Updated: Dec 7, 2022
This is a transcribed episode from my podcast, IC You. Click here to listen to the episode.
Today I wanted to take the opportunity to talk about diet and Interstitial Cystitis (IC). You know, this is what I do. I am a registered dietician and I got into this field because I'm good at nutrition and this is the only thing I was good at in college. I was actually an occupational therapy major before. I was doing well in my nutrition 101 class and then also I wanted to help people with [00:04:00] IC because I had struggled with it my whole life. I didn't have relief until I looked at my diet and made some diet modifications and did an elimination diet. I finally saw the power of diet, the importance of diet, in managing this condition.
Registered Dietitian vs Nutritionist
So I first wanted to talk about the difference between a registered dietician and a nutritionist. The reason is because I see people thinking those two are the same thing and they really are not.
To become a registered dietician in the United States, you have to go to a four year undergraduate university and major in nutrition.In 2024, they are going to start requiring an additional master's degree in nutrition. After that, you have to be accepted into a dietetic internship, which are actually very difficult to get. I think when I was going through it, the acceptance rate was about 50%. So it was really competitive.
During this internship, it is a year long, you have to do 1200 hours of experience in different areas of nutrition, like clinical. So working in a hospital. Outpatient, food service, community nutrition, and then they let you pick a specialty that you can kind of get more hours in, but basically they train us in everything.
The internship is one year long, I had to pay $11,000 out of pocket, and they don't recommend working during your dietetic internship. So basically you are paying to be an intern and to be treated like crap, honestly, intern life is not the greatest.
Once you complete that, you're eligible to sit for your RD exam, which is a really difficult test that tests you on everything you should have learned in college and your internship. Specifically I had a lot of questions on foodborne illnesses, a lot of food service questions. So memorizing equations, knowing scoop sizes, knowing how many inches off the floor the storage shelves need to be, what type of floor is the best for what type of operation, what type of lighting is appropriate. I had to know what diets are best for which diseases. We had to know how to calculate tube feeding formulas, that's just kind of a brief overview of what we needed to know.
I just want to point out, interstitial cystitis was not something I was ever taught in school. It was never mentioned in undergraduate. It was not mentioned in my master's program. It was not mentioned in my internship. I am positive that this is the case with the majority of universities and dietetic internships.
So if you're wondering why I am one of two dieticians who specialize in IC in all of North America, that is the reason. It really is a shame. And it's something that I'm working to educate other dieticians on because diet modifications are the first part of the recommended first lines of treatment as recommended by the American Urologic Association.
We know that is one of the first things everyone is supposed to do upon being diagnosed with IC, that along with educating yourself and managing stress. Then after that, you can go into pelvic floor PT and meds and procedures if you need, but we're supposed to start with diet. So why are universities not teaching about this? Big issue. So like I said, I am working to educate as many dieticians as possible.
Hopefully in the future, universities can start teaching about this and will have more knowledge and more people besides me and the other dietician, Julie, who do this and specialize in only this. Really it’s difficult for people to understand what people with IC go through. And as a dietician we all know how to help people do elimination diets, but at the same time, if they don't have IC or if they've never known anyone with IC, then it can be difficult to help. At least in that case, if they're educated on the IC diet and what that entails, then they can be of assistance and they can help you do an elimination diet that is safe because it is a complicated thing. I can get into that in a bit.
Seeing a dietician in the United States is difficult because insurances don't always cover it. Usually they'll cover visits for obesity, diabetes, kidney disease, but if the diagnosis is Interstitial Cystitis, insurance may not cover it unless you have a really good insurance plan. So it can be difficult to get help with this. That's really the main reason that I chose to specialize in IC and why I chose to leave my hospital job over a year ago to start my company and start the Road To Remission program. It is so needed, working with people and helping them see that they don't have to be afraid of food and they most likely can consume multiple things that they didn't think they could through an elimination diet. It is just so rewarding to see people gaining all of their confidence back with testing things, going out to eat, navigating social events, and knowing what to say to family members to educate them on what they're doing and why they have to follow a restricted diet for a period of time. So that is stuff that I work with my clients on.
