Date: December 7, 1999
Interstitial Cystitis Network - Chat Log (www.ic-network.com)
Topic: Diet, Nutrition and IC
Speaker: Beverly Laumann, author of "A Taste of the Good Life: A Cookbook for an Interstitial Cystitis Diet."
<icnmgrjill> Welcome to the ICN Support Group meeting for December 7, 1990. Our guest speaker tonight is Bev Laumann, author of the book "A Taste of the Good Life: A Cookbook for an interstitial cystitis Diet." For those of you in Southern California, you will recognize Bev as the Orange County ICA support group leader. Bev is also one of the first IC patients on-line.. we've known each other for five years. I can say, from the bottom of my heart, that she is truly exceptional in her knowledge of IC and her commitment to the cause. Whenever I have questions, she's who I call for a second opinion! Bev, welcome to the ICN! It's great that we finally got you to come speak for us!
<BevLaumann> It's nice to be here. Thank you very much for inviting me!
<icnmgrjill> Bev has created a presentation for us that we'll go ahead and start first and then we'll take your Q&A.
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<BevLaumann> First of all I'd just like to introduce myself a bit. I'm not a doctor, a nutrition expert, or a registered dietician I'm an IC patient like yourselves. I've had bladder problems on and off most of my life but my latest round of troubles began about ten years back, in 1989. I was diagnosed with IC the following year and since then, I've attended IC support groups, talked to probably hundreds of IC patients and learned as much as I could about the disease. For three years beginning in 1994 I was very active on the IC message board at America Online and, along with Jill, was one of the first few IC patients on the internet. For the last few years I've also been the group leader of an ICA-affiliated IC support group in California.
<BevLaumann> One thing that saddens me is that my bladder problems interrupted my education. I have a severe case of IC, so I was forced to quit college rather than finish a degree in cell and molecular biology. I still enjoy researching things though. My classroom experience was very helpful in researching the information for "A Taste of the Good Life: A Cookbook for an Interstitial Cystitis Diet". I love to cook and I especially enjoy inventing new recipes, so it seemed natural to come up with a cookbook and diet guide for the IC diet.
<BevLaumann> I wrote it not from a doctor's point of view, but from the point of view of a fellow IC patient who has to cope with the way diet affects our bladders on a daily basis. It sure was helpful to me to get tips and practical advice from other IC patients when I was first adjusting to this disease, so I felt I should pass my experience along. I really enjoy sharing my bladder-friendly recipes and all of the IC diet information I've collected over the years.
<BevLaumann> Here's some diet questions that newly diagnosed IC patients often ask:
#1) What is the "IC Diet"?
It's a list of foods that many IC patients find makes their bladder symptoms temporarily worse. This list varies a bit depending on who you talk to, but in general it can be described as a low-tyramine, low-acid, bland diet.
Foods that bother us tend to fall into five categories and some foods are in more than one category. The first four categories are ones that a lot of us have problems with: acid substances (like orange juice, carbonated water, and aspirin), foods high in tyramine and histamine (red wine, aged cheese, and soy sauce), irritants such as caffeine (in coffee and chocolate) and capsaicin (in chile peppers), and some artificial ingredients (such as monosodium glutamate, aspartame, and benzoates). That's four categories.
The fifth one is very much an individual thing and varies from person to person: common allergens. Some people who are genuinely allergic to certain foods will also react with their bladders to those foods.
#2) If I strictly avoid all the foods on the list will I get better?
That depends on several things. First, not all IC patients are noticeably sensitive to food. The majority however, will feel better by avoiding the foods on the list. You do have to customize the list though. You may be allergic to wheat, and although wheat bread isn't on the list, it may bother your bladder.
Therefore you add it to your own list of foods to avoid. Or, you may find that all your IC friends can't eat watermelon... but you can. Good for you! Scratch that one off your own list of foods to avoid. Bear in mind that avoiding all these foods won't cure your IC, but may reduce the symptoms.
#3) Practically all fruit is a no-no on this diet. Will I get enough vitamin C?
