to stay away from probiotics for a few months and then add them in later but that’s controversy for now……… As far as fruit it’s might be the pectin your reacting to and not all fruit has pectin……….. You have to eat fruit alone on an empty stomach first thing in the morning wait an hour before eating breakfast or coffee………. Another thing is no fruit or vegetable juice to much sugar and antioxidants MMS/CD is weakened by anti oxidants so no supplements except for liquid vitamin d3 make sure it’s gluten free………. I hope this helps you in the future all the best
Lara Ahmed says
I haven’t 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 . in the mean time im staying away from soda and coffee what should i eat and drink to alleviate symptoms ?
Megan Stevens says
Hi Lara, you can start a healing diet, either GAPS or AIP. And you can eliminate fruit. 50% of all IC patients have fruit as their food intolerance. If you feel well, excellent! If not, I’d call Dr. Zeff and get the kit to find out your food intolerance.
Virginia Royals says
Put one teaspoon of baking soda in water and stir, then drink. Twice a day. This will turn your urine from acid to alkaline, make it stop burning the lining of your bladder and urethra! Sending prayers to you for healing!
WEZ WOS says
Where you able to eat fermented foods while on the GAPS diet? Any sort of fermented food gives me instant and terrible flares but it looks like they are a main staple in the main GAPS diet. Any tips?
Megan Stevens says
Hi, as per Dr. Natasha, start slow with probiotics and stop them if they cause a flare. When you introduce them go very slowly. This can mean as little as a drop of sauerkraut juice. You can also try probiotics like Prescipt Assist (http://amzn.to/2tBUgTT) or Sacc. Boul. (http://amzn.to/2tBD3Kw), which can be gentler for some. They are the two I started with, while also eating very small amounts of sauerkraut and increasing very gradually over time.
WEZ WOS says
Hi ..!I am so glad I found you and can tell you about my simtoms .I live in Albania in Europe and I hope you can help me .Doctors in my country don’t even know what IC is.They just say eat healthy and the pain will go away.It sounds so ridiculuos to me.I have had 3-4 urinary infections one year ago and now there is no infection only simtoms.My doctor said I should have fosfomicine for 6 months .1 sachet in 10 days..But after two months I started to feel extremely fatigue.It made me feel better but the simtoms never dissapeared.I am so hopeless ..Please tell me what can I do.I am only 22 years old and eveything is so bad…Waiting forward for answers..Yours faithfully Xheni
Megan Stevens says
Hi Xheni, this post outlines the steps I took, that can also be taken by someone not living in the US. You can contact Dr. Zeff. He does mail the food intolerance evaluation internationally. 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. You can start the GAPS Diet.
Thank you very much ..I also wanted to ask about something else ..Do you or anyone else who has IC feel fatigue ?? Because I have been experiencing extremely fatigue simptoms …Thank you .❤
Megan Stevens says
Yes, this is common for anyone with IC or leaky gut, because the HPA axis is affected and often the thyroid, too. Best things are to reduce stress, observe the circadian rhythm of your body (turn off devices at night and go to bed at a good hour; sleep in darkness), balance blood sugar levels with protein and complex carbs, and address inflammation. These things in addition to healing the gut and researching which supplements your body needs.
Virginia Royals says
Can you find baking soda there? Put one teaspoon in water and stir, then drink. Twice a day. This will turn your urine from acid to alkaline, make it stop burning the lining of your bladder and urethra! Sending prayers to you for healing!
Mikaila Richens says
I have been having IC symptoms for 2 and a half months now. Never had issues before that but it came all the sudden and it was HORRIBLE! I was left in absolutely excruciating pain after 4 rounds of antibiotics that I was given to treat the “uti” that I had. I was diagnosed with IC 2 weeks ago. I’ve been on the gaps intro diet for a week now. How long did it take for you on the GAPS intro before you had major symptom relief? I’ve been trying to keep my spirits up but I just feel like I’ll never feel normal again. I was normal just over two months ago and now I am chronically ill and in pain all the time. Did the symptoms all ease at once? Was it a gradual thing? How long did it take for you? I don’t care what I have to do, I just want to heal. Thank you for your posts!! It gave me some sort of idea of where to start as I was so lost before.
Megan Stevens says
Hi Mikaila, I’m glad the posts are helpful! You’re welcome. I was on the GAPS Diet for years, just basic gut healing that was also benefiting my urethra and bladder. When I went fruit-free, due to the food intol. eval. that I mention above, the healing was immediate. But the reverse process occurs with some of my clients: they get the food intol. eval. from Dr. Zeff, eliminate that food group, and then must do GAPS for a couple of years. So, either way, both pieces are likely needed: heal the gut through a healing diet AND find out one’s food intolerance, so that food isn’t standing in the way of complete wellness. Blessings to you in your process!!
Virginia Royals says
I had to respond to you when I read this! I went through years of pain with many doctors giving me antibiotics that caused more pain. I found this book in the library by what I believe is divine intervention….(See ad from Amazon below!) Try these two things. For immediate relief, take one teaspoon of baking soda, stir into water and drink it. This will turn your acidic urine to alkaline or non acidic urine. Then it won’t burn the lining of your bladder and urethra! You will have relief right away! Then, go to a Doctor and get an Elmiron prescription. This turned my life around. I was able to go back to work. Sending you prayers! Read the book below!
“You Don’t Have to Live With Cystitis. Dr. Larrian Gillispie, a female uro-gynecologist widely recognized in the scientific and medical community and one of the few doctors with expertise in the area of pelvic pain, has shown that women can break out of the vicious cycle of cystitis. From the outset, You Don’t Have to Live With Cystitis has helped millions of women.”
Xenia Danilova says
Dear Megan, thank you for your blog and your committment. I would like to share my story with you and ask for your recommendation. I have a constant pain in the urethra and bladder, often obstipation and vulvodynia. It started 7 years ago, after a bladder infection and a treatment with antibiotics. I have done a lot of treatments (neural therapy, osteopathy, accupuncture, ayurveda, yoga). But nothing seemed to help. During my pregnancy and nursing time I felt better indeed. My current urologist advised me to treat my gut. So I did a food allergy test and tested positively for dairy, gluten and other grains, some fruits (cherries, rasperry), paprika and garlic. She also identified that my histamine values are much too high. So my treatment is to eliminate all histamine, grains, dairy and fruits and veggies that I tested positively. Furthermore, she prescribed me to take Symbiolact and Symbioflor (live bacteria) and to take tapioca flour. Frankly speaking I do not feel much better. I am allowed to eat some fruits but I do not feel well afterwards. Also the only grains I am allowed to eat are millet, amaranth and corn but millet and amaranth have a lot of oxalate, which is also not good for IC. I read a blog by Dean Bill and his recommendation is not the same as what the allergy test said, so I am quite lost and do not know what to eat and what not. I read about GAPS diet and found it interesting. But I am working a lot, have a child and want to get pregnant again. Dear Megan, I need your guidance, what would you suggest to me in my situation?
