"Bringing the nations leading researchers, clinicians and advocates directly into the homes of patients in need."
http://www.2006icpatientconference.com

DIET AND IC
The first validated research study proves that diet can negatively affect IC patients.  

Speakers: Dr. Barbara Shorter, RD
Moderator: Jill Osborne, M.A. President & Founder
Interstitial Cystitis Network, Santa Rosa, CA USA
http://www.ic-network.com

Event Date & Description: June 27, 2006 - 2006 IC & PBS On-Line Patient Conference

INTRODUCTION

Welcome to the sixth special event in the 2006 IC & PBS On-Line Patient Conference, the only free lecture series available to interstitial cystitis and painful bladder patients on the web. Our goal is to bring the worlds best researchers, clinicians and activists directly into the homes and offices of patients who are unable to travel and/or afford to attend a national or regional conference. Most patients have no choice but to stay home and hope to read transcripts or watch DVD's of the various IC events. The internet, however, changes this dynamic. We can now bring the conference directly to thousands of patients at one time. This would not happen without our generous sponsors, including: Akpharma (Makers of Prelief), Desert Harvest (Makers of DH Aloe), AstraTech (Makers of the Lo-Fric Catheter) & Algonot (Makers of Algonot, Cystoprotek & Prostaprotek). We thank them for their support and encouragement of IC patients throughout the world. 

Tonight's lecture will share one of the most important research developments in the IC community in recent years. We've all known, anecdotally, that diet has the potential of helping or hurting some IC patients, but many physicians choose not to provide diet information to their patients because they didn't have a "research study" backing this up. That is, until last month.

Dr. Barbara Shorter is a co-author of a new research study that shows that diet does make a difference.Dr. Shorter is an RD and is currently the Director of the Didactic program in Dietetics in the Dept of Nutrition at Long Island University- CW Post Campus. But what's even more exciting is that Dr. Shorter is also an IC patient, one of many professionals working hard to help us find answers for the many mysteries of IC.Welcome Dr. Shorter.

Dr. Shorter - Hello and it's a pleasure to be here!

PRESENTATION

Jill Osborne  - Tell us how you first got involved in IC?

Dr. Shorter – It was over 20 years ago and I remember it well. One afternoon while I was waiting for a train, I had a terrific bout of pelvic pain. I didn't know how I was going to get home. The pain was excruciating. Thinking about that day, I remembered I had a tuna sandwich on rye bread and coffee for lunch.

I went to a doctor who conducted a urinalysis, subsequently did not find any bacteria and did not have any suggestions to mitigate the discomfort. After a while, when the episodes of pain were relentless, I went to a University hospital in NY city, where a urologist performed urodynamic testing and said the results were unremarkable. He didn't know very much about IC at the time. He suggested that I do biofeedback.

I still wasn't feeling any better so I went to another urologist. (Like so many other patients, I was doctor hopping.) This doctor had me undergo a cystoscopy. He found Hunner’s Ulcers. He suggested that it would be to my advantage to see an IC specialist. Finally, I was fortunate enough to be referred to Dr. Robert Moldwin who, after a complete examination, prescribed Elmiron and Elavil and, eventually, I started to feel better.

Prior to seeing Dr. Moldwin, I didn’t realize the connection between foods and beverages and my flares. I wanted to do some research – on myself. Because I am registered dietitian, I felt that I had enough knowledge to design my own Elimination Diet so that I could determine which foods contributed to flares. I was very cautious with my food and beverage intake for a long time and was able to determine which were problematic for me.

Because all of the dietary advice for IC patients was as the result of anecdotal information, I approached Dr. Moldwin and discussed the idea of doing a research study on the effects of foods, beverages and supplements on the symptoms of IC. Of course, he was most encouraging and supportive. He's an exceptional doctor and was very helpful to me not only as a patient but also as a researcher. He introduced me to Dr. Leslie Kushner. She's an extraordinary woman and a wonderful mentor.

We decided to develop a questionnaire. In order to devise a good survey instrument, we had to present it to a panel of IC experts who could evaluate it for content validity. Following that, we gave it to patients to test for clarity and readability. Finally, we tested the questionnaire for reliability. Once we were sure that we had a valid, reliable questionnaire, Dr. Moldwin distributed them to his female patients who met the NIDDK diagnostic criteria for IC. These patients also completed the PUF questionnaire and the O'Leary- Sant Scale. Subjects who participated in this study probably had moderate to severe IC.