Vitamin C is found in many foods, not just fruits like oranges and peaches. A good non-acidic source of vitamin C is green bell peppers. Remember that vitamin C is ascorbic acid, so vitamin C pills may bother your bladder. Some people can take buffered vitamin C. That's vitamin C that has calcium carbonate added to it to counteract the acidity. You can also "buffer it yourself" by taking Tums with your vitamin C pills. Another form of vitamin C supplement you may be able to take is Ester-C. These are usually available at drugstores. Everyone has a different tolerance level for acidic vitamin C. Some people are sensitive to the rose hips in herb teas. Rose hips are very high in vitamin C so that may be the reason.
#4) I have fibromyalgia, irritable bowel syndrome (IBS), migraines, and vulvodynia in addition to the IC. How will the IC diet affect those conditions?
Some foods with caffeine (like coffee, tea, most carbonated sodas, and chocolate) are best avoided if you have fibromyalgia because they interfere with sleep patterns. People with fibromyalgia (which is characterized by chronic muscle stiffness and soreness accompanied by "tender points") don't get the deep restorative kind of sleep their bodies need and are often fatigued. Caffeine makes this worse. Doctors disagree on the exact figures, but one nationwide survey of hundreds of IC patients found that approximately 17% had been diagnosed by their physician with fibromyalgia. The true numbers of IC patients with fibromyalgia may be as high as 60% or as low as 10%.
Irritable bowel syndrome (IBS) is sometimes called "spastic colon" and it's a functional intestinal disorder characterized by abdominal pain and bloating, often relieved by bowel movements. In one study, 27% of the hundreds of participating IC patients had physician-diagnosed IBS. People with IBS often have chronic constipation, diarrhea, or alternating bouts of each. The IC diet should improve your IBS because it avoids certain foods that irritate the colon. Some of these foods are: chili powder, red pepper, cloves, caffeine, mustard , aspartame and monosodium glutamate.
Migraine headaches are no more common in IC patients than the general population (about 2 of every ten women) but many of the foods that bring on the headaches will also irritate IC bladders. Tyramine in food has been linked to migraines. Avoiding high-tyramine foods like aged cheeses, tofu, sour cream, yogurt, and soy sauce will help your headaches too.
Women with vulvodynia (chronic pain in the vulvar area) often find that avoiding foods with a lot of oxalates helps their symptoms. The list of foods high in oxalates is not the same as the list of foods that is the IC Diet. But both sets of symptoms may improve when you avoid these foods that appear on both diet lists: chocolate, coffee, kiwis, tangerines, tofu, peanuts, and beer.
Following an IC diet isn't difficult, but if you have other medical conditions to deal with and they also have dietary requirements, it may be time to see a registered dietitian and get professional help to make sure you have a balanced diet. You can call the American Dietetic Association (www.eatright.org) for a referral to a registered dietitian in your area.
#5)I'm a vegan and I don't eat dairy products or eggs. How can I get protein in my diet if I can't have soy products?
Not all soy products are a problem for IC patients. It's mostly those that are fermented or aged, like tofu and soy sauce. However, soy is a common allergen and if you are actually allergic to soy, then even unfermented soy products may affect your bladder. Also, soy is high in phytoestrogens, plant-derived chemicals that may have the same effect on your body as estrogen supplement pills or your monthly hormone fluctuations. If estrogen tends to make your IC worse (and progesterone makes it better), then it might be worthwhile to check all soy products to see if they bother your bladder.
Some of us though, have bladders that are helped by more estrogen and are made worse by more progesterone. I know I'm in that category, and fresh soy bean sprouts don't bother me at all but fermented soy sauce does. There are other sources of protein in a vegetarian diet besides soy. I'd advise you to work with your doctor and a registered dietitian to create a diet specifically designed for you.
6) I'm invited to all these holiday parties and I am cooking Christmas dinner for the family this year...help! What can I eat and what should I watch out for?
With regard to meats, you're better off with a turkey than ham. Ham may be a problem because its smoked and therefore high in tyramine. Ham's nitrites may also be a problem. But poultry is usually safe.
Most cooked vegetables are okay with most IC people, with the exception of onions. If you have to eat a food with onions, it's better if the onions have been cooked, and the higher temperature they are cooked at the better. Therefore, sauteed onions in a stuffing are better than steamed pearl onions with white sauce. If you want a little onion flavor, try onion salt. Chives can lend an oniony flavor and are often better than green onions or globe onions. But watch out, some people can't take any kind of onions. Garlic however, is usually okay.