We were searching about Interstitial cystitis and we found PeaPlex from RS4supplements.com. I ordered mine through rs4supplements.com. I am using it for quite a while now and it has given me a lot of relieve.
Betty Yeung says
Dear Megan, thank for sharing your story with us! I have IC since several years ago, and doesn’t want to take any of the western medicines! I am now waiting for the kit from Dr. Zeff for the evaluation. I have the stomach problem too! I am now taking one of the Young Living’s 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. I am now wondering if I can continue to take it or not! As you said that 50% of us is intolerance with fruits! Please advise.
Megan Stevens says
Hi Betty, if you desire to eliminate fruit completely while you await the results from Dr. Zeff then it is ideal to eliminate a product with lemon and lime. But you can also wait to get your results back; it’s a personal choice. Glad to hear you’ll have those results back soon. 🙂
Jessica Nott says
What is the name of the test Dr. Zeff used?
Megan Stevens says
It’s called a Food Intolerance Evaluation: http://www.songofhealth.com/carrollhistory.html
Barbara Wright says
Hi Megan. What are symptoms that one might be intolerant or that a certain food could be causing a flare up? For example, I do not feel fatigued after eating them but they do cause me to have a regular bowel movement which I have attributed that to being good although my bladder symptoms flare up but that could be from other things. I just read this today and happen to live in the Pacific Northwest just north of Bellingham and yes symptoms much worse in the colder winter months. I will begin the GAPS diet already eat a restricted diet so it will not be difficult for me and do the test you speak of. If Dr. Zeff is local to me I see he has a 360 area code, am I able to go in in person? Thanks!
Megan Stevens says
Hi Barbara, he’s in Vancouver, WA. Regarding symptoms, they vary SO much person to person, partially based on what organs are each person’s “weakest links.” So for my daughter, her food intolerance affects her lungs and adrenal glands. For me, my bladder was affected, but multiple energy systems were also affected, including my adrenal glands. My extreme fatigue after eating fruit is not a common symptom. It was unique to my body and my low-functioning organs at the time when my health was at its worst. I’m so glad you’ll be starting the GAPS diet. Many blessings in your process!!
Barbara Wright says
Sarah French says
Thank you for your post.
I was diagnosed with IC one year ago and switched to a vegan diet and more recently raw vegan. My stomach is swollen and I’ve developed too much wind!!
I would like to try the GAPs diet but do not know where to start. Also do you know where I could have the food intolerance test done in England? I’m in Enfield .
Megan Stevens says
Hi Sarah, thanks for your comment. Dr. Zeff works with folks internationally to do the food intolerance evaluation. I’ve had multiple clients do it through the mail with him. I do consultations (via Skype or Facetime) if you need support starting GAPS; see my consulting tab ^^ at the very top of the page; or go to gapsdiet.com for lots of info to get you started. Many blessings!!
Sarah French says
Thanks Meghan. I will email Dr Zeff today. I have found a local GAPS practitioner and have booked an appointment for support
Megan Stevens says
Yay, Sarah, sounds perfect!! Blessings in your healing process!
Sarah French says
Hi, Meghan, sorry to ask another question. The probiotic that you took, was it recommend to you? I was searching on Amazon to buy one but there are so many out there with such varying reviews. Could you let me know which one would be good to buy.
Also did you take the fermented cod liver oil and digestive enzyme ?
Megan Stevens says
Yes, both of those are recommended by countless naturopathic and functional medical doctors. Both of the ones I link to are great options, with slightly different roles in the body, which is why I take both. You can alternate them to save money.
I take virgin cod liver oil (http://bit.ly/2E2fSL7) in capsule form and digestive bitters or Betaine HCl with Pepsin, instead of digestive enzymes (http://amzn.to/2ELTRSh and http://amzn.to/2E5BYwB).
No problem, happy to help!
Sarah French says
Thank you Meghan
Sarah French says
Unfortunately I was not able to make my appointment with the Gaps specialist this week due to kids things being on at half term. Will I be able to book an appointment Skype with you.
Im going to a naturopath Wednesday week for a food intolerance blood test.
Melissa Marie says
This is awesome. THANK YOU so much for getting the word out there that IC IS NOT INCURABLE! When I had IC, it felt so hopeless because every forum seemed to be women talking about how there was no cure, even calling people liars who were healing with natural remedies. I tried to do gaps, but found I could not tolerate even gaps food until I dealt with my allergies. I could not tolerate gelatin in the broth. I also healed my IC. It took 8 years. I have been healed for 4 1/2 years now. I went to school and got my degree in coaching psychology after.
I can eat whatever I want but paleo works best with my gut and makes me feel the best. I found I was allergic to HUNDREDS of items due to the leaky gut.. even WATER, COTTON (yes my undies) and plastic were causing my pain. It was a combo of diet, NAET allergy treatments that I did on myself and at the doctor, and Ozone gas in my bladder that healed me. I am now a wellness coach and help others get well to. I am thankful for women like you who share healing IS possible. YOU Are the reason I kept going and never gave up the hope that I could heal to.
From the bottom of my heart I thank you for sites like this. My new book called “Healing through the pain, how I recovered from Interstitial Cystitis” is in editing right now:)
Megan Stevens says
How exciting, Melissa!! Congratulations on your new book!! I’ll be interested to read more about the ozone gas. I, too, benefited from NAET at one point; it’s such a journey and a process. Thanks for all your kind words. Many blessings and continued wellness to you!! 🙂
Tita Sisa says
Melissa, I have so many of the exact symptoms you described including the allergies. May I reach out to you with more questions and when will your book be ready for purchase.
I am currently seeing a naturopathic doctor to try and heal IC naturally. So far, I am trying an anti inflammatory diet as well as some supplements. 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.
