Why You Shouldn’t Follow The Interstitial Cystitis Diet Long-Term
Updated: Aug 11, 2022
In this post, I will dive into the myth that you should follow the IC diet for an indefinite period of time. I will provide a history of the Interstitial Cystitis (IC) diet and what steps you can take to identify your dietary triggers.
I vividly remember sitting in my urogynecologist's office years ago being told that I should “cut out” items from my diet such as coffee, alcohol, citrus, chocolate, and artificial sweeteners, among many other things.
My doctor told me, “this is the IC diet, and you might find some relief following it”.
I thought, So I have to remove all of my favorite foods & beverages from my diet and there is only a chance that I will get relief?
What made things worse was based on our conversation, I was under the impression I’d have to eat this way forever. This left me feeling overwhelmed and also just really sad that I wouldn’t be able to eat my favorite foods for the rest of my life.
In the weeks following, I realized just how food-centered our society is. I didn’t know what to order when going out to eat. I was unable to go out for drinks with friends. I started to experience crippling anxiety and depression. I didn't want to leave my house out of fear of triggering a flare.
To make matters worse, I didn’t have anyone in my life who understood what I was going through. I was on my own... I had to navigate these daunting changes alone.
It wasn’t until I learned through my own studies that I learned exactly how the IC diet was created. Let me share with you what I learned....
In 2007, there was a study completed by researchers at Long Island University, that aimed to identify if diet plays a role in IC symptoms.
The study consisted of a validated questionnaire that was sent to 327 people who were confirmed by a doctor to have IC. The questionnaire addressed general questions about the effects of comestibles (food, beverages, or supplements) on bladder symptoms. The questionnaire also asked participants to indicate whether each of the 175 items included worsened, improved, or had no effect on symptoms.
104 of 327 questionnaires (32%) were returned. 90.2% of respondents indicated that certain foods and beverages increased IC symptoms. The most bothersome items identified by the study include: caffeinated beverages, carbonated beverages, alcoholic beverages, certain fruits and juices, artificial sweeteners and spicy foods.
Let’s first look at the potential flaws in this study:
1. The return rate was exceptionally low. At 32%, this makes the sample size of the study only 104 people. This means that the conclusions drawn from this study are based off of what 104 people believed they were sensitive to.
2. This study relied heavily on anecdotal data. In the researchers defense, there really is no controlled way to study the effect of diet on IC symptoms. But essentially, we are going off of what people with IC thought they were sensitive to. I’m not saying they weren’t sensitive to these things, but my point really is that there are potential other variables that could have come into play, such as stress and other conditions.
3. The response rate of this study may be skewed due to bias. What I mean by this is the people who returned the survey may have been influenced by their experience with foods and beverages affecting their IC symptoms. For example, if a person believed that diet played a large role in their symptoms, they may be more motivated to complete this lengthy questionnaire than a person who doesn’t believe their IC is affected by diet.
Another potential factor contributing to this bias is that people were required to return the questionnaire via mail, which adds an extra step to the process. Studies completed at the present time have the ability to provide convenience to participants through online questionnaires.
Now, let’s review the benefits of this study for the IC community:
1. It proves that diet does effect at least SOME people with IC. It provides us with some insight on what may be contributing to a person’s IC symptoms. Without it, we would be starting at ground zero.
2. It points us to which foods and beverages specifically may be most bothersome for people with IC. The anecdotal evidence isn’t pointless. Researchers were able to use the data obtained in this study to create two different diet lists- one that has two columns (most and least bothersome) and one that has three columns (Bladder-friendly, Try It, and Caution).
3. It serves as a starting point for future research. As I mentioned earlier, it is virtually impossible to study the effects of diet as a single variable in relation to IC symptoms. There have been a few studies conducted since, but there is still much more we need to know. For example, we know that a lot of foods and beverages that are acidic, such as citrus fruits and coffee, are on the top of the “most bothersome” list.
Basically, what we have is a diet that can be extremely helpful in decreasing symptoms, but one that has A LOT of misinformation circulating around the internet and among the medical community.
I talk to many people with IC on a daily basis - whether that be through social media or support groups. The common theme is that people are under the impression that they are supposed to follow the IC diet for the rest of their lives. They either had a physician or other medical provider straight up tell them that, or imply it, or even just didn’t explain it well enough. And let me just say this - the fact that diet modifications are even mentioned upon diagnosis is a win. It is one of the “first line” treatment methods recommended by IC organizations.
When I tell people that they should NOT be following the IC diet long term, they are usually confused, as I’m the first person to have told them this. They are confused since they were under the impression the IC diet was a long term treatment method. But let’s get this straight - it is NOT.
As you can see in the ’07 study we unpacked earlier, the IC diet was created based on anecdotal data obtained from a little over 100 people - not to mention it occurred 14 years ago. We really haven’t had many updates to the IC diet list since it was created (I’m working on this).
If you Google “IC diet list” you will see either a 2- or 3-column diet list and will see that the “diet” is pretty restrictive. Any type of restrictive diet should not be followed long-term (exceptions would include conditions like Celiac disease and lactose intolerance) because they put you at risk of developing nutrient deficiencies or even becoming malnourished.
The important thing to remember about IC is that every single person with the condition is unique. We all have different symptoms, reactions to treatment, past medical histories….and diet sensitivities. This means that not every person with IC is sensitive to the same things. We are all different, and have our own unique puzzle to solve in order to reduce our symptoms.
The IC diet was created to serve as a guide to help you identify your unique dietary triggers. If there is one thing I want you to take away from this blog post, it's this simple fact.
You may be wondering, But how are we supposed to figure out our unique dietary triggers?
You conduct an elimination diet utilizing the IC diet list. An elimination diet typically consists of 3 phases: baseline, elimination, and testing.
The baseline phase is usually only 1 week in duration and is done to obtain baseline data. Without this, you wouldn’t have anything to compare back to once you are into the later phases.
The elimination phase is when you will avoid all potentially bothersome items you can find in the “try it” and “caution” lists of the 3-column IC diet and the “most bothersome” items of the 2-column IC diet list. This can last anywhere from 2-4 weeks. If you are someone who is diet sensitive and are conducting your elimination diet correctly, you will achieve some extent of relief in your symptoms during this phase.
After the elimination phase, you will begin a testing phase where you “test” each food, beverage, and supplement that is potentially bothersome one by one.
An elimination diet is known as the “gold standard” in identifying food sensitivities - especially in the IC community. Some people like to take the elimination diet to the next step and eliminate foods high in oxalates or histamine or even foods containing gluten. I would not recommend doing this unless working with a Registered Dietitian who can ensure it is done safely.
In my Road To Remission program, I guide my clients through an elimination diet and help them with their individual diet needs and pre-existing sensitivities. If you want to learn more about the program, click here.
You do NOT have to restrict yourself for the rest of your life. The reality is, you more than likely can tolerate multiple things that are not considered “bladder-friendly”.
Invest a few months time into conducting an elimination diet and make sure it is done right, so that you can avoid any nutrient deficiencies or doing it incorrectly (click here to read about the top 5 mistakes I see people make during an elimination diet).
If you have any questions, send an email to email@example.com. If you are on Instagram or Tiktok, follow me @callieknutrition for more nutrition and IC tips.