How I healed my interstitial cystitis

How I Healed My INTERSTITIAL CYSTITIS

Megan Food Philosophy, Healing Diets, Health & Nutrition 102 Comments

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This 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. I do, by the way, include his contact information further down in this article, for those of you who want to take advantage of his dietary recommendations.

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Firstly, what is Interstitial Cystitis, for those who don’t know?

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.

What is Leaky Gut?

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!

How I Healed My INTERSTITIAL CYSTITIS

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 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.

 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.

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.

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 potty, 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 not need to have a full (phone) appointment with Dr. Zeff; you can simply order the food evaluation through the mail to find out to which foods you are intolerant. The evaluation costs $150.

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!

New Recipes

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.

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.

Cheers, Megan

*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.

  • Emily @ Recipes to Nourish

    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.

  • linda spiker

    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

    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.

  • Megan Stevens

    Thanks, Emily! <3 🙂

  • linda spiker

    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

    Oh my goodness. I guess part of me is glad that mysteries still exist, especially when they are good ones! I’m so glad for him! Perhaps we’ll know the explanation some day. Lindsay’s progress & healing… some day, too!! <3

  • Renee Kohley

    This is amazing! I have never heard of this – you are such an inspiration!

  • Susanna Zahratka

    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!

  • Natalie

    Are you able to eat grains and dairy still, or do you eliminate those as well?

  • Megan Stevens

    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.

  • Megan Stevens

    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. 🙂

  • Megan Stevens

    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!! 🙂

  • 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

    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.

  • I am so glad you are better. Thanks for sharing your story.

  • May

    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

    Thanks, Anna.

  • Megan Stevens

    I hope so. Thanks, May.

  • Allie

    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

    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!!

  • Mimi Kelly Johnson

    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

    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

    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

    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

    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

    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

    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

    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

    Thank you!

  • Megan Stevens

    You’re welcome! 🙂

  • Charissa

    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

    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!

  • Allie

    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

    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!!

  • Joy Gardner

    Hi Megan,

    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

    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!

  • Karen

    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??
    🙂
    Karen

  • Megan Stevens

    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

    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.

  • Karen

    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.

    🙂
    Karen

  • Megan Stevens

    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

    Blessings to you, too! I’m SO thankful and glad that you already feel relief and improvement!

  • Jill Boman

    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

    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

  • Brianna JC

    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

    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

    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

    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

    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

    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

    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?

    Thank you,
    Tami

  • Megan Stevens

    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

    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

    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

  • Michelle

    Hi Megan!

    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

    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!

  • Ciara

    Hi Megan,

    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?

    Thanks!
    Ciara

  • Megan Stevens

    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.

  • Ciara

    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,
    Ciara 🙂

  • Megan Stevens

    Sure, no problem. Go to this page: http://salmoncreekclinic.com/contact/ and you’ll find the phone number there. 🙂

  • Penelope Michaelidou

    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

    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

    Thank you!

    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

    You’re welcome. Best of luck!! xo

  • Rachel

    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.

    -Rachel.

  • Megan Stevens

    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!

  • sistadana

    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

    Thank you for sharing your insights and experiences. So glad you are encouraged and experiencing wellness.

  • 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 🙂

  • Natalia McCarty

    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.

  • Megan Stevens

    Hi Layla, wonderful!! Thank you for sharing! 🙂

  • asia

    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

    Hi Asia, D-Mannose is indeed very helpful in many UTI cases. But it will not help IC. Thanks for the great question!

  • AnneMarie

    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?

  • sistadana

    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

  • Megan

    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

    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! 🙂

  • humble

    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

  • JoGrow Smith

    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

    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! 🙂

  • sistadana

    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. ❤️

  • Lara Ahmed

    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

    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.

  • Miss.

    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?

  • Mimi Kelly Johnson

    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.

  • Megan Stevens

    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.

  • Miss.

    Thank you!

  • Michaela Gower

    Hi Rachel! I would like to get in contact with you regarding IC.

  • Xheni1995

    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

    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.

  • Xheni1995

    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

    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.

  • Mikaila Richens

    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

    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!!

  • Krystal Dobrin

    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..

  • Virginia Royals

    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.”

  • Virginia Royals

    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!

  • Virginia Royals

    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!

  • Xenia Danilova

    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?

  • Lucas

    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

    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

    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. 🙂