Chelsea Ramsey says
When did your IC start? Were you able to eat fruit before you developed IC, or did you always have problems with eating fruit? My IC was caused by a medication called Geodon. I took it for one week and it ruined my life. I had never had any bladder or digestive issues before that. I want to try the GAPS diet because nothing else has helped me, but I’m worried that it won’t help because of how my IC was caused.
Laurie Van Allen Eckes says
I’ve had IC for at least 15 years. For me the journey at first was debilitating. I was fortunate enough to get a diagnosis and found a book. Anything fermented especially vinegar, pork, turkey, Choclate is a killler for me. Fruit also. I Spicy foods such as chili powder, cayenne etc……. I was finally given the prescription of Elmiron. Saved my life! Taking this I eventually got where I could eat about anything in moderation. Now I went on the Weight Watchers eating program for weight loss. Fruit is a big part of their plan. Well it was the straw that broke the camels back. I am again waiting for the Elmiron to take full effect. I had dropped my dose. The journey with IC is different for everyone. I had food allergy tests and it doesn’t seem to come in to play for me……not sure. My adult daughter now has the same issue.
Melissa, have you heard of collagen helping IC sufferers?
Christy Hollister says
Where did you read about the collagen helping Melissa? I was thinking that same thing the other day that it may coat the bladder.
I am also interested to see if collagen has helped IC sufferers? Was it the supplements or the powder
I use Perfect Supplements’ bulk collagen powder: http://bit.ly/2rMvwHf
Tim Whitney says
I don’t believe 90% of the people with IC are women. I’m a man and I have it. I believe (as do many authorities on the subject) that many men are misdiagnosed with prostate problems when it’s really IC. It might even be closer to 50/50 but no one really knows. Also, I think men tend more to “suck it up” and not see a doctor when they have problems “down there”. I’m open about my IC and talk with a lot of men about it. You’d be surprised how many men go the bathroom 20 to 30 times a day and 3 or 4 times at night, have painful urination, hesitation, etc. and think it’s normal.
What are your thoughts on PFD, trigger points, etc. (physical therapy in general) for urinary problems?
Megan Stevens says
Hi Tim, thanks for your thoughts and insights! I’m not opposed to physical therapy for IC, but I don’t have any personal experience with it. I’m amazed how many health issues come back to digestion and our diets. That’s where I found healing, and that’s where I hear the most testimonies of healing from IC. But there are some other alternative methods that I occasionally hear about. Whatever works, amen!
Kimberly Medina says
Megan!! Thank you so much for this article! I live in Brookings, Oregon which is about 6 hours away from Dr Zeff and decided to at least give him a call and I ended up making a appointment with him and it was the decision I’ve ever made! For once I left a doctors office feeling hopeful and happy, instead of in tears & feeling disappointed. He spend 2 hours trying to find the root cause of my IC and he was able to figure it out! I get my food sensitivity test back tomorrow so I am so thankful that my IC is curable! After tons of doctors told me that IC is not curable and that I had to deal with this forever it made me so depressed and just hopeless and honestly made me suicidal sometimes. But my mom prayed & prayed that i would find a doctor that would tell me that I was going to get better & that I wasn’t going to have IC forever & I finally found him because of this article! Thank you thank you thank you!!! You sharing this saved my life. ❤️
Megan Stevens says
It is an understatement to say, I am SO happy for you, Kimberly!! Filled with thankfulness for you! Thank you for sharing. SO much love and good health to you! Praise God!…and yay for a mama’s good prayers and for Dr. Zeff! xoxo
Sarah French says
Did you take both probiotics (prescript assist and sacc boul at the same time? I look forward to arranging my consultation with you Sarah
Megan Stevens says
Yes, when my situation was acute, I did, because they have different roles.
Sarah French says
Hi, is it ok if I can book a consultation with you? I have sent an email on the main page. Thanks. Sarah
Megan Chambers says
Oh my goodness…I have the exact same intolerances as you!! No fruit but maybe some melon, tomato, and avocado. No coconut for me or olives or nutmeg. I thought I was going crazy but your article shed so much light and helped me SO much. Thank you for writing it! I will definitely be investing in your cookbook. Thanks again, dear.
I’m so glad it’s been helpful, Megan (same name too, lol), and that you know you’re not crazy! 😉 Much love and best to you on your healing journey!!
Christy Hollister says
I never thought I would be reading about IC again after being symtom free for 18 years, maybe 1x a year I would have a very mild flare that would last about 2 days and be totally gone. I have been doing so well that I actually thought I was healed. I eat a very clean diet, exercise hard 5x a week and take an array of very good supps. as I research and have studied for decades to find out the best to take especially at the age of 69. I am in total shock, frustration and low emotionally since this very bad flare happened 3 weeks ago for no apparent reason. I have been able with no problem at all the past 4-1/2 years to have sex with my fiance with no pain at all during or afterwards. I am at a loss as to what to do to get this flare to leave and let me get back to my healthy and happy life. BTW I have taken very good Vitamin C 1000mg. for many, many years along with many other good supps.! I have eaten almost everything that would cause a flare up the past 18 years with no reaction, I even drink wine once a week with absolutely no problem…I just cannot figure out what is going on all of a sudden out of the blue!
Marie G. says
The same thing has happened to me! Have you healed again since writing this?
Meoshie Batiste says
I was just diagnosed with IC and I am not sure what to do. I have just started the instillation process, but I don’t know if it’s going to help. This has been one of the worst experiences of my life.
So sorry for you!! Yes, it almost breaks many of us. Keep figuring it out. So many of us have found relief through dietary changes. Blessings!
So I am wondering you say you are healed as in your gut healed your bladder healed. Can you have your intolerances now ? Or are you forever not able to eat fruit?
Hi Nicole, I am forever unable to eat my food intolerance. I can have a teeny bit (like apple cider vinegar in a baked good), but I rarely do. Definitely it’s all about finding new favorites! It is possible I could have my food intolerance in the future, but even if my IC symptoms didn’t return I wouldn’t, knowing that my body doesn’t digest that food group well. That piece of information is bigger than IC and its symptoms. New sickness could be caused. Once we know our food intolerance, if we truly want overall wellness, we are wise to keep that food group out of our diets for the long term health benefits.
so you don’t eat any fruit ever again then?
What do you use for an oil if you can’t do olive or coconut? I just had my food evaluation done with Dr. Zeff and it take came back saying I, too, can’t have fruit. Also, you do have to avoid everything containing citric acid? What about white flour? Thank you! I’m feeling so hopeful that I might finally have a solution and get better!
