The following post was written by Destiny Toyooka, Dietetic Intern and edited by Callie Krajcir, MS, RD.
Interstitial Cystitis (IC) is a chronic bladder condition resulting in recurring discomfort or pain in the bladder or surrounding the pelvic region. Both men and women can be affected by IC, of all ethnicities. Early prevalence research suggested that IC ranged from 1 out of every 100,000 to 5.1 out of every 100,000 in the general population; but updated epidemiologic research conducted in 2006 suggests that up to 12% of women may have early symptoms of IC.
Unfortunately, the causes of IC are still unknown and are often mistaken for a urinary tract infection (UTI). Its diagnosis is often made only after excluding other urinary bladder causes. There have been a few research studies that have been conducted in the past that can steer us in the right direction for treatment. Even better, a few of these studies were focused on the link between food/beverages and IC.
ICA INTERSTITIAL CYSTITIS AND DIET SURVEY (2004)
Some of the earliest findings discussing the link between food and IC stems from self conducted surveys taken by patient groups in 2004. The Interstitial Cystitis Association (ICA) has surveyed patients a number of times throughout the years and concluded that by making changes in diet, some patients were able to reduce symptoms. The IC and Diet survey was conducted December 1, 2003 - February 12, 2004. Approximately 560 patients responded to the mail-based, self report questionnaire. The information received had provided some of the first insights into the relationship with food and IC symptoms.
There are some limitations with the way this study was designed. Mail-based surveys require many extra steps, including the self-administered nature of the questionnaire. Someone who is diet-sensitive may have been more motivated to complete and return the survey than someone who is not diet-sensitive.
Also, studies focused on diet don't examine other possible causes of IC symptoms such as stress, hormones, allergies, etc. However, the findings of the questionnaires are still valuable for the IC community in that they highlighted the effect of diet on controlling or reducing IC symptoms.
LONG ISLAND STUDY (2007)
Another study linking diet to IC symptoms was conducted in 2007 by Robert Moldwin, MD, and Barbara Shorter, EdD, RD, CDN. This questionnaire was given to 104 IC patients. The questionnaire presented general questions and a list of 175 different food and beverages, asking whether or not or how each item affected their symptoms. Patients also completed two standard IC assessment tools—the O’Leary-Sant Symptom and Problem Index (OSSPI) and the Pelvic Pain Urgency/Frequency (PUF) Questionnaire. The results had shown that 90% of the women reported that certain foods and beverages had bothered their symptoms.
The results of the study had shown some of the most problematic foods being coffee, tea, soda, alcohol, citrus fruits and juices, artificial sweeteners, and hot peppers. Limitations of this study are similar to those of the previously discussed study, including small sample size and the inability to conclude that diet is 100% the cause of the IC symptoms.
ICA COMPLEMENTARY AND ALTERNATIVE MEDICINE STUDY (2009)
The ICA had conducted another study in 2009 involving a survey sent to approximately 2,100 people to study complementary and alternative medications (CAM). The results of the survey showed that diet was at the top of the list of helpful CAM treatment. The survey had also found that newly diagnosed IC patients found diet modifications significantly more helpful than long-term IC patients. It wasn’t discussed on how extreme the diet modifications had to be, whether it be looking and eliminating individual food triggers or strictly eliminating all bothersome foods on the strict “IC diet” food list. While doing an elimination diet seems to be a more achievable process, this survey does not account for those who are overwhelmed by the diet list and believe they must live on a strict diet for a long period of time.
USF IC & DIET STUDY (2010)
In 2010, an important discovery was made for the IC community. A cross-sectional study conducted by the University of South Florida found that the IC diet does NOT have to be as restrictive as once believed. A web-based questionnaire was created asking members of the ICA about the effects of 344 foods, beverages, and supplements. Almost 600 patients responded—and though nearly all (96%) answered that certain foods and beverages made their IC symptoms worse. Respondents also reported that they did not have a problem with most of the items on the questionnaire.
The conclusion that can be drawn from this study is that IC patients may only need to avoid a handful of foods and beverages, which are actually foods that are mostly acidic. This confirms that everyone has their own dietary triggers, ones that may be different from another. The study had also concluded that IC patients may be able to reduce food sensitivities by consuming baking soda or Prelief before eating a trigger food.
MAPP FOCUS GROUP FINDINGS (2015)
Another study conducted by researchers with the National Institutes of Health (NIH) Multi-disciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network involved eight focus groups of women with IC . There were 57 participants ranging from the age 19-77, both newly diagnosed and those who had struggled with IC for several years. The focus group had many discussions where food was the main topic. Similar to the other studies conducted over the years, the same bothersome foods were brought up, food and beverages that were high in acidity along with certain multivitamins and Vitamin C supplements. Everyone had their own different dietary triggers but the same most bothersome foods seems to be similar with the majority of IC patients. These studies were significant in finding different treatments for IC involving diet modifications.
A note from Callie: We still have a long way to go with IC research - other treatment methods still need to be explored and more studies need to be conducted to further understand all other triggers that could not be dietary. BUT, this body of research shows that conducting an elimination diet to identify unique dietary triggers should to be the first line of action. In fact, diet modifications are recognized as a first-line treatment method by the American Urological Association. A recommendation I'm sure wouldn't have been possible without these research studies.
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Bassaly, Renee DO; Downes, Katheryne MPH; Hart, Stuart MD, “Dietary Consumption Triggers in Interstitial Cystitis/Bladder Pain Syndrome Patients,” Female Pelvic Medicine & Reconstructive Surgery, 2011: Jan/February; 17(1): 36-39.
Insterstitial Cystitis (2020, February) Retrieved January 28, 2022 from https://www.cdc.gov/ic/index.html
Interstitial Cystitis Association (2020). Retrieved January 28, 2022 from https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/snapshot-of-research-on -ic-and-diet/
“Effect of comestibles on symptoms of interstitial cystitis,” Journal of Urology. 2007 Jul;178(1):145-52.