Interstitial Cystitis Diet: Why A Restrictive Diet May Not Be Needed

Most people who receive an Interstitial Cystitis (IC) diagnosis leave their doctor's office confused, so they turn to Doctor Google. However, there is so much information out there that it's hard to know who to trust. Sound familiar?

I've been there, too!

As a Registered Dietitian and IC Warrior, I’m here to tell you that most of the IC information on the web is confusing and not evidence-based. I’ve had IC since I was a kid and it wasn’t until I became a dietitian and took my IC into my own hands that I got relief from my symptoms. Now I’m one of two RDs worldwide who focus on IC full-time. 

In this article, you'll learn why I tell my clients that they don't need to follow the standard IC diet advice. Most people with IC don’t need to limit their diets. There is another, better way to get relief from IC symptoms. Let’s get to it!

The Problems with Standard Interstitial Cystitis Diet Advice

Doctors get a lot of training on diseases and treatments, but not much, if any, education on nutrition. The time they get to spend with each patient is also limited. 

This means they don’t have the time to provide nutrition counseling or answer your questions. That’s why they have a handy dandy pamphlet to hand you with “all the information you need.”

Unfortunately, the standard IC pamphlets contain overly restrictive diet advice. Looking through the standard interstitial cystitis diet guidance, you probably thought, “There’s nothing I can eat!” 

The problem with the advice in the pamphlet and the standard IC diet advice is that it is based on a flawed 2007 research study.

IC diet list found on the IC Network site.

The Weak Research Behind the IC Diet

Most advice for the IC diet is based on a study from Long Island University published in 2007. The authors of the study asked 104 IC patients to complete a questionnaire and were asked to:

Indicate whether each of 175 individual items worsened, improved or had no effect on symptoms. Each response was numerically scored on a scale of −2 to 2 and mean values were generated for each comestible item.

In the study results, 35 foods, beverages, and supplements were found to have scores that were associated with causing symptoms. These foods included:

Caffeinated, carbonated and alcoholic beverages, certain fruits and juices, artificial sweeteners and spicy foods.

Those are the findings that have generated the standard IC diet advice. 

Other more recent studies have shown that those with IC don’t need to follow such a restrictive diet. I'll tell you that most of the IC clients (I've worked with 200+ IC Warriors) I work with inside my Road To Remission program are NOT diet-sensitive.

In fact, a recently published systematic review analyzed 51 studies on common bladder irritants and found inconsistent evidence linking them to overactive bladder symptoms. The results suggest that diet may not affect everyone with OAB and that individual responses can vary. While this study was looking at OAB, this condition is very similar to IC and I think a similar study needs to be conducted on the IC diet.

This is all great news! 

But, before talking about the new way to help those with IC that doesn't involve a restrictive diet, let's talk about the unintended consequences that can happen when following the restrictive standard IC diet.

The Hidden Consequences of Overly Restrictive Eating

In my work with those who have IC, I see three main consequences of following the standard IC diet that no one else talks about.

Nutrient Deficiencies

To avoid painful flare-ups, many people with IC restrict their diet to 10 to 15 foods. That’s all they eat, all the time. Unfortunately, severely limiting foods may instill a fear of foods and eating and doesn’t provide the sufficient vitamins and minerals their bodies need.

When people start working with me, one of the first things we do is assess their nutritional status and look for any nutrient deficiencies.

I understand that people are doing the best they can with the information they have. They will do anything to stop the pain. But it doesn't need to be that way. 

Unintentional Weight Loss

In addition to nutrient deficiencies, the standard IC diet can cause unintentional weight loss. While society usually glorifies weight loss, in the case of those with IC weight loss may not be healthy, wanted or needed.

Unintentional weight loss is another sign of someone having potential nutrient deficiencies that must be addressed.

Food Fear & Anxiety

Because the link between food and pain is so strong, many people with IC develop fear of foods and eating along with anxiety around eating. This is totally understandable!

However, sometimes fear and anxiety can walk the fine line of developing into an eating disorder. That’s why when we work together, we find a wide variety of foods you can eat without causing flare ups and dismantle any fear and anxiety around food.

Now, on to the good news about what I've found in healing my own IC and working with clients who have IC.

The Real Causes of IC Flares (It’s Not Always Food!)

Unpopular opinion coming: most IC flares aren’t triggered by food.

There, I said it.

What triggers IC flares?

Stress

In my work with those with IC and in managing my own IC, I’ve discovered that the leading cause of IC flares is a dysregulated nervous system, which means chronic stress.

When you live with IC, you’re under constant stress because you’re always worried about:

• Having a flare

• What you’ll do if you have a flare

• Where’s the closest bathroom

• What if you have to pee and can’t find a bathroom

• What do your friends and family think about you going to the bathroom so much?

This base stress level is always there, which compounds any other stresses in your life.

What about if you don’t feel stressed? Your nervous system may still be dysregulated, and your body stuck in fight, flight, or freeze mode. 

The second most common root cause I see for bladder symptoms like IC still isn’t related to food.

Pelvic Floor Dysfunction

The pelvic floor is a group of muscles that support your bladder, uterus/prostate, and rectum. These muscles have to relax for you to go pee or poop. In some people, they keep getting tighter and tighter, which can cause many of the same symptoms as IC.

If your pelvic floor isn’t functioning correctly, changing the foods you eat won't relieve your symptoms. That’s why I talk about the pelvic floor with my clients.

A Combination of Things

Your IC could also be due to a combination of all of these things - stress, pelvic floor, hormones, and more. That’s why it can feel difficult to get relief from IC symptoms. And, your doctor can’t cover all of these issues in the 13 to 24 minutes allotted for your appointment.

That’s why you need to work with someone who will take a holistic approach to working with you to improve your IC symptoms.

Breaking Free: A Smarter Approach to Managing IC

I know you just want the pain and symptoms to stop. That’s why I created Road ToRemission. We take a holistic approach to getting relief and healing from IC. Road To Remission has both group and one-on-one components so you get the guidance and support you need from someone who understands what you’re going through.

It’s time you got your IC under control. Learn more about Road To Remission and get started today.