Thank you so much for sharing everything you have learned to help the rest of us! My question is about your IC diagnosis if you are willing to share. How was your doctor positively, 100% able to tell you that you had IC? I have seen three doctors and not one of them has been able to confidently tell me yes or no.
Hi Bonnie, happy to help. 🙂 It’s been years since I had that test, but I went to a medical specialist in IC. She put some agitating fluid up my urethra and had me verbally respond to when I felt pain. That coupled with my symptoms was how she diagnosed me. I did not have a cystoscopy done. But she did hydrodistend my bladder. The medical world still doesn’t understand the cause of IC, which is why their diagnostic processes vary and continue to evolve. Perhaps the confidence of one’s physician when diagnosing is subjective, based on your test results and their experiences. My nurse and doctor both diagnosed me with utter confidence. And Elmiron worked to remove my symptoms. Thankfully a natural approach to healing IC is overall beneficial to the body. Certain dietary changes, like knowing one’s food intolerance, and moves toward healing the gut like removing grains, sugar, fruit and lectins seem to be great places to start even without a certain diagnosis of IC, in my opinion. 😉 Sometimes just changing our outlook and diet allows the body to give us new clues. Best wishes as you figure it out further!!
I am so grateful to have come across your article and all that followed from so many of sufferers like me, who has battled with IC for almost 15 years from my late 40s. I truly believe now that diet is primarily the main culprit. For decades until 4 yrs ago I would gulp down black coffee and caffeinated cola all day along to stay alert at work since I have suffered bad insomnia night after night. Sweets especially chocolates and baked goods were my main staples even after I was diagnosed with IC because my urologist was not too sure about diet being the first defense. I had gone thru Dsmo so painfully every few months for several years and surgery had been entertained often which caused me more anxiety. The past couple of years I seriously and religiously deviated from whole grains and white flour products, opted for organic as much as possible, cut down red meat, citrus fruits and all caffeinated drinks. The past year my main drink is Dandelion Root tea which helps my IBS so well that for the past few months, my urethra pains and painful urges have gone down about 97% and I do still go to pee every few minutes at times but other times I can forego for two to three hrs. I also watch to keep my weight down and do daily Keigel workouts and some. This is the best remission I have had in years. I do take elmiron now but only a couple of times per day if I remember although I intend to drop it ‘cuz I think I get itchy on my skin few times and still sleepless. I wonder if IBS is closely associated with IC, like which comes first-the egg or the chicken ?
Above all, meditation and prayer always inspire hope and self-healing. Thank you for letting me share this.
Are you sensitive to vinegars, too? I was unable to eat fruit for years because I would lose my voice and respiratory distress. Now it is s bladder killer. How do I find out which spices cause “fruit reactions”. Coconut drives me crazy. Thank you for this article!
I just came across this article and want to thank you for have written it. I have just been diagnosed with this painful disease. I was just in the hospital 2 days ago with severe pain. I’m starting to read up on this since recently been diagnosed.
The bladder spasms only started after I got a bladders sling procedure done. 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.
So, my question is how do you find out what foods your body doesn’t tolerate? How do you go about that?
I will need to figure out what is best for me but would love to heal myself just as you have. I cannot imagine living with this pain. I’m currently on urogesic blue pills and pain killers but none of that helped the spasms I felt on Friday. Not even the morphine they treated me with at the ER. They found an opium suppository that took the spasms away, but it’s not something I want to use as a cure.
I am pretty healthy. I own two gyms so exercise is a must and this doesn’t allow me to do any kind of exercise.
I need to find me again. I need to be strong for me, my family, my clients and my staff.
I think I m the one to be blamed for my IC. Excessive drinking of water and coffee and tea for years. I don t have diagnose but the symptoms match. Just left the toilet and have to go again in 15 minutes. Pain and pressure feelings makes that I want to go to the toilet. Not all the time like that. I have also had pain occasionally when having sex. No UTIs, have been checked twice. I have uterine fibroids, myomas, but according doctor fibromas dont make me to urinate frequently.
I dont want drugs, becouse of side effects. I have also acid reflux, and I don t take drugs. I have lots of gut issues: gas, constipation, diarrhea, pain, cramps, puffyness, fluid retention (up to 30 kg s!) etc.
I have discovered that milk and dairy are the ones to trigger IC and acid reflux symptoms, and so is coffee, maybe all caffeine including tea. I feel better when drinking cranberry juice (without sugar and no artificial things) and chamomile infusion is ok, and pure water too. I need also avoid karragen and citric acid (made of aspergillus mold!). Maybe I need to start paleo. I have been gluten free and mostly sugarfree for 4 years now. Now I need to skip milk and dairy completely. New year, New tricks 🙂
By the way I am 41 years old, and this started when I was about 38. But you don t have to be senior age to have IC? And sorry for my english, I m from Finland.
Cathy Weil says
When sugar is your intolerance, according to the Carroll Food Intolerance test, can yo eat coconut sugar?
Hi Cathy, yes! Those with fruit as their food intolerance can not have coconut anything. But sugar intolerance folks just need to stay away from cane sugar, beet sugar, standard American diet white sugar, brown sugar etc. The Paleo sweeteners are all safe and fine. Sugar intolerance does mean no kombucha though. There are a few hidden foods like that, but mostly it’s an easy food intolerance to have.
Paleo without coffee has helped me completely /almost completely! I want to stay paleo forever, without coffee or caffeine. It s also possible that I have overactive bladder without IC, but I think I have IC. My symptoms have been often much worse before my mens /menstrual flow. I have still been using organic olive oli for cooking beef, what if I have fruit intolerance, is olive oil forbidden then? Also eating figs, dried, histamine in them. I don t know yet if I have fruit intolerance. However I can t eat milk/dairy, so I won t be able to cook with butter. Only choice will be cook in the oven without any butter, oil etc. But that s OK for me. I also like raw fish (deep freezed first) like salmon, but is there histamine in salmon? or in pollock? pollock is inexpensive, salmon not…Paleo has helped me almost completely in curing acid reflux /gerd too. I also think that vagus nerve, nervous system, has something to do with reflux and IC? I d like to be on vegetable diet, I like the taste, but that doesn t seem possible for me…
There has been great help for me keeping the food diary, I write everything there also vitamins etc.
