Thursday, September 20, 2012

Interstitial Cystitis Diet? Trust Your Intuition!

Baking Bread
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 for a personal consultation.

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate 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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  1. Excellent post! It amazes me how many people are just going gluten-free to lose weight as well. I've been tested and have no problems with gluten. Bread is also a mainstay of my diet since I also have gastroparesis, which has severely limited my diet...more than my IC did. However, I have a daughter with Celiac Disease and I get so frustrated when people assume that she's not eating gluten to stay thin. If they had only seen how emaciated she was BEFORE her diagnosis! She finds it easier to tell people that she has an allergy, they seem to understand that better. We're looking forward to going to Appetite for Awareness in Philadelphia on Sunday. It will be a treat for her to see foods that she can eat safely!

  2. Carolyn, I appreciate you sharing your story. You and I both know how serious celiac is, and how hard it really is to follow a gluten-free diet. My IC patients have so many other things that they have to deal with, I hate to see bad information confusing what we know (and many times don't know) about interstitial cystitis and diet. Hugs to both you and your daughter!

  3. Thank you so much for the info on gluten. I had a big allergy/sensitivity test done a few weeks ago and it came back with no reaction to gluten, but a huge reaction to cows milk. I feel so much better since I stopped drinking cows milk. I have read several books that said I should go on gluten free diet. I didn't want to have to give up everything! Giving up cows milk and it's related products has been very difficult. Yeah, you made my day.

  4. Jennifer, thank you for posting! I am glad you are feeling better since you are not drinking cows' milk. And yes, eat your bread. There is no reason to eliminate gluten from your diet unless you have been proven to be sensitive. Hugs to you!!!