We found that 90% of the patients who answered the questionnaires did feel that the consumption of certain foods, beverages and supplements caused an increase in urinary frequency, urgency and pain - in general, a worsening of bladder symptoms. Our survey included a list of 175 foods, beverages and supplements and asked patients to rate the foods if they worsened, had no effect or if they improved bladder symptoms. We found that there were foods, beverages and supplements that were most definitively problematic for IC patients.

Jill Osborne – What foods caused the most problems for IC patients??

The greatest offenders that patients reported to have worsened their IC symptoms were:

  • Coffee, tea
  • alcoholic beverages
  • tomato and tomato products
  • citrus fruits and juices
  • spicy foods
  • chili
  • most artificial sweeteners
  • Also on this list was: vinegar, MSG, hot peppers, all types of sodas, Mexican food

Jill Osborne - Did the survey distinguish between decaf and regular coffee??

Dr. Shorter - Yes, we had both listed. Interestingly enough both decaf and regular coffees were significantly problematic.

Jill Osborne – Which spices were the most irritating??

Dr. Shorter – We were careful to keep the list of products in the survey to a limited number, so that subjects would have the patience to complete our questions.  When questionnaires are too long, people tend to lose interest.  There are thousands of foods and spices and could not possibly list them all.

Spices were generalized into the category of “spicy foods.”   Additionally, we listed items such as hot peppers, chili, mustard, vinegar etc.  Spicy foods, chili, hot peppers, vinegar and horseradish were found to worsen bladder symptoms for our participants.

Jill Osborne – How did tomato products rate? (tomato juices, pasta sauces, tomato pastes, etc. etc.)

Dr. Shorter – Again, to keep the list of food items reasonable, we did not individualize all tomato products.  They were listed as tomatoes/ tomato products and low acid tomatoes. Yes, these were found to be problematic for most patients.

Jill Osborne – How about foods that were less offensive but still on the list?

According to our study population, foods that were slightly less offensive included:  strawberries, grapes, grape juice, prune juice, radishes, onions, scallions, sauerkraut, salami, bologna, pastrami, sausage, chocolate, catsup, mustard, certain salad dressings, pizza and Chinese food.             

Jill Osborne – Which foods rarely affected bladder symptoms (i.e that your study found to be more IC friendly)??

Foods that rarely affected bladder symptoms in our patients included:  blueberries, bananas, cantaloupe, figs, honeydew, raisins, watermelon, asparagus, avocados, green beans, beets, broccoli, brussel sprouts, carrots, cauliflower, cucumbers, eggplant, peas, spinach, squash, zucchini, white and sweet potatoes, legumes, eggs, beef, chicken, pork, lamb, fish, shellfish, nuts, rice, breads, milk products, pretzels, popcorn, cookies, pastries, puddings and cakes (non-chocolate). Most of the products in the meat group, the fresh meats – not smoked or deli-meats - such as beef, lamb, chicken, eggs, pork, veal,seafood and fish were IC friendly.

Jill Osborne - I'm not surprised that you found eggs to be more IC friendly. I’ve never understood why eggs were put on a few of the IC diets that are circulating through various doctors offices. Egg whites are natural acid reducers. How about milk products?

Fresh milk products such as low fat milk, whole milk and Lactaid milk did not exacerbate bladder symptoms.  Puddings (non-chocolate) were also okay.

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Jill Osborne - How about fruits? What were the most IC friendly fruits in general. We usually tell patients to start with pears and then try a mild apple, move in to the melons, etc. etc.

Dr. Shorter - Remember if fresh fruit doesn't work for you, try it cooked or canned. Of the fruits, pears were definitely the most tolerable. Blueberries, watermelon, figs, prunes, honeydew ,raisins, apricots, berries, cantaloupe, blackberries, cherries and peaches do not seem to affect bladder symptoms of most IC patients.  Even bananas tested okay, although, they are on other IC Diet lists that suggest you should avoid them.

One thing we have to keep in mind is that sometimes a fruit won’t present problems if you have it on occasion, but, if you have it often and/or increase the quantity, it can worsen bladder symptoms.  So, it's about quantity. If you want to try a fruit, start with a small amount first and see how you do. It helps to use a voiding diary to keep track of your symptoms and frequency so that you can determine if a particular fruit will affect you.

As a nutritionist I want to remind you that it's important to eat a variety of fruit, not just the same fruit all the time. Different fruits provide different nutrients.  Even if we were not worrying about IC, there could be other harmful chemicals in small amounts in fruits that could be a problem when consumed in excess. Most foods have minute amounts of toxic substances, but our bodies can tolerate small amounts.  Years ago, we had a problem with imported Chilean grapes.  They were contaminated with cyanide. So if you ate a lot of grapes at that time, you could have consumed a harmful amount of the chemical.  Another very important concern years ago was ALAR, a chemical used to precipitate the ripening of apples for harvesting. It was discovered that ALAR was a carcinogen. Eating too many of these apples or apple products could have presented a problem to the consumer.  So, maintaining a varied intake is very important for a healthy and nutritious diet.  

