Can you tell us your story and how you ended up becoming a dietitian for people with interstitial cystitis (IC)? 

Yeah, of course. My entire childhood, I always had bladder pain and it hurt every single time I peed. It felt like I was peeing fire. I thought this was normal and I pushed through the pain. I had a fairly normal childhood outside of that and I played three sports. I would get so much pain, but there wasn’t really anything that could be done about it. I told my parents and they brushed it off. 

When I was 17 or 18, I made my way onto Google and I looked up my symptoms and self-diagnosed myself with interstitial cystitis. I had never heard of it before, but the symptoms lined up with what I was experiencing. I pushed my mom to make me an appointment with a urologist. That first appointment wasn’t the best because the doctor was judgy and I didn’t feel comfortable there. The doctor gave me the old “wipe front to back and don’t shave down there”. I left there feeling kind of embarrassed and I’m not sure why. 

Then I started my treatment journey which spanned from when I was 18 to 23. Going into college, I had this procedure called hydrodistension which is where they go in and look at your bladder wall and they stretch it out with water or some sort of solution. After that, I had an incredible frequency that I didn’t have before. 

I had all this urinary frequency and I was living in a dorm room with a roommate and it sucked because I had to go to the bathroom every 20 to 30 minutes at night. I played volleyball in college and we did a lot of traveling. There was a lot of stress from school and athletics. There was a lot of pressure to perform. We had to wear tight spandex which isn’t helpful for someone with pelvic floor dysfunction. 

In terms of treatments, I tried everything that my doctors were recommending. I tried installations, botox injections on my pelvic floor, and medications that had risky side effects. Nothing was working. At some point, somebody recommended the IC diet to me. I essentially just brushed it off thinking “There’s no way my diet is going to affect my bladder pain”. At one point I eventually hit rock bottom and I felt so helpless. I felt like I wasn’t going to be able to do the things I wanted to in my life so I decided to give the diet a try. 

I was a nutrition student in college and I had some knowledge about elimination diets, but not a lot. I tried an elimination diet and it was an absolute train wreck, but it did help me identify what my triggers were and I was diet sensitive back then. That gave me some relief. I also started to take my stress seriously. I was very stressed as a college student and I started working on ways to cope with that. I started going to therapy and pelvic floor physical therapy as well. 

I was working on all of that for about a year or two and my symptoms started to slowly reduce. I am 27 now and I consider myself 95% pain-free. Stress is still a really big trigger for me. They didn’t teach us how to navigate an elimination diet in regard to IC when I was in school. One day I was at a support group meeting on Facebook and there was someone who said that she was an IC dietitian. I did some research on her and found that she was the only IC dietitian in the world. I thought that was impressive but I also realized there was a need for IC dietitians. That became my long-term goal. 

After I became a dietitian, I worked in the hospital system for two or three years. Then the pandemic hit and I got furloughed and I thought “It’s now or never”. I started my business Callie K Nutrition and I learned on the go. I’m three years into this and I’m approaching my 100th client. I thought I could make a decent impact in what I did, but I was surprised to see how big the results were because I have clients going into remission and people are able to do the things they want to do in their lives. We have helped so many people and I’m very proud of that. 

Can you tell us about the IC diet and why it should not be followed long-term? 

The IC diet was created back in 2007 after a study was conducted. The study involved asking people with IC what foods and drinks they thought their bladders were sensitive to. The IC diet was born out of 100 responses so it wasn’t that large of a scale. Other studies have been done, but a lot of the research is purely anecdotal. There’s no way to study the IC diet alone because there are so many other factors like stress, hormones, and allergies. The researchers created the IC diet with the intention of it guiding an elimination diet to learn everyone’s unique triggers because we’re all very different. 

There are risks associated with the IC diet. Some people get stuck following the diet for way too long. That would be like six months to a year. People get stuck eating the same 15-20 foods and not having any variety in their diet. People can develop nutrient deficiencies, have significant weight changes, and they can develop a poor relationship with food. That last one is the most common. We tend to demonize food. 

In my experience working with clients, food is usually not the problem. It’s usually something like stress, pelvic floor dysfunction, or hormonal imbalances. People will come to me eating the same ten foods for a year or two and be terrified to try anything outside of those foods. After doing an elimination diet, they learn that they’re either not diet sensitive at all or they have like three or four foods that they are sensitive to. It’s never near the level of sensitivity that people think they have. 

