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Why You Shouldn’t Follow The IC Diet Long-Term

Why You Shouldn’t Follow The IC Diet Long-Term

By Callie Krajcir

Registered Dietititan, IC Warrior 

I vividly remember sitting in my urogynecologist’s office years ago and being told that I should “cut out” items from my diet such as coffee, alcohol, citrus, chocolate, and artificial sweeteners, amongst 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 favourite 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 favourite 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 and I had to navigate these daunting changes alone.

It wasn’t until I learned through my own studies exactly how the IC diet was created. Let me share with you what I discovered…

How The IC Diet Was Created

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 with a confirmed diagnosis of 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. Of those 104 participants, 90.2% 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 on 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.

Now, let’s review the benefits of this study:

  1. It proves that diet does affect at least SOME people with IC. It provides us with some insight into 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 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. 

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 amongst the medical community.

A Common IC Diet Misconception

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 indefinitely. 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. 

When I tell people that they should NOT be following the IC diet long term, they are usually confused, and I’m typically the first person to tell 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 discussed 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.

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. They can also cause you to develop a poor relationship with food. 

The important thing to remember about IC is that every single person with the condition is unique. We all have different symptoms, responses 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 “IC puzzle” to solve in order to reduce our symptoms.

Busting The Myth

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 is the “gold standard” for identifying food sensitivities. It typically consists of 3 phases: baseline, elimination, and testing. In a very simplified explanation, you remove all potential bladder irritants from your diet for a certain period of time, then reintroduce them back into your diet to see how your body responds.

elimination diet

The Bottom Line

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”.

Want more information?

Get my FREE IC Masterclass that reveals: 

  • The 3 steps you need to take to get on the road to remission
  • ​Debunks IC nutrition “myths”
  • What personality traits make you more likely to succeed with diet changes

Free IC Master Class

If you have any questions, send an email to Follow me @callieknutrition on Instagram/TikTok for more nutrition and IC tips.

Callie Krajcir, MS, RD, is a Registered Dietitian specializing in Interstitial Cystitis. She owns Callie K Nutrition, an online nutrition coaching service where she helps people with IC manage their symptoms through diet.