Getting back to fruits, try making yourself an IC friendly fruit salad with those fruits that work for you. Start with pears, sweet apples as opposed to sour apples, melon, blueberries etc. and you can enjoy fruit again.

Please remember that we are all very individual with our fruit tolerances. You've got to do the work to determine which foods are problematic or beneficial for you.

Jill Osborne - What about patients who simply refuse to give up a problem food... even if they know it will make them worse?

Dr. Shorter - In our study, we asked IC patients if they had eaten foods which they knew would worsen their bladder symptoms. 88% of the respondents did eat foods that were problematic.

Jill Osborne - Did that surprise you?

Dr. Shorter - Yes and no. On one hand, we know that the compliance rate for various types of diets is extremely poor, but, on the other hand, with most diets you don't see the consequences of a problematic food immediately. With IC, we can see the consequences very soon after consumption. So, it surprises me that people who can develop a worsening of their bladder symptoms feel that enjoying certain foods and beverages is more important to them than increasing their level of pain.

Jill Osborne - Either that or it's an addiction to a food. What advice do you have for a patient who is addicted to caffeine?

Dr. Shorter  - If you are really concerned about your pain, you must force yourself to modify your habits. For instance, I switched to Postum. You should try the various coffee substitutes until you find one that you like. Some substitutes are Teecino, Kaffeeroma, Pero, and there are others. My favorite is Postum. I’m not saying that you will always find the perfect substitute, but you have to determine your priorities.

Jill Osborne - How long does it take for a patient to react to a bad food?

Dr. Shorter - It could be as short as 20 minutes or as long as two days. It varies and depends on the patient, the food and the amount of the food.  What is also interesting is that some people have indicated an almost instantaneous reaction to certain products like alcohol.  The beverage doesn’t even have time to digest and yet symptoms worsen.  This is an area in need of further study.

Jill Osborne - How many patients took the survey?

Dr. Shorter – 125 patients.

Jill Osborne - Where can a patient get a complete list of the foods that were irritating in your survey?

Dr. Shorter - I can certainly send a list of foods, but I want to caution you about being overly concerned with food lists. Diets have to be individualized and different people definitely respond differently to foods. I know that some IC patients cannot touch tomatoes but some, like me, can consume small amounts of tomatoes with no problems.

You really have to look at yourself and be a detective. Keep track of what you're eating, how you feel and how often you urinate. There's no other way to do this. YOU HAVE TO DO THE WORK and you have to test yourself by introducing foods to see how they affect you. Just remember to start with small quantities of any risky food and wait three days to introduce another risky food.

Jill Osborne – What about preservatives?

Dr. Shorter - They can be a problem for some people but this is a perfect example of the fact that IC diets must be individualized. Preservatives may bother some of us but not others. I want to stress that if you have a lot of fresh veggies/ fruits etc. and you eat them raw or slightly cooked, please vary your selection. We prefer to stay away from packaged and processed foods as much as possible. This way you will not be exposed to as many preservatives. There are numerous foods that are nutritious, fresh, and available.  However, if for any reason fresh is not possible for you, vary your processed foods.

Jill Osborne – How did Splenda rate?

Dr. Shorter - It doesn't seem to be a problem as compared to the other sweeteners.

Jill Osborne - Amy asks about KAVA coffee as a low acid substitute.

Dr. Shorter - If it doesn’t worsen your symptoms, then, drink it….. that is  basically what matters.

Jill Osborne – We have several questions about herbal and green teas. Were those tested?

Dr. Shorter - We did not put those on our list but I've heard through others that green tea is problematic, while some herbals are not. Peppermint, chamomile and blueberry teas may be worth trying.

Jill Osborne - Julie asks the question about acidic versus non acidic foods. Is it really that's the problem??

Dr. Shorter - We don't know that it's the acid that is the problem and let me explain why. When foods are acidic in nature, like certain citrus fruits, they become basic (alkaline) when they are metabolized. Foods that are basic (alkaline) before metabolism such as meat, fish and poultry products are usually not a problem for IC patients even though they become acidic when they are metabolized.  In fact, I read a study published in the British Journal of Urology, where Dr. Fenster instilled acid directly into the bladders of IC patients and found insignificant changes in bladder pain.  So clearly we have a lot more that we need to study to try to determine why foods bother an IC bladder. It's very complex.