And I want to thank you Megan and other persons here. Your writings made me try paleo and gave me hope:) I wish everything good for you all. Never give up.
I also need to avoid salt (like mineral salt) becouse of IC and reflux. I used to add lots of salt to my food. And I now realize that cranberry juice is not good for me /IC after all. Onion is also bad for me, and industrial /fast food.
Also have been thinking candidiasis / yeast. I first had symptoms in urethra?!! At least it felt like that.
It seems to me that I don t have IC at all, it was never diagnosed. I visited my gyn and he said that one of my myomas/uterine fibroids is putting pressure straight to my bladder, so that might cause all the symptoms (need to go frequently to toilet). I luckily don t miss coffee anymore, that s bad for almost anyone. Coffee can make cysts to ovaries and breast…
Alexandra Schutt says
I was diagnosed with IC 4 years a go and almost had to go on disability due to ther constant pain. I went vegan 2.5 years a go and two weeks in i felt like a new woman. I no longer have the urge to pee every 5 seconds even when i have lemon (my trigger). I do not feel bloated anymore and I’m actually able to work out again.
This is great Alexandra! I would just caution you about a long term vegan diet, as we saw the damage this can cause in many of our cafe customers. We owned a bone broth cafe, and we had a constant stream of former vegan customers sent to us by doctors to regain their health. They suffered from spinal damage, gut damage, major hormone imbalances, B-vitamin and iron shortages and more. Short term, the vegan diet offers a wonderful cleanse for many, but long term we are omnivores. You could consider a reintroduction diet that moves very slowly: Gradually challenge foods you think may be gentle, like oily fresh water wild seafood, egg yolks, pasture-raised, A2 ghee made from Kerrygold butter etc. You could also contact Dr. Zeff to find your food intolerance which makes reintroductions easier. Thanks for sharing your success!
Laia Poch says
i have postcoital cystitis and e.coli. any tips?
Hello Megan. Thank you for your post on IC and for the hope you are giving to others. I have IC, but I also get extremely painful bladder spasms, especially at night. Sleeping is difficult. Can you recommend anything for bladder spasms? Thank you very much!
Hi Deborah, I’m not in a position to recommend, but I have given several leads within this article that I suggest as a friend to a friend. They are the routes that allowed me to get well, also working with my doctor: a wellness diet, removing fruit and an elimination diet, as well as getting your food intolerance evaluation done. Also, are you already taking a magnesium supplement? This would be something to ask your ND or functional doctor about. Mg is a wonderful remedy for spasms and sleep issues. Best wishes!
Thank you for responding so quickly. I will reread the article very carefully again and also the posts from others and your reply’s. I just started working with a new integrative doctor. I will ask her about doing a food intolerance test for me. I do take magnesium, quite alot. But, the spasms are quite severe. I keep a food diary that has helped. I also have a vaginal yeast infection that is very stubborn, so I am on the candida diet currently. The food diary has at least helped me see some of my trigger foods. My hormones are quite a mess as well, especially my cortisol from no sleep. It can be all so overwhelming where to start. So much to learn!
Yes, so true Deborah! I’m glad you have a good new doctor. To clarify, the food intolerance evaluation is not a test and most doctors have not been trained to do it. You’ll need to reach out to either Dr. Zeff or another practitioner who’s been trained. This is not a food sensitivity test. You’ll see more as you reread the article I believe. Best wishes!
Karen Lemburg says
Hi Megan, thank you for putting your story out here and giving hope. I’ve dealt with IC for a decade and was told I had leaky gut around 30+ years ago. I’ve gone the Elmiron route, and yes, way too expensive. I’m gluten intolerant and not eating dairy. Sometimes I wonder what’s left. I have had the blood test done for foods, and the saliva test. What kind of tests does Dr. Zeff do? I’m back to the basics on the IC approved food list.
Hi Karen, thanks for your comment and question. Dr. Zeff’s is not a test but a food intolerance evaluation. He does it through the mail. You can call his number, listed above, for more info. It’s based on the work of Dr. Otis Carroll, and you can read more about it here too: https://eatbeautiful.net/2016/07/24/difference-food-allergy-intolerance-food-sensitivity/ Dr. Zeff suggests all with IC start by giving up all fruit to see if there is improvement. Most need a grain-free, sugar-free diet as well, in my opinion. Feel free to email if you would like to consult; otherwise, feel free to contact Dr. Zeff. xo and best wishes.
Megan thank-you for your article. Would you be able to share your “fruit”list? As there are many conflicting lists, especially when it comes to herbs and spices. Thanks in advance.
Hi Angela, I don’t have a master list written down, but YES, great idea! You’re right that it’s needed. I’ll publish a post in the next couple of days for you and others. I’ll come back to this comment and link to it! 🙂
Thank-you so much you are so kind. This is such a painful disorder, any info is so helpful!
Okay Angela! The post just published. Here it is: https://eatbeautiful.net/2019/02/21/master-fruit-list-food-intolerance-elimination-diet-leaky-gut-interstitial-cystitis/ Blessings!!
Thank you so much for this post! I have just started seeing a ND for what she thinks is SIBO and possibly Leaky Gut among other things. I also have IC and now have hope that my ND can help me. I am willing to do whatever it takes to feel good again. I know it will be hard but I just want to feel well again.
I am interested in NAC for IC pain. I know it can possibly help the GAG bladder lining. How long did it take for you to notice a change? I am interested in the one you took it says its the 900mg 1 capsule daily. Did you take 1 capsule daily or increased the dosage? There is another one that is 500mg 1 capsule 3 times daily. I’m not sure what to take without having to much NAC because of the side effects.
Hi Danielle, I took the 900 mg – 1 capsule each a.m., and I think it’s best to take for 3 months only at a time. Combined with a gut-healing protocol and knowing one’s food intolerance/eliminating fruit to start. My change was faster because I’d already been on a gut healing diet for years. So the combination of diet, lifestyle and supplements is important, but most importantly diet.
Hi! I have IC and Crohn’s disease and have been on gaps intro for last 3 months. How long did you do stage 2 for? Did you find most relief during this stage?
