Interstitial Cystitis Diet? Trust Your Intuition!

Oh my gosh, today there was a big discussion on one of my dietitian lists about gluten-free diets being used for IC. Although most people appreciated my level head when it came to the topic, it still frustrates me when people are so quick to promote something that has NO substantial research behind it. One dietitian said erroneously that 80% of IC patients have gluten sensitivity. When challenged, she couldn't substantiate that number. Well, of course she couldn't. It IS NOT TRUE!

I wrote about this in April of this year (Gluten-Free Diet for Interstitial Cystitis/Painful Bladder Syndrome), and still refer to it often when answering posts at the Interstitial Cystitis Network and on my facebook pages, Trust me, I understand the desperation that makes people believe that if they change their diet dramatically, they could cure their IC symptoms. But in my 14 years of dealing with thousands of IC patients, I just have not seen it!

I wanted to update the topic because I had to do more research to have this "discussion" with the dietitians. To be honest, nothing has changed. The ONLY statistics I could find are from an online poll done by the ICA:

 "More than 1,000 interstitial cystitis (IC) patients completed an Interstitial Cystitis Association (ICA) quick poll on gluten sensitivity and celiac disease:

• 12% of IC patients reported being diagnosed with celiac disease, a gluten-intolerance condition.
• 15% of IC patients stated that foods with gluten bothered their IC symptoms."

Keep in mind, that this was a self-reported survey (far from scientific) and these people may or may not have already been influenced by the flood of fad diet information out there about gluten in our food supply. And, although this page on the ICA states that there is research pending, I am having a hard time putting any value in a study that only includes 39 people when I have dealt with thousands of patients over the past 14 years. 

That being said, I know we have a LONG way to go with IC and diet research. This is made difficult because IC is likely not one disease, but several that we have lumped into one category. Treatment, including dietary treatment, is extremely individual.

My current recommendation with patients who come to me wanting to try a gluten-free diet is to have them try it for two weeks. If they do not have some relief during that time, we go back to eating foods that have gluten in them. It is never a good idea to eliminate entire food groups from your diet unless it is truly a medical necessity.

I believe in most patients' abilities to trust their own intuition as far as diet is concerned. In reality, bread and other gluten containing products are nearly always reported by patients to be some of the least bothersome foods for interstitial cystitis/painful bladder patients. Instead, research has shown the most bothersome foods for interstitial cystitis/painful bladder patients to be: 

• Caffeinated beverages
• Citrus fruits and juices
• Alcoholic beverages
• Carbonated beverages
• Tomatoes
• Foods containing hot peppers
• Certain artificial sweeteners
• Pineapple/pineapple juice
• Cranberry juice
• Horseradish
• Vinegar
• Pickled herring
• Soy

For those of you more interested in this topic, I have a book written for dietitians that explores the research in more depth than my books for patients. If you don't have it already, you might be interested in Interstitial Cystitis: A Guide for Nutrition Educators:

I KNOW we have a long way to go with reseasrch on the IC Diet, but we are not going to get anywhere by continuing to disseminate poorly researched theories. Help pass the work. Send this link to your IC friends and post it in your groups. And PLEASE don't eliminate entire food groups from your diet unless you are really helped by it. An IC Diet is not "one-size-fits-all," but rather an individualized diet that can be determined by a deliberate process of trial and error. If you need help determining your personal trigger foods, please don't hesitate to contact me at NutraConsults@aol.com for a personal consultation.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

Need More Recipes? Check Out A Cookbook for IC and OAB!

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices^®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices^®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators 

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