I am on so many social media platforms trying to educate the IC community about diet. I'm on Instagram, I'm on TikTok, I'm on Facebook, I'm in all the Facebook groups, besides the one I got kicked out of, I'm even on Reddit doing my best to be everywhere and educate as many people as possible. It is exhausting sometimes having to be the only one, not the only one, but one of the only people doing this. So that's why I thought this podcast could be a really good resource for people because it never expires. It's always gonna be there. You can go back and listen to episodes and really get the most out of it.
Creating The IC Diet
Now, let's talk about the elimination diet, but first let's take a step back and talk about the research and how we even came to have an IC diet.
Back in 2007 at Long Island University, there were researchers that got together.I know Dr. Robert Mulk was there, Barbara Shorter is a registered dietician, Julie Byer, a registered dietician, and a couple other researchers got together and they created a survey or questionnaire that asked people with IC what foods, beverages, and supplements they thought that they were sensitive to. They mailed it out to over 300 people and they ended up getting, I believe the number was 104 surveys back. That is how the IC diet was born.
So we now have a two column IC diet, so a most bothersome list and a least bothersome list. We also have a three column diet that was developed a little bit later that has a bladder friendly column, a try it column, and a caution column. The one I use for my clients is the three column. I do feel that that list has some items on it that are pro-inflammatory and I do recommend trying to limit these items, but I know that it is very difficult living with IC and living with these restrictions.
What researchers found in that study was that there's a small group of bladder irritants. I'm sure you have all heard before things like citrus, tomatoes, caffeine, carbonated beverages, chocolate, soy, MSG, alcohol, those items were found to be the most bothersome based on the people who completed the survey. There were a few studies that were done in the later years to support those findings.
The thing that gets misconstrued in the IC world is that people need to follow the IC diet forever. I see that a lot. I don't know if it's because doctors are telling people to do that or doctors are giving people the IC diet list and telling them good luck and not educating them on what to do. I don't know which one it is or if there are other people in their lives telling them that, but it's just not true. The IC diet was created to help guide an elimination diet. Okay. So what do I mean by that?
The Elimination Diet
The gold standard in identifying any type of food sensitivity is an elimination diet. I would not waste your money on any sort of food sensitivity testing. I would do an elimination diet, and how you can do this is to make sure that first you have three months of time to dedicate to this because you don't want to do this incorrectly. You don't want to waste your time. You don't want to waste your focus or your energy on doing this incorrectly.
We can break an elimination diet down into three different phases; a baseline phase, an elimination phase, and a testing phase.
You need to view the elimination diet like you're doing a science experiment. In that baseline phase, we are obtaining baseline data. So things like what you're eating, how you're preparing your food, what you're drinking and when you're drinking it, how often you're urinating, how much you're urinating. So actually measuring your urine in a measuring cup.
You can measure your stress levels, you can measure your exercise, you could track your menstrual cycle, you could track your pain levels at multiple points throughout the day, but basically we want to get one week's worth of data that we can compare to as you move through the elimination diet. So that is for one week.
The next three weeks, or you could do two to four, that's the range that we work with. For those weeks you would be following the bladder friendly column of the IC diet. So that green column, you can find it on the IC Network. That is what you're going to eat off of for two to four weeks. You want to make sure you're not eating anything outside of that because if you eat something on the try it list or the caution list, then you will have to extend your elimination phase. You want to make sure you are eating 100% bladder friendly off of that list.
If you are someone who is food sensitive, you will likely experience some extent of relief during those few weeks in the elimination phase. It may not be anything significant, it may be your pain levels go from a nine to a six. Your symptoms most likely are not going go away, but they are likely going to decrease. Or if you're going to the bathroom 40 times a day, it may go down to 20. You have to pay attention. That's why we track these things so that you can compare back to where you were at baseline so that we can measure if you're having progress.
If you are not experiencing relief during that time, there could be a few things happening. You could have slipped up here or there, there could be something you're consuming that is a trigger that you're just not realizing. You may not be diet sensitive, and that's what we want to learn through this elimination diet.
So after those three weeks, you can go into a testing phase, which is the fun part, but also can be nerve wracking. This is for the remainder of that three month estimated period of time. And basically in this phase, we're going to be testing foods, beverages, supplements that you have removed. So things on the try it or the caution list, you're going to try them one at a time.