Hi Arielle, I stayed on Stage 2 for several months. Yes, I found tremendous healing at that stage. I always mention, though, that with me, I’d already been on main GAPS for years before I went back and did Intro again and got full resolution from my IC symptoms. One additional thing to consider now, though, is the new Vitamin A Detox diet. It’s transforming my body and doing deeper healing. I highly recommend you considering it; see if it resonates. It’s one of those diets that takes a few weeks to wrap your head around, because we’ve all been so steeped in the value of Vitamin A. But toxicity is well documented, and I just keep getting deeper healing as my body detoxes it. Here’s my post on the topic if you want to consider it: https://eatbeautiful.net/2019/06/23/vitamin-a-detox-diet-free-printable-food-lists-avoid-eat-toxicity/ I now have several clients, a few with IC, doing the diet as well. Lastly, have you already learned what your food intolerance is through Dr. Zeff? That piece of information was key for me, as I wrote. If your FI isn’t fruit, it would be helpful (by a lot) to know what it is. Best wishes! I’m rooting for you!
Hi thank you for responding! I havent looked into food intolerances yet with Dr Zeff. I am seeing a naturopath at moment but def willing to look into more with Dr. Zeff. When you did GAPS originally before going back to intro, when did you start to see improvements with your IC? Weeks? Months? Years? Thanks!
Hi Arielle, I can’t remember the details except that the IC symptoms cleared quickly when I went on Intro the second time.
Jennifer St. John says
Hi I am Jennifer: I came across this website in Dec. 2017. When I got IC. I started the GAPS diet shortly after reading this post. Today I am in remission. I still live a GAPS lifestyle and feel great. I have also been inspired to write my own book on my autoimmune healing journey. You can heal from IC. In fact you can heal from any autoimmune condition I believe by healing your gut. Thank you
Hi Jennifer, I am so happy for you! Thank you for sharing your experience! Best to you!!
Jorge Goncalves says
Megan, what you describe – fruit intolerance that includes olive oil and coconut oil – sounds a lot like salicylate intolerance, which is closely related to IC. Have you looked into that?
Hi Jorge, thanks for your observation! I personally do not have a salicylate sensitivity (thankfully); is that what you mean? I have looked into it, yes. Or do you mean something else as far as the correlation between salicylates, fruit and IC? A fruit intolerance is separate and different (it’s a genetic inability to digest an entire food group) from a salicylate sensitivity (where some fruits rank low and some fruits rank high).
Jorge Goncalves says
Hi, Megan, thanks for the reply. 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. Anyway, it was just an observation 🙂
Hi Jorge, thanks, yeah! 🙂 Coconut and olive are both fruits, and I don’t react to any salicylates. Removing all fruits from my diet was the key, without a doubt. That one insight allowed me to get well.
I read your post probably a year ago. I am now 16 months into IC, or some type of similar bladder issue. I am working with a FM doctor (and spending 1000s!), but she had a tragedy in her family and even though she is working, I feel she is not “all there” yet. I have been on an anti-candida diet for 3 months, and I think I made some progress, but not enough. Even though I’d put all the money I have on my guess that this is mostly hormonal for me, I want to try EVERYTHING I possibly can to heal completely. So, my husband and I have bought all the ingredients, pots, etc. to begin the GAPS intro diet this coming Monday. I have just a couple of questions. If you have time, I’d really love to hear your thoughts.
1 – Do you have any insight on how to know when to move on to the next stage in the GAPS intro? I know everyone is different. But I guess I’m wondering if I try to go by my bladder symptoms?? My tummy, even though I have leaky gut, is not really symptomatic. But I’m afraid if I try to wait until I have no bladder symptoms I might be on stage one for too long.
2 – Does your doctor still offer the food intolerance test? I looked at the website and didn’t see it listed anywhere. I sent a message, but have not heard back.
Thank you in advance!
Hi Elizabeth! Good for you and best wishes in your process. It’s hard to know how long stage 1 will take until you’ve started it. I wouldn’t get ahead of yourself. Yes, I would look for an improvement in your bladder symptoms. If you’re not seeing enough progress, I’d consider doing the low vitamin A version of GAPS Intro. This frees vitamin A from your liver so can even worsen bladder symptoms temporarily, but it’s good to have a big picture idea of some causes and options. Re question 2, did you call Dr. Zeff’s office? Call. Ask the receptionist for the Food Intolerance Eval. kit in the mail. Blessings!
Nicole Goeking says
When you say finding your food intolerances. Is this testing for your IgG and IgA antibodies?
Hi Nicole, it isn’t. You can read more about food intolerances here: https://eatbeautiful.net/difference-food-allergy-intolerance-food-sensitivity/
I’m so happy I found your article! I will be calling his office Tuesday! I have a question for you though, are you able to have coffee or drink wine once in awhile? I’m really missing the coffee (I only drank one cup a day)
Hi Candace, yes, I can now have coffee without having any IC issues. I don’t personally drink wine, because it’s fruit-based, and I don’t ever eat fruit because it’s my food intolerance. If there was a rhubarb wine or other non-fruit wine, I’m sure it would not bother me in regard to IC. Best wishes, and I’m glad you’re getting started with the evaluation! 🙂
That makes me so happy ? Thank you so much for the reply and for your wealth of knowledge on this.
Hello, from another PNW resident! Thank you so much for writing this article!!! I’ve struggled with IC for the last 3 years, only being diagnosed in July. I tried to “bandage” it with meds/antihistamines. I don’t want to live like that forever. I have tried so many elimination diets, but NEVER considered fruit. I’ve been in the middle of a flare up for several days and I am having some aha moments. Dr. Zeff’s website was incredibly helpful too! I finally have some hope! Thank you so much!
I’m so glad, Kelsie! I hope this is the right path for you! Best wishes for full healing!! 🙂
Hi, thank you for this. May I ask if your IC is still in remission? Have you had any flares?
I’m 32 and diagnosed 6 yrs ago. I went into remission while pregnant and for 2 yrs after. Somehow a flare began 2 months ago and lasted 2 wks, went away for 1 month and has been back again for a few days.
What would be your top tips for me to start? I’m needing a change because I can’t live like this while caring for my toddler (urgency and frequency) I am afraid to begin a full diet diet as I am still breastfeeding and we are ttc. Thank you for reading.