With the holidays comes all manner of delicious desserts, especially chocolate. Carob powder is sold in some health food stores and many markets. You can substitute it measure for measure for cocoa powder in baking.
Fruitcakes and nut breads are common this time of year. You are better off making your own than trying to buy one. Many artificial preservatives cause bladder flare-ups. Sodium and potassium benzoates, citric acid, and sulfites on dried fruit are things to be especially careful of. Walnuts, pecans, filberts, and pistachios are notoriously bad for IC bladders. Almonds and cashews are okay for many people though. If you can get away with those nuts, try making fruitcake with almonds and dates instead of the usual candied fruits and walnuts. Dates are often sold without preservatives of any kind.
Golden raisins often have sulfites on them, as does the packaged dried coconut found in most grocery stores so be careful and read labels. Even if you can't eat grapes you may be able to get away with dried currants or brown raisins (as long as they are preservative- free). As grapes ripen they become less acid and more sugary. Overripe ones become raisins.
Dried blueberries are usually okay in fruitcakes and desserts because they are very non-acidic. Again watch for preservatives. Blueberries are high in oxalates though, so they may be out if you have vulvodynia in addition to IC.
Alcoholic beverages are around a lot this time of year and because we all take so many drugs that don't mix well with alcohol, its often best to just steer clear of alcoholic beverages altogether. But if that's not a problem for you, then here's a few things to try: vodka, gin and whiskey will probably be much better on your bladder than wine or beer. Champagne is absolutely the worst, and even tonic water is carbonated (and therefore acidic). If you feel shy about not drinking alcohol at a party, ask for a glass with just plain water and then have them put a green olive in it. It looks like a vodka drink and you can wander through the room with that in your hand and no one will be the wiser.
Sobe makes a product you may be able to enjoy called Lizard Blizzard. It's a white, non-carbonated drink that tastes like coconut and pineapple but is non-acidic and has only a small amount of vitamin C. Some IC patients can tolerate it. It also has echinacea in it and some people think that helps with winter colds. If you do get a cold over the holidays, avoid pseudoephedrine (Sudafed is one brand) decongestants and stick to the antihistamines. Decongestants can make your bladder worse but antihistamines often help.
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<icnmgrjill> Thank you BEV!!!! That's a great start! That takes away my joke for the day! I was hoping that we could use our IC diet as an excuse to turn down the old fruitcakes that come from near and far! :::chuckles::: Let's take some questions from the floor!
<icnmgrjill> Melanie has the first questions! Melanie says that she's a vegetarian who was just diagnosed and now doesn't know what to do about the diet. Any suggestions for her Bev?
<BevLaumann> Okay! It's very difficult to combine the IC diet with a vegan diet. It's easier if you're just vegetarian and can eat dairy products like mild and eggs. Vitamin B-12 is something that all vegetarians need to take because there is no plant sources of it. That brings up the problem of preservatives in the vitamin pill. Some preservatives are irritating to an IC bladder and it's usually better to find a pure source.. rather than the usual supplement. In otherwords, something that you've used for years, may give you a problem now because your bladder has become more sensitive.
<BevLaumann> On veggies... all of the vegetables are pretty good for IC bladders except for the good ole acidic tomatoe.. or onion.. or italian flat beans.
<icnmgrjill> I have trouble with canned black beans..
<BevLaumann> That may be the problem, the canned beans need to be rinsed thoroughly! Protein isn't usually a problem for a vegetarian. You can get it from other sources than just meat. Vegetarians tend to rely on tofu and fermented soy products. These can be a problem, like soy sauce, miso etc. But, if you just use fresh soy sprouts that may work well! Also, lentils are usually high in protein and perfectly okay for an IC diet.
<icnmgrjill> Bev, what pasta sauces do you think work well for an IC bladder?
<BevLaumann> I would say white sauce based sauces that you make yourself, or just some flavored oil and dried herbs on the pasta. Some people can tolerate parmesan cheese while others can't. The type you get in the can is not pure parmesan, so you may be able to get away with it. But, if you get the brick of parmesan and grate it, you may find that stronger. You'll have to find where your tolerance is.
<icnmgrjill> Orr next question is about Stevia. What do you think of Stevia, the artificial sweetener!
<BevLaumann> I'm in the process of researching this now and hope to do a column on Stevia in the near future. Let me just say that the FDA is still evaluating it.