Jill Osborne - Yate says that she's had violent IC flares from strawberries. Your thoughts?

Dr. Shorter - It could be a chemical from the soil where they are grown or something in the packaging. It's hard to know what it is that's bothering her specifically. Strawberries, in our study, were not highly offensive for most of our subjects. Yes, they bothered some people... but they weren't that high on the list.  Again, if a food bothers someone, she should avoid it.

Jill Osborne – Did you include cheeses and nuts in the study?

Dr. Shorter – Walnuts, almonds, peanuts, peanut butter and other nuts did not worsen symptoms in most of our survey participants.  We did not include cheeses in our questionnaire.

Jill Osborne – Can you suggest any IC friendly breakfast ideas?

Dr. Shorter - To begin with, be careful with the highly fortified cereals because they tend to be problematic for IC patients. Start off with eggs, toasted bread with soft margarine or a little butter, pears, or something like that, maybe hash browns. Stay away from the citrus fruits and juices if they affect you. Oatmeal with some berries and low fat milk are a good choice. Just make sure that you have a variety of proteins, carbohydrates and healthy fats, so that you have balanced meal.

Jill Osborne - Eating out is always difficult for patients who travel frequently. What ideas do you have for ordering an IC friendly meal in a restaurant?

Dr. Shorter – Try grilled or broiled chicken, fish, fresh meats, potatoes or rice and the IC friendly veggies and fruits. Drink water or low fat milk.  Watch the salads and salad dressings. These can sometimes contain ingredients that don't agree with IC patients.  There are many nutritious IC friendly foods.

Jill Osborne - Amber raises an important point. “What if you stick to the diet but see no change in your symptoms?”

Dr. Shorter - You have to look at other factors in your life too. What medications are you taking? Are you taking weight loss products? Which soaps do you use when you washyour underwear? Do you wear cotton undergarments? Do you use white, unbleached toilet tissue? Do you use feminine deodorant products? What dietary supplements do you take? Do you use a diaphragm? Are you often constipated? There are a lot of variables that you have to look at, not just foods. Some people are even affected by cold seats. I find that cold seats trigger my IC.

Jill Osborne - Will you be writing the research up for IC patients??

Dr. Shorter - Yes, we're still analyzing the data, but we will be writing it up and submitting the article to a journal.

Jill Osborne - What advice do you have for a patient who is just afraid to eat??

Dr. Shorter - I think that the patient should see a registered dietitian (RD) so that she can discuss all of the food groups and plan an Elimination diet.  The patient may need help to determine all of her safe foods vs. risky foods. She should work with an RD to develop an individual meal plan. The patient will benefit from the assistance of professional – IC diets are unique to each one of us.

Jill Osborne - And remember that fresh foods tend to be safer than manufactured foods with lots of chemicalsand additives. Remember that some of the foods that are bad for IC, are good for IBS and vice versa. Any suggestions for someone struggling with both conditions??

Dr. Shorter – With IBS, just like IC, you have to treat the symptoms and work with the person individually. Different people have different responses to foods. Some can't tolerate fats, corn or wheat so you need to work with a professional to develop a meal plan that will address these issues.

Jill Osborne - Flannery asks about foods containing gluten. Has there been any connection between IC and celiac disease?

Dr. Shorter - I haven't read about a connection, not to say that there isn't. I don't know.

Jill Osborne – Would food allergy testing be helpful??

Dr. Shorter -  Allergies to foodsand food intolerances are uniquely different and can certainly cause various types of discomfort. A patient could benefit from talking with an allergist and nutritionist.

Jill Osborne - Why is the IC diet so similar to the diet used to prevent migraines?

Dr. Shorter - Migraines are often caused by foods high in tyramine and the IC diet usually excludes foods that are high in tyramine. We're not sure if it is actually the tyramine that is triggering the problematic symptoms, but it's a possibility. We need to do more research to determine that.

Jill Osborne - Are there any oils which are more IC friendly to cook with?

Dr. Shorter - What comes to mind is that certain olive oils are more acidic than others. For instance, the virgin olive oils which are very limited in processing, have more acid in them. Basically, most of the oils seem to be okay. But, for you, if the virgin oil is a problem then use the regular olive oil. The most healthy oils that we suggest people use are the olive and canola oils.

Jill Osborne – A patient asks for your advice on what she can say to doctors who say that the IC diet is unnecessary?? In other words, who don't believe that diet is important?