Hi I have been in IC Flare for about 2 weeks now. I been trying elimination diet, and really watching what I eat. Been taking 2 extra strength Tylenol tablets to help with the pain. I symptoms for IC is throbbing,burning and pressure, not so much bathroom trips. Also have GERD on medication for that. I was diagnosis in 2000 With IC. Started on Elmiron for awhile with low dose of elmitryline. End up with stomach issue from Elmiron , not on it anymore. Like to go as natural as I can. Anyway through the years with diet changes and other things I went into remissions. I try to follow the IC diet, I am gluten free for about 8 yrs now, the only fruit I eat is gala apples, pears, and bananas. I do put coconut milk on my porridge in the morning. I love eat small meals throughout the day, boiled eggs, l/f Mozarrela cheese, salad with carrot,zucchini, lettuce cucumber with some dried chives, dill weed and rosemary, paremansean cheese and 2tsp. Of olive oil, plus small piece of meat. Later I have chamomile tea with plain yogurt and maybe a tsp of our maple syrup. I also take a probiotic tablet, 500mg of magnesium capsule, B12(1200mg). And vitamin D3 3000mg a day. 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.
I try to walk away everyday and some exercise. I am 68 years old, Pastor’s wife and I am in pretty good condition. This Dr Zeff you mention where is he located and do you have other info on him. I have done a few allergy test through the lab with blood work and paid for myself. Came back negative. I also take reactin every night because I am allergic to dust and mites. Really want to find out what is making me flare. I have had other flares off and on, but this one seems to be lasted longer. When I am not in a flare sometimes I may eat something like chocolate and get away with it. It seems I have more pain early in the morning getting up. I really enjoyed your story and trying to help people. I am praying to the Lord for a miracle, He is the one who gives me strenth each day to keep going.
Thank you for any info you could past on to me. Take care. Look forward to hearing from you.
Bye for now
Hi Betty, sounds like it’s time for you to give up ALL fruit, and see what happens. Any fruit at all, including cloves, *olive oil, curry, most vinegar, certainly apples and pears, is still fruit. It only takes one bite to cause a flare. I would take that step first.
Kelly Jenkins says
What type of food sensitivity testing do you recommend? I looked on Dr. Z’s site but don’t see it mentioned. I apologize up front if you mentioned it in your article and Ive missed it.
Hi Kelly, Dr. Zeff does a Food Intolerance Evaluation. If you call his office, they’ll set up a short appointment with him for you, and he’ll explain further. This eval reveals which foods your body does not digest well genetically.
I am so lost and confused. My daughter has suffered from IIC and pelvic pain for the last three years. Even after a flare goes away she has pelvic pain. It is a nightmare. She also has Hashimoto’s and vitiligo. We have noticed that nightshades cause her problems and she has always been lactose intolerant.
Why is my child so sick? She is such a beautiful soul and it kills me to have her suffer. I pray to Gods to heal her. We have tried so many things without much success. Do you think giving up fruit can get her out of this flare?
does acidic drinks increase risk developing IC? I think coffee is generally irritating to bladder even if one doesn t have IC. I think it s better to drink rooibos-tea, maybe green or whitetea and yerba mate, instead of coffee. Milk causes me acidreflux etc, so it s not good idea to mix milk with coffee in order to make it less acidic. Thanks and have nice end of summer /fall time!
Hi Maria, acidic drinks can indeed exacerbate IC symptoms, but they don’t increase the likelihood of developing IC on their own. There are other contributing factors that are more causal. Thanks for sharing your thoughts and input! Yes, happy summer and fall! 🙂
I m on paleo diet.
Tristan Christophilis says
Hi Megan! I am so glad I found your website. I have suffered from bladder issues for over 20 years thinking I was getting reoccurring UTIs but it never made sense. Long story short, I am now seeing a FM and we are getting to the bottom of this. It must be IC even though she hasn’t told me yet. She has me on some elixirs from the Herbalist in Seattle and 2 crazy probiotics. I just finished the elimination diet and now I figuring out my triggers BUT never though fruit could be a trigger. I have cut dairy and gluten but I flared again even on my elixir and probiotics. It’s fruit! I’ve been making fruit smoothies! One question: I am taking OLE (olive leaf extract) for my non-existent UTIs. Will this now be a no-no?
I need to read more on your website but are you also GF and DF? If so, for your CI or just because they are bad for your health? Thx a million!!
Hi Tristan! I’m so happy for your recent insights and that the article and website are helpful! Olive leaf is fine for those of us with fruit intolerances. If you haven’t seen it yet, this article might be helpful; it’s the Master Fruit List: https://eatbeautiful.net/master-fruit-list-food-intolerance-elimination-diet-leaky-gut-interstitial-cystitis/ Olive leaf is okay because it’s the leaf. My whole website is gluten-free, and many of my recipes are DF, but some are “Primal” or Keto, and include dairy. Personally, right now I do eat butter and occasionally cream, but that’s all for dairy. Re gluten, I am well along in my health journey now and can have a little sourdough or the occasional treat with gluten (my husband and I get croissants at a French bakery once a month). But, those foods did not affect my IC either way… except that I can not have grains + potatoes within 4 hours of each other, or my IC flares the same way it would with fruit. I hope that’s helpful, and blessings with your process and progress!! 🙂
Alex Smart says
Wow, so glad I found this page doing a Google search for “chiropractor fixing urine pain” as I battle intense pain while urinating (in the urethra area, not bladder). No other syptoms, UTI tested negative.
I have a history of problems with fruit, cloves, vinegars, citric acid… so I will remove to see what happens.
Question: If one has a fruit intolerance would they be able to handle coconut oil or ACV applied to the skin?
Also would be interested in what you use for toothpaste and deodorants.
Thanks a bunch! Appreciate your willingness to help others.
Hi Alex, I’m so glad you found the article and that your issues are so similar to mine, so this can be very helpful to you hopefully. Great that you already have seen that all those sources of fruit are triggers. Big clue! 🙂 Re skin, it’s better to avoid, but people may have varying levels of sensitivity. I do avoid fruit based skin products, but if something has a little fruit, like my shampoo, I seem to be okay. For toothpaste, I use Earthpaste, the spearmint one: https://amzn.to/330BVnp For deodorant, I use Life-flo’s magnesium-based roll-on deodorant. Another option that my men prefer is Schmidt’s magnesium and charcoal product. While it does have coconut, it may be less of an issue because of the charcoal, and it works really well: https://amzn.to/3AYuI3A Happy to help! 🙂
Thank you so much for your post. I have been going through IC for 6 years. I have done every treatment possible but never anything related to diet. I eat a lot of fruit and usually feel pressure and burning in the pelvic area afterwards along with bloating and inflammation. How long did it take to notice a difference in symptoms after eliminating fruit? Also can you never eat fruit again?