<icnmgrjill> ICN Terri wants to know about Pickled foods. She says that she ate a piece of pickled peach and that it dramatically flared her IC. She wants to know what you think about regular pickles and watermelon pickles?
<BevLaumann> If you can tolerate them, good for you! But, they are very acid because of the vinegar used in pickling. So, if you're talking about pickled onions, it will make the sulfites in the onions much worse. Sulfites make the acid much worse! It's a bad combination. Pickled foods are also high in tyramine, a product of an amino acid. So protein containing pickled foods are likely to be worse.
<icnmgrjill> So this means that we can say NOOOO to pickled pigs feet or eggs?
<BevLaumann> Right, they are likely worse than just a plain pickled cucumber. But, like most things, it's individual. You just have to try items and see how your body reacts!
<icnmgrjill> Hope says that she recently had a flare eating whole wheat and wheat germ but not white bread. Any idea why? And would brown rice have the same effect?
<BevLaumann> It doesn't have to do with the color. Most likely, it's the preservative or some artificial ingredient in the bread. Really test it by making your own whole wheat bread with flour, yeast and none of the additives and see if you have the same reaction. There are some breads that I can't eat either and, again, I can make my own home made version of it with no problem. So, I've identified the preservations used in breads as giving me problems.
<BevLaumann> One good brand that I've found is Orowheat's "Country White" bread. Orowheat also makes an all natural wheat bread without preservatives.
<icnmgrjill> What about brown rice?
<BevLaumann> Rice is one of the least allergenic, problematic foods for IC with the exception of the constipating qualities of rice in general. You might want to increase your fiber intake if you're eating a lot of rice so that constipation problems with all of the medications that we take. But brown rice is very nutritious and mild on the bladder!
<icnmgrjill> Broocha has a question about cheeses. Is Macaroni & Cheese made with Velveeta IC friendly?
<BevLaumann> Some people have alot of luck with velveeta because it has little cheddar in it. If you have luck with velveeta, you might also want to try American Cheese. However, if that doesn't work for you, Mozzarella in some recipes works very well! Mozzarella makes great grilled cheese sandwiches.
Here's a list of unripened cheeses that are likely to be good for your bladder: Cottage cheese, cream cheese, farmer cheese, string cheese, mozzarella, meunster, ricotta, gournay or boursin, Marscapone, Neufchatel, Pot Cheese, Feta Cheese and gjetoft, a cheese from Norway.
Some of the problem cheeses are the ones that are aged: (Generally the longer they are aged, the worse they are.) Sharp Cheddar would be worse than mild cheddar and, of course, rocquefort, edam, gouda and, especially smoked gouda (that's a double whammy one) are all very likely to give you a bladder flare. If you do have a bladder flare from eating those, it may be helped by using an antihistammine because one of the things they are very high in is histamines. For me, an antihistamine will dull the edge of the pain, but it won't completely supress the flare.
<icnmgrjill> Bev.. here's a question. When is your next book coming out?
<BevLaumann> When it's finished! <chuckle> I will be updating, adding and revising alot of the material for the next edition of "A Taste of the Good Life." But it will be more than a year before that comes out. The research involved will take at least a year to do if not a bit more. Also, things are changing so fast. IC research is changing so fast that I'm waiting to see how things turn out!
<icnmgrjill> With the holidays coming up, what's your feeling about some of the classic holiday foods, like eggnog?
<BevLaumann> Some people can tolerate it, especially if they make it themselves. The trouble with the store bought kind is that it is loaded with preservatives.
<icnmgrjill> Mulled Cider?
<BevLaumann> Well, apple juice is pretty acidic and they often add vitamin c and citric acid to it. If you want to try that. try the baby version of apple juice and also the baby version of pear juice. Hot mulled pear juice is very good! The baby versions of pear juice and apple juice are less acid because babies don't like acid stuff.
<icnmgrjill> Any holiday spices that we should avoid?
<BevLaumann> Cloves! AVOID CLOVES! Cloves are in a lot of holiday foods, from pies to fruitcakes and breads. It's very hard to get away from them. If you're making it yourself, you can substitute cloves with allspice and cinnamon, which works very well as a substitute!