Each testing period is going to be over the course of three days. On day one, you have a small amount, so a bite or two of whatever it may be. If you are okay on day two, you would increase that in size to about whatever half a portion would look like for you. If you have no symptoms on day three, you would have whatever a full size portion looks like for you. Then if you are successful, you have no symptoms, you'd take two to three days off. The reason we do this is because having a reaction to food can occur within 20 minutes of eating something or it could take as long as three days to show up. So that's why we want to have a washout period just in case you do have symptoms.
If at any time you develop symptoms or a flare, you want to stop eating that item, record the reaction, take two to three days off, or as long as it takes to settle down your symptoms, and then move on to the next thing. Whether you are successful or not, you're gonna remove the item until the very end of the diet. That's what the pattern looks like as you go through the elimination diet.
Goals of The Elimination Diet
So there are three goals to an elimination diet, and I tell people this pretty much every day.
Are you food sensitive or not?
What foods or beverages are you sensitive to?
If there's something that you're sensitive to, can you have it in a certain amount? What I mean by that is if you know that you are sensitive to tomato sauce in a regular size portion, but you have learned that you can have it in a quarter cup serving with Prelief, we want know that. We want know what our limits are.
Increase confidence with eating
All of these things will help improve our quality of life, especially since we live in a food centered society where there is a dinner or a party or some sort of event that there’s food everywhere. There are triggers everywhere. We want to know our limits and that we can indulge in something once in a while to help us with that feeling of normalcy. We don't wanna have to avoid things, that makes life so difficult. So that's why you're doing this.
So learning your limits can help build confidence, not have a question mark when you're eating something at a restaurant, or having anxiety which could produce a flare. We really want break out of that food fear mentality. I've found that through an elimination diet and learning your unique triggers, that it is super helpful for building confidence.
Your Triggers Are Unique
In terms of what I just said there, your unique triggers are gonna look different from my triggers and my triggers are gonna look different from the next person's triggers. An elimination diet will help show you your food triggers and it'll also help you explore non-food triggers. Things like stress, hormones, allergies, maybe you notice that tight clothing is bothering you or exercise.
Different factors that might not be diet related can be things that you can learn also through an elimination diet. What you need to be careful of during an elimination diet is the fact that the bladder friendly list is restrictive. But when you think about it, you're only eating that way for a short period of time. But if you aren't focused on eating a variety of foods off of that list during those few weeks that you're doing this elimination diet, you risk getting nutrient deficiencies. Which is dangerous.
You could show signs of fatigue, hair loss, brittle nails, decreased immune function. If you're getting sick all the time, a whole lot of random symptoms could be signs that you are experiencing nutrient deficiencies. There are even some nutrients that don't show symptoms of deficiency for at least a few months. So my best advice is to work with a dietician if you can. This is what I do. I would love to help you. If not, you can get a referral from your doctor. See if your insurance will cover a visit with a registered dietician who can help make sure you are doing this safely, because it is very easy to do this incorrectly or miss out on one or multiple essential nutrients. I actually see that happen. A lot. People get stuck in the elimination phase. They go months just eating off of the gut friendly list and that's not safe. That is not what you should be doing for the rest of your life.
Like I said, this IC diet was meant to guide an elimination diet. It was not meant to be followed for years because of that restrictive nature. I think it's because people were either told to eat like that for the long term or they weren't educated enough and that's not their fault.
We have a lot of work to do with nutrition education for IC, but it's a work in progress. Back to the uniqueness of your triggers, diet is not a one size fits all thing. Okay. So what I mean by that is yes, it is a great starting point to have a bladder friendly diet and do the elimination diet. I even occasionally will recommend a low oxidate diet, a low histamine diet, maybe removing gluten for a few weeks to see if that helps, but I don't recommend that for everyone because it's only appropriate for a small percentage of people. These diets are not for everyone.
