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.
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 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.
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!