Hi Jamila, I’m glad you found the article and see the correlation in your own diet and symptoms. I saw results within days, but I had already been on a gut-healing diet for years, so it can take longer for someone who hasn’t. Nonetheless, if you remove that trigger, you should see an improvement. Yes, I don’t plan to eat fruit again. I have tried, and it causes immediate symptoms. Otherwise, I am completely symptom-free.
Sarabeth Matilsky says
Just a quick report. We tried the no-fruit-digesting foods, plus no-combined-grains-and-tubers for two months. In addition, we tried no pork as well, since we’re already doing a gut-healing low-vitamin A diet…
I was very hopeful that certain urinary issues might be positively affected by this, since while none of us have an IC diagnosis, it seems like the issues can be suffered anyway. Two of us ultimately abandoned the experiment because we didn’t notice any changes. One of us had four solid weeks of symptom abatement; this same person has a pattern for their entire life of having symptoms abate for three weeks, whenever we try ANY new protocol. So when this time we made it to week four, I started getting very excited! However, directly after the fourth week of improvement, this person’s symptoms went right back to baseline as always, very disappointingly. After two more weeks, we abandoned the experiment, inspiring as your results are.
But: due to all the experimentation, we discovered that the baby is currently intolerant of pork. Within two days of taking pork out of his diet, his terrible, blistering “diaper rash” completely disappeared, only to return immediately a few weeks later when I tried reintroduction. He is happily pork-free now.
My question: how do you personally reassure yourself that you won’t be developing new deficiencies on a limited diet? 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…
Thank you for sharing your experiences and ideas with us all!
Hi Sarabeth, good to hear updates and that the pork omission has been so noticeably helpful. I believe beef and pasture-raised red meats to have most but not all of the nutrition we need. The carnivore diet is short, though, on B1, B2 and potassium. As well as fiber. Limited diets aren’t necessarily bad, depending on what the limitations are. Right now, I feel our diet is nutrient dense; but, it doesn’t need or want kale or sweet potatoes, for examples, to achieve that. We are all thriving better than in past years, very healthy and energetic, which is especially encouraging for me in mid-February. My son has one patch of eczema I haven’t been able to pinpoint for years, so we’ll this week reduce oxalates and a bit more to see if there’s a compound that needs to be isolated for fuller healing. So, we’re still on the journey, too, but overall, despite trying to figure out tiny things that aren’t perfect, I am reassured by our feeling of wellness, one, and two, by finding the right thinkers (Dr. Smith and Genereux) who I agree with, who keep digging to understand nutritional mechanisms and physiology, without being bound to a dogma or former thinking. If any one person in your family isn’t thriving, then that’s an indicator to keep looking for missing pieces. I appreciate your thoughtfulness and intentionality with diet and am happy for all the progress you’ve made!
Hi Megan — I am working with a ND for my Ic and he uses the MRT Leap food sensitivity test for food sensitivities. Can i ask what food allergy/sensitivity test did you take that showed you are unable to eat fruits? Im curious as i may want to ask my ND for that test. Thanks
Hi Rose, not all NDs do the Constitutional Food Intolerance Evaluation, also called the O.G. Carroll (or simply the Carroll) Test. If yours does, great; if not, please see the link in this article to Dr. Zeff’s office who can do it through the mail. (Doctors who do the evaluation are actually trained by Dr. Zeff himself or one other colleague who teaches the method.)
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, can’t 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. Also can thickening of walls be reversed too(Trabeculation). Waiting for your reply at the earliest so that i can start my healing to the utmost level. Btw I found sunrays on bladders soothes it.
Hi Abhishek, it would be good to read this article on a low vitamin A diet as well as contacting Dr. Zeff for your food intolerance evaluation. It’s the diet I’ve done that’s been so helpful: https://eatbeautiful.net/how-i-healed-my-interstitial-cystitis/
I am 20 years old and I have struggled with IC for the past year. I went into urinary retention, had a painful supra pubic catheter that ruined my daily life completely, spent more time in the hospital than at home. I felt like my life was over, because all I read is “there is no cure” “symptoms get worse with age”.. I thought my life was over. Then i came across this post and now i have hope. Thank you from the bottom of my heart. I just had surgery to dilate my urethra and I start bladder instillation and PTNS on Friday.. I will work on my diet too now! Wish me luck. All the best, Silvia
Hi Silvia, I’m so sorry to hear about your difficult process!! Yes, best wishes. I’m so glad you found the article and can start making some dietary changes. Let me know if you have any questions.
Em H says
Hello, I was curious as you healed your IC with these diet changes did you find you were able to reintroduce any teas or coffee (even decaf) or were those still off limits?
Sure, so I have found that overall coffee just isn’t a healthy drink for most people, so I avoid it. It would not, however, cause me IC symptoms or regression if I drank it; there are just other qualities in it that aren’t ideal, even in regard to its pH and how it affects digestion. For teas, I do avoid caffeine now; again though, it wouldn’t affect any IC issues. My favorite healthy tea is roasted dandelion root (this one). I also like Teeccino’s Dandelion Dark Roast Tea (this one), which has natural coffee flavor added. Both are really dark, which is what I like best and super satisfying. Herbal teas like ginger and mint are fine, too. I don’t do a lot of others, but they wouldn’t affect IC issues if I did. I hope that helps! 🙂
I feel that you didn’t fix your IC. I was having food intolerance too and I did an elimination diet. Until I went to the best urologist that I ever had and he found the root caused of my IC. I can eat anything now. I feel that if you still can’t eat fruits you didn’t fix your IC. You are just managing the symptoms. If fruits were the problem. You will have problem IC since you were a baby. If everything started after giving birth maybe the root cause is there and you don’t see it. My honest opinion.
Hi Dan, thanks for your opinion and YAY on being well; I’m so glad for you! There’s a bit more subtlety here, too, that can be discussed. One’s food intolerance creates a weak link, or a digestive opportunity for weakness to gain a foothold. Yes, it’s only part of the problem, but digestion is always worth honoring. Personally, I did find deeper wellness as well, and I can now eat fruit if I’m detoxing well and in a warm climate etc, but because my body is vulnerable (having had so many autoimmune diseases, all in remission now), I am still best not to eat fruit too often. One’s food intolerance is information worth having, AND it can put one’s symptoms completely in the past, which is a how-to worth knowing and doing. Not everyone can have your experience, but most people can change their diet and see real results! 🙂