Fear of specific foods can trigger flares and people will identify the food as being the problem. In reality, it was the stress they were feeling about that food and that’s where it gets complicated. 

My goal is to help people get out of this restrictive mindset, start looking outside of just diet, and nourish their bodies. Your body isn’t going to heal itself if you’re not feeding it what it wants. 

Just to clarify, would you say that the IC diet is different from an elimination diet? 

Yes, it is. The IC diet tells you to avoid the most common bladder irritants which are citrus, tomatoes, caffeine, carbonated beverages, alcohol, soy, MSG, and artificial sweeteners. An elimination diet is where you remove all the things I just listed from your diet for three to four weeks, and then you start to test them one at a time to see how your body responds to them. It’s kind of like a science experiment. 

I have my own protocol that I use, but you do a three-day testing period for each item and then you move on. That’s how you identify your body’s unique response to each food item. 

Looking through your website I see that you offer an IC masterclass, an IC mini-course, and an IC collective. Can you tell me a little about each of these options? 

The master class that we have right now is free. It lists the top five elimination diet mistakes. At the end there’s a special offer for people looking for more guidance and support. This funnels into my main offer which is Road to Remission. This is the highest form of support that you can get. It’s a hybrid program that has both individual and group elements to it. I guide them through a personalized elimination diet. It has a 12-week education course and community support. We have over 90 members worldwide and we have two Zoom calls each week. The community support portion is important because most people with IC don’t know anyone else in their life with IC. Just being able to talk at least once a week with other people who understand what you’re going through is really helpful. People can pick up tips and tricks from other members and it makes a huge impact on their physical symptoms. 

The IC collective is a membership I created when I realized that I didn’t like support groups for IC on Facebook specifically because there’s a lot of negativity like people lashing out at one another and judgment with certain decisions. I created my own community that is a safe space and judgment-free zone. It’s very positive, it includes one master class every month so it has an education component to it. I teach about various topics related to IC and we have a weekly Q&A with me. There is fact-checking which is not something you see in support groups. I try to answer people’s questions with evidence-based answers and if there isn’t evidence or research, I will give my professional observation. Then we have a private support community within that as well which is for people to connect with each other. 

Lastly, Intro to IC is a mini course I created for people that are new to the condition. It lays the foundations in terms of knowledge and it’s a four-week self-study course. 

I have various levels of support in these programs and it really just depends on what kind of transformation they’re looking for. It also depends on what levels of finance they’re able to invest and the amount of time they’re looking to invest. That’s why I have a general application to work with me so people can give me all of their details and I’ll give them my recommendation on what would be the best fit for them to reach their goals. 

Outside of diet, what are other topics that you cover in Road to Remission? 

Outside of diet, we have classes about the different types of IC, pain science, different root cause theories, and supplements, and we have classes that have been taught by guest experts on things that are out of my scope of practice. We have had therapists come on and do a class on mental health, we had a class on mindset, and other classes on sex and pelvic floor physical therapy. We have a lot of variety. It is not all diet-focused. 

What is your advice for someone who is newly diagnosed with IC? Where do they start? 

Let yourself feel all the emotions. You’re probably going to feel overwhelmed, and happy that you have a diagnosis, but also scared and isolated. Let yourself ride that emotional rollercoaster but realize that even though this is a chronic condition, it is a manageable condition. You can still do all the things in life that you want to do. 

There are many people that go into remission. A big tip that I have for people is to get into pelvic floor physical therapy right away. That is usually impactful for many people. When it comes to nutrition, consult with a registered dietitian if you can. Don’t panic when it comes to diet. If you feel ready to investigate your triggers, you can do an elimination diet. 

Find support that works for you. There are support groups out there on Facebook and other places, but if you find that it gives you more negative feelings than positive feelings, I would say try to find something else that works for you. I would definitely recommend my program because of that community element and it’s positive. There are people on social media that are more positive. You don’t want to do this alone. You want to have at least one person in your life that can relate to you and understand what you’re going through. 

What is your advice for someone who has had IC for years and nothing they have tried has worked? 

I would say to take a step back, revisit the basics, and look at your stress levels. I can’t begin to tell you how common it is for stress to be a trigger, whether you know it or not. If you’re stuck in fight or flight, you’re likely not going to get rid of your symptoms if you don’t address that.  