Dr. Shorter – We are working with research that will help us to validate what, in the past, we felt was true. For years we’ve heard anecdotal reports from thousands of patients who said that various foods increased their bladder flares. This study will help to confirm that certain foods tend to exacerbate bladder symptoms in IC patients.  You will be able to refer to it when it is in print. We're hoping to use this data as a starting point to do other studies related to foods and IC.  There is a tremendous amount of research necessary to answer many questions about the various components of foods, beverages and supplements and IC flares.

Jill Osborne – Why do some laundry soaps bother the bladder??

Dr. Shorter - There are chemicals in the soap that are irritating. What I generally do is use detergents that are FREE detergents with no perfumes, dyes, etc. etc. and I rinse my cotton underwear three times and I do not use fabric softeners, etc.

Jill Osborne - Let me just say that we've known, for many years, thesoaps have the potential of bothering some IC patients, particularly patients who struggle with urethral and/or vulvar discomfort. So, if you look at the ICN Patient Handbook, we have several stories and self help tipson soaps, including one called "The Case of the Poison Underwear.” I have many memories myself of having bad flares after putting on a pair of underwear washed in Cheer. http://www.ic-network.com/handbook/.

Jill Osborne -Soy products??? Tofu??

Dr. Shorter - They vary depending upon whether or not they are fermented, and how they are prepared. IC patients have to try them to see if they are problematic. I personally have no problem with soy.

Jill Osborne - Rice milk?

Dr. Shorter - Rice milk is a good alternative to soy milk if you're sensitive to soy. Be sure it is enriched with Calcium and B12 if you are using it as a milk substitute.

Jill Osborne - IC friendly dessert ideas??

Dr. Shorter - Nutritionists always recommend desserts like fruit, but also there are simple cookies, for example, vanilla snaps or wafers, puddings – even plain cakes and pastries. These tend to be safe. Unfortunately, some people have to stay away from chocolate. Although we do not recommend junk food, in moderation, on occasion it's okay.

I want to point out that when we talk about healthy eating habits, we trynot to tell people that they can never ever, ever have a particular food because then they obsess about it. We explain that sometimes a person (who is not on a therapeutically restricted diet) can have small amounts of a food that she has a desire for. We have found in the past that seriously restricting foods can lead to binge eating and eating disorders.

Jill Osborne - If you plan on eating a risk food, can you recommend any suggestions??

Dr. Shorter - Make sure it's at a time when you can be home or close to home just in case you have a problem. And, remember that the quantity of a particular food can make a difference. Try to limit the amount of the suspected food that you eat. One of the things that I do is that I fill up on something that is safe and then, when I’m almost finished eating, have only a tiny portion of the risky food. Then, I can end up with that wonderful flavor in my mouth.

Jill Osborne - Is there such a thing as an IC safe chocolate?? Bev Laumann says in her book that a semi sweet or bitter chocolate may be more IC friendly than a mass market milk chocolate which tends to have more fillers and additives in it.

Dr. Shorter - Yes. Carob is not a problem and remember, some people don’t have a problem with chocolate.

Jill Osborne - Do you see any benefits to juicing?

Dr. Shorter - Personally, I don’t see any benefits to juicing if the fruit pulp and fiber are removed. Most juicers take away the pulp and fiber. These are beneficial parts of the plant. There are often many nutrients and phytochemicals in the skins and pulp of fruits and vegetables. People tend to get more nutritional value from a whole fruit or vegetable rather than just the juice.  Additionally, whole fruits and vegetables have more satiety value. You feel fuller.

Jill Osborne – Do you have any position on small amounts of regular sugar in our IC diets??

Dr. Shorter - I feel that small amounts of sugar are fine for anyone, particularly if it makes a nutritious food more palatable. One problem is that most people don’t consume sugar in moderation.  They tend to add many unnecessary calories by ingesting too much sugar.  In many cases, if we could only practice moderation, we could enjoy almost anything.

Jill Osborne - Last question of the night. What suggestion do you have for someone who used to take a B supplement but can't now that they have IC. The B supplements are particularly irritating to an IC bladder for SOME patients?

Dr. Shorter - Vary your diet and meet with a registered dietitian so that you plan meals to include all the food groups. You get B Vitamins in meats, fish, poultry, whole grain products etc. A varied and balanced diet will provide you with the B Vitamins you need.

My take home message to everyone: If you're worried about your diet or are afraid to eat many foods, find a registered dietitian to help you follow and elimination diet.  She can help you to select a balanced, healthy diet that you will enjoy and still find non-irritating to your bladder. You should not have to be afraid to eat when you have IC. There are many wonderful foods that are available to you.

Jill Osborne - Thank you Dr. Shorter for your time tonight! We so appreciate your efforts, your wisdom and, most of all, the fact that you are an IC patient who has made a difference for all of us!

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