<icnmgrjill> Moon has excellent question about IBS and foods. "What do you do when you can't take supplements and you have a very limited intake due to IC or IBS and a very sensitive stomach?
<BevLaumann> That's a problem when you have a complex situation, not just IC, but food allergies, IBS. You end up eliminating a lot of foods from your diet and end up not getting a nutritionally adequate diet. I advise you to work with a registered dietician. They have access to a lot of resources and can possibly track down foods that your body can tolerate AND supplements that your body can tolerate. The dietician may recommend that you pursue an elimination diet so that you can determine exactly what your food triggers are.
It's important to not eliminate foods that you don't have to. You can download a copy of the elimination diet protocol in the ICN Patient Handbook at: http://www.ic-network.com/handbook/ and that may help you slowly but surely eliminate the bad foods, but, more importantly, keep the foods that don't bother you.
<icnmgrjill> Also, let me just add that for many patients, it's a question of quantity. Sometimes we can have a taste of two of problem food but if we have more than that, it could cause a flare. Case in point is a doctor who called me and who wondered why one patient could eat one Hershey's Kiss.. but couldn't eat two without flaring her IC. Bev, would you agree with me, that part of this battle is just understanding quantities?
<BevLaumann> Yes, and I'd like to also add that its often a bucket full of water.. where if you add a thimble full more.. it overflows. But, if the bucket is only half full.. you can add a thimble more no problem. I find that if I haven't cheated on the diet in a long time, I can get away with a problem food. But if I've done a lot of cheating in the previous week, I may have more problems. Actually, it was an allergist that gave me the bucket example because that explains well how people can respond to allergens. A little may work but alot may be a problem.
<icnmgrjill> Melanie wants to know about peanut butter? Is it safe?
<BevLaumann> Some people can eat it and some can't. Peanuts are very allergenic, which can create problems for IC patients. Nuts, in general, are a problem. The ones that seem to be safest are almonds and cashews. If you want to experiment with nuts, those are probably the ones you want to start with rather than peanuts.
<icnmgrjill> Moon wants to know about duck? Is duck safe for an IC bladder?
<BevLaumann> Poultry, in general, is safe, as long as it hasn't been cured, smoked or treated in some way. The fresher the better.
<icnmgrjill> Jeanne wants to know what you think of Prelief?
<BevLaumann> It helps some people and it doesn't help some. The only way you'll know which category you'll fall into is to try it! I've never heard of anyone having a flare as a result of trying it.
<icnmgrjill> Bev... what about Pine nuts? Sue says that she can eat pine nuts without any trouble.
<BevLaumann>I can too. That's another one after the almonds and cashews!
<icnmgrjill> Cat has a question about soda. Would ginger ale be better to try than, say, a flat seven up or sprite?
<BevLaumann> Well, it depends upon the maker of the ginger ale and your tolerance for acid and caffeine. Even clear beverages have caffeine in them. You have to read the label carefully and anything which is carbonated will be acid because it forms carbonic acid. To flatten it, you can often put a little pinch of salt in, shake it, and then let it sit out for awhile. It's not as exciting but it may be easier on your bladder.
<icnmgrjill> Jeanne has the last question and it's about restaurants! What do you do in a restaurant when ordering food and making special requests?
<BevLaumann> I did a column on that very topic a while ago. You can read that in the archives at http://www.ic-network.com/bev/ It's very beneficial to cultivate assertiveness when in a restaurant. You don't need to explain why you have a special request. Often it's simpler to just say "You have a food allergy" and restaurant personnel will take that very seriously.
<icnmgrjill> Thank you so much BEV! You've answered many of our questions and you've done a wonderful job with your monthly columns! We so appreciate the gift of your time tonight.
<BevLaumann> Thank you very much! I wish you all a happy holidays! If you have any additional questions, you can email me through the IC network at email@example.com.
A Taste of the Good Life may be purchased through the IC Network Marketplace at: http://www.ic-network.com/marketplace/
Please review the ICN Disclaimer: Active and informed IC patients understand implicitly that no patient, or web site or presentation on a web site should be considered medical advice in all cases, we strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. A copy of our more extensive disclaimer can be found at: http://www.ic-network.com/disclaimer.html.
The opinion of the speaker is not necessarily the opinion of the IC-Network. Copyright © 1999, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Bev Laumann and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.