If you are not clear on your diet triggers, conduct the elimination diet. There are certain supplements people can try. Sometimes you have to get creative. I think having the community to bounce ideas off of and listen to other peoples’ experiences is really helpful. It really comes down to trial and error. Sometimes if your mindset isn’t where it needs to be during a treatment, the treatment may not have the full benefit that it could have if your mindset was in a better place. For example, the first time I tried pelvic floor physical therapy I was very skeptical and convinced that it wouldn’t help me. Years later, I went back and it was a completely different experience because I understood then what we were doing and I did my homework at home and that’s when I saw some improvements. Sometimes you just need to work on your mindset and come back at it again. 

I like to tell people to look at their IC like it’s a puzzle. The solution is going to be unique to you and it’s going to take some time to find those puzzle pieces and the way they fit together. 

Can you talk about some supplements that help people with IC? 

There’s nothing that works for everyone. I will say the one that’s most helpful for the majority of people is Desert Harvest Aloe Vera. Their brand removes 100% of the anthraquinones, which is the property of the plant that causes a laxative effect. Most brands don’t do that. They have the most success and they do their own research. 

Some people find anti-inflammatory supplements like omega-3 fish oil, quercetin, and D mannose. Those can be helpful for frequency or urgency. Some people find success with pumpkin seed oil. There is more than that, but those are the ones that immediately come to mind. Supplements are definitely trial and error. 

What role does the nervous system play in interstitial cystitis? 

Many people are stuck in a state of fight or flight. Their nervous system thinks that there’s a constant threat and there’s a lot of physiological things that happen when you’re in this state. People who struggle with this usually have GI issues as well, like IBS. Stress is usually the biggest issue for my clients and myself. Newer research is showing that there are subtypes of IC that may be nervous system related. More research is needed in this area. 

What is your advice for someone going through an IC flare-up? 

You have to identify what was the cause of the flare-up and what type of flare-up you’re experiencing. There are two types of flares: a bladder wall flare and a pelvic floor flare. The bladder wall flare is usually caused by something diet related and the pelvic floor flare can be triggered by stress, sex, or some sort of pelvic trauma. If stress is the issue, you’re going to need to calm your nervous system which can involve stretching and meditation. If you have a flare that was caused by food, you could try drinking a lot of water to flush it out of your system and dilute your urine making it less acidic. Some people find success with ¼ teaspoon of baking soda in eight ounces of water because that helps neutralize any acid. None of that is really research-based, but that’s something that everyone in our community knows about. There are also medications that can help. 

For me, putting ice on my pelvic floor helps a lot. Other people prefer heat. Everyone is different in finding what works for them. 

(Here is a link to Callie’s flare management blog post: https://www.callieknutrition.com/post/interstitial-cystitis-flare-management-ultimate-guide)

Is there anything that you would like to talk about that you want people to be aware of in regard to IC? 

I want the general public to be more aware of interstitial cystitis. We want them to have heard that term before. We want people to understand that even though we look healthy, we can be going through physical pain because it is an invisible illness. 

I want people with IC to know that there is so much hope and even if your doctor tells you there’s no cure for this, there are so many things that can be done to minimize your symptoms and you can still live the life you want. 

There is a lot of medical gaslighting happening and I would love for doctors to really try to empathize with us. Just try to put yourself in our shoes. Don’t make us feel like we’re making it up or just being dramatic. It really is a painful condition that takes over your life and as a professional to a doctor, I would say that when you diagnose people, refer them to a registered dietitian or at least take the time to educate the patient on the diet. Don’t just hand them the IC diet list. Make sure you’re explaining it because the food fear is stemming from the lack of education occurring on the diagnosis. We either need more thorough education or we need a referral. 

Takeaways:

• An elimination diet can help you discover what you’re specific food triggers are.

• Diet is rarely the sole cause of IC symptoms. It’s usually stress, pelvic floor dysfunction, or hormone imbalances.

• Try pelvic floor therapy as soon as possible.

• It is possible to go into remission from IC.

Thank you so much to Callie Krajcir for doing this interview with me. She is such an amazing resource for the IC community and she is helping so many people. Here is her website if you’re interested in learning more from her: https://www.callieknutrition.com/

Hang onto hope guys!!