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 

 **Please SHARE using the links below!**

Tuesday, September 4, 2012

Vulvodynia and Interstitial Cystitis

Vulvodynia and Interstitial Cystitis
What is Vulvodynia? Vulvodynia, or chronic pain in the area around the vagina (vulva) is often seen in interstitial cystitis patients. The characteristic symptoms of burning or irritation of this sensitive area can crossover with those of IC. Women with vulvodynia can find sitting for long periods of time and sexual intercourse extremely uncomfortable. The condition is considered chronic with symptoms lasting years.

The Low Oxalate Diet: Many patients report some relief when following a low oxalate diet. Oxalates are tiny molecules found in various foods that generally pass through the body unabsorbed. In some patients, however, oxalates can pass through the intestinal barrier and the molecules accumulate causing inflammation in various areas of the body. To date, researchers have not proven that oxalates play a part in vulvodynia; however I truly believe that patients know best and the researchers need to keep looking!

Finding Personal Trigger Foods: If you have vulvodynia in addition to IC and you want to try to eliminate oxalates to see if it helps your symptoms, you can combine both the low oxalate food list with the IC Food List. Compare the lists, crossing out foods on the IC Food List that are high (H or VH) and moderately high (M) in oxalates. This will give you a basic diet to follow to see if your symptoms improve. After some time, you can experiment with adding some of the M foods back in to see if you react. The important thing is to develop your own, personalized trigger food list and not eliminate foods unnecessarily.

If you need to combine a low-oxalate diet with an IC Diet, I suggest that you consult a dietitian. I have helped many IC/vulvodynia patients over the years. If you are interested in a consultation, please email me at If you would rather see someone in your area, please email me and I can find someone to help you. 

Treatments for Vulvodynia: Medical treatments include tri-cyclic antidepressants and antihistamines to help reduce pain and inflammation. Vulvodynia patients may also find relief from creams such as lidocaine that temporarily numb the area. Surgery should be considered a last resort and may include removal of the painful areas of the vulva.

Additional Lifestyle Changes: Many patients find they can treat their symptoms with various lifestyle changes. recommends cold compresses to the affected areas, avoiding tight fitting clothing, avoiding hot tubs, limiting excessive personal hygiene, and paying attention to other triggers such as personal hygiene products and toilet tissues. 
Some people with vulvodynia take warm baths with a handful of Epsom salts in it to relieve their symptoms. You may also want to use personal lubricants. I LOVE the Desert Harvest Aloe Gele'! It is actually the reason why I decided to write this article! I keep it in the refrigerator since the coolness also seems to help. Desert Harvest also has a Desert Harvest Aloe Gel that doesn't use any preservatives. Again, an excellent product that has helped many IC and vulvodynia patients. 

Desert Harvest Gele
[More product information: Both Desert Harvest's All-Natural Aloe Vera Personal Gel and Desert Harvest Gelé contain all of the anti-inflammatory,pain relieving, and healing properties of the aloe plant without paraben preservatives. The difference between the two is the concentration. DH Gelé starts with 10X concentrated aloe vera juice, while the DH Personal Gel uses 1X juice, which means the Gelé is more therapeutic and healing. The Gelé is 95% natural with small amounts of manmade preservatives. The Personal Gel costs a bit more because it uses 100% botanical preservatives. Many thanks to Desert Harvest for their support of the Confident Choices mission!]

For more information and personal support check out the Interstitial Cystitis Network's Vulvodynia Support Forum

Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

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

 **Please SHARE using the links below!**