The thing that really bugs me is when I see other practitioners telling people to only follow a low oxide diet or only follow a gluten-free diet. We can't just throw these blanket statements out on the entire IC community. It's just not appropriate. Everyone is so unique. We all have different medical histories. We have different reactions to treatment. My point is there is not one diet that works for everyone, but you can use the IC diet and if you work with a dietician, they can help you determine if you need any more restriction, which, like I said, it's a very small percentage of people. I don't like to recommend those things unless we have a really good reason to, because of that restrictive nature.
I know that there are a lot of people in the IC community that either have a history of an eating disorder or are going through feelings of disordered eating or patterns of disordered eating thoughts. This IC diet can make that worse, it can trigger that in people. So that's why I'm saying be careful, educate yourself. It's fantastic that you're out here listening to this podcast. You're educating yourself, and honestly, I think "elimination diet", that term is scary. I don't think it's self explanatory. I think we need to find a better term or something that sounds nicer and less scary. I've been trying to think of something for a year now and I am still searching. So if anybody has ideas, you're more than welcome to send me a message because I'm all ears.
I think it takes a team, a worldwide team to get the message out. Hopefully we can all learn our triggers and start feeling better sooner, and stop being so stressed. We're already stressed in other aspects of our lives. We don't want food to be an additional stress, because if you're stressed, that can trigger a flare. That is the majority of people who I talk to, stress is their number one trigger, including myself. Know that and be aware of your stress and try to find ways to relax. That is my best advice to you.
Road To Remission
If you are listening to this and you are overwhelmed, you're more than welcome to reach out to me. I wanted to tell you guys more about the program that I offer. If this is resonating with you, if you need to make changes but you just want more information, more structure, you want an organized plan that's personalized to you, then you may be a fantastic fit for the Road To Remission program.
I designed this program to be everything I wish I had when I was going through the worst of my symptoms back in college. I truly believe it's the perfect combination of things to give you the best chance at reaching remission, or at least getting significant symptom relief.
Road To Remission combines an elimination diet, an education course, and a private support community. So the elimination diet is just like I explained to you guys, but I personalize it to each person based on all the factors that I explained earlier. I also have my clients send me their logs every week and I look over them, make sure they look okay, make sure they're eating enough. Any tweaks that need to be made are communicated and step by step I am there for them. I am their nutrition coach through the program and it takes people anywhere from three to six months to complete the elimination diet.
The second part is the education course. So that is 12 weeks worth of classes where I teach you everything you need to know about IC and nutrition. I also have a lot of guest speakers come in where they teach about things like hormones, pelvic floor PT, mindset for chronic illness, stress management, different topics like that, because I truly believe that knowledge is power and with a condition like IC, we have to advocate for ourselves so you can go to your next doctor appointment armed with knowledge and know what to ask for, know what treatment is working for other people, and ask for that with confidence. Stand up for yourself because there's a lot of medical gas lighting out there. If you have that knowledge, then you are better equipped to handle that type of situation. The education course is all prerecorded and can be done on your own time at your own pace. It just is meant to give you information and be convenient.
The last part is the private support community, which is everyone's favorite thing. Whenever they tell me their feedback, they're like, I am obsessed with the Road To Remission community. It is a private group for people in the Road To Remission program. We are everyone's support system. We support one another. We hop onto group calls each week where we chat with people who understand exactly what we're going through. It is super validating. It is great for your mental health to just know that there are other people out there who understand what you're going through and Road To Remission is worldwide.
We are in the United States, Canada, the UK, and Australia, and we are growing quickly. Connecting with people in other cultures is just so interesting and fun, and we give each other lots of ideas and tips. We celebrate each other's wins for the week each week and we help each other get through the tough times. So if you're someone who's looking for more guidance, a structured plan, more education, and a support system to get you through it, this program may be perfect for you.
I offer lifetime support, which means once you're in the Road To Remission community, you are in it for life. There is no end date to this program. You have me in your corner for as long as you need me and you have the group. We're really building relationships that will last a lifetime. I think that is the most important thing. And it's an awesome thing to be able to connect with other IC warriors. So if you are interested in learning more about the Road To Remission program, click this link.
The best thing about Road To Remission is you can start at any time. It's a rolling admission type deal. So it's not like you have to start at a certain time each week or each month. If you wanted to start tomorrow and we got on a discovery call and we determined that you would be a good fit, then you could start tomorrow.