diet
November 14, 2006 - 11:12pm — liza risk
What are safe cheeses to eat
Can I drink decaff coffee from Starbucks or make it at home?
What are safe spices
Is cinnamon ok?
I have had IC for 3 weeks and it feels like 3 yrs
What type of Multivitamin can I take, My hair is falling out and ICers cannot take vit c or b
Welcome Liza - there is hope and help for IC
Hi Liza,
First off let me welcome you to ICadvice, it's wonderful that you've joined us here! The site is undergoing some "reconstructive surgery" at the moment, but things are coming along great with the changes.
I know where you are coming from, Liza, there are times when IC seems make you feel like you're falling into a bottomless black pit, or that you are on your very last nerve. But please, I urge you to try not to bet yourself up mentally about IC, especially when your physical body is already taking such a blow from it.
When you say that you've only had IC for three weeks, do you mean that you were officially diagnosed with it then? Or that your symptoms started 3 weeks ago? Not that it matters much, I was only asking because it's extremely rare for an ICer to be fortunate enough to get a diagnosis so quickly (if only the opposite were the case and we were all diagnosed in a matter or weeks or days!).
The IC diet can most certainly take some getting used to, and it's not an overnight thing by any means. For those of us who choose to embark upon it, the task of determining which specific foods and beverages bother you can seem like an uphill battle initially. But with time many people find that once they know what the majority of their trigger foods are, life with the IC diet is far better than living with food induced flare-ups. Trial and error in inevitably involved when you adapt the IC diet into your life, but – and please believe me when I say this – the benefits of eliminating or greatly reducing problem foods can be one of the best (medication-less) things you can possibly do for your IC bladder.
Now I'm not a doctor, nurse or dietitian, but I have been following an IC friendly diet for many years. However, it's crucial to always remember that no two IC patients are alike, and while one person might be able to eat a few strawberries or a sliver of tomato safely, these things may be enough to land another person in bed for days on end.
In general ICers tend to do best with what are known as fresh cheeses (these are not always the same thing as "soft cheeses" such as Brie and Camembert, which – while creamy to the touch – are in fact aged), which have not been subjected to much in the way of chemical processing or aging. Here is a list of some of fresh cheeses which many ICers find they can tolerate:
It is thought that a lot of the reason why many cheeses bother our bladders is because as cheese (and many protein based foods) age they increase (or develop) certain chemical properties that act as irritating agents on our sensitive IC bladders. Histamine and tyramine are two such things which are found abundantly in most all aged/ripened/smoked cheeses. In addition, some cheeses include preservative, dyes, and artificial ingredients all of which are likely to upset your bladder. (And many aged cheeses develop a natural acidity which can pack quite a punch when you've got IC!)
While you may find that varieties like cheddar, Gouda and Swiss are off your cheese board, some ICers are able to eat a few types or mildly aged cheeses such as Monetary Jack, Scamorze (not the smoked kinds), Muenster (makes a great cheddar substitute for casserole toppings), and Gjetost. American cheese as well as Velveta and Cheeze Whiz are all processed foods that contain a percentage of real cheese that is commonly mixed with things like whey, salt, emulsifiers, colourings, benzoate (a bladder irritant for some people), water and milk-fat. As such these types of cheeses are not as easily tolerated by some people as perhaps cottage cheese or feta would be. Try it out yourself (a small portion) on a day when you're only eating foods which are IC friendly and see if you experience a reaction within the next 24-48 hours.
Coffee is one of those foods that many ICers find to be amongst the hardest things to part with – or reduce their intake of. Not only is coffee naturally acidic and rich in tannins, but it contains stimulants including caffeine which are far to harsh for the majority of ICers to handle (the same can basically be said of teas – minus purely herbal teas - too). In all fairness, some ICers can drink decaffeinated coffee, but certainly not everyone can. Decaf coffee still contains some caffeine because there is no known method of extraction which is yet able to rid coffee or tea of all its caffeine (generally anywhere from 0.5-5% caffeine will always remain). As well ridding a product of most of its caffeine will not get rid of its natural acidity, and coffee acid is a major bladder burner! Low acid coffees are one option to try, and a brand called Euromild even makes a variety which is both decaffeinated and lower in acid.
If like myself, you find that your bladder cannot tolerate even the slightest smidgen of coffee, there are some alternative products on the market which strive to taste very similar to real coffee. As with all foods though, even these have the potential to include an ingredient which might give your bladder problems so it's best to always read the labels well. There are several brands of coffee alternatives on the market (most of them get their bulk from chicory), and a trip to your local health food store might reveal brands such as Teeccino, Cafix, and Pero (probably the best that I've tried – plus I use it to make desserts which normally call for coffee and no one has yet been able to tell the difference, well except for my bladder, which is much happier without the harsh acidity and caffeine).
Fortunately most spices and herbs are generally IC friendly, the main issue with spices is that you'll want to stay away from those which are "hot" such as cayenne, chili (dried, powdered, fresh, flakes), paprika, mustard, horseradish/wasabi (technically plant products), and cloves. Large doses of pepper, ginger and cumin, may also be problematic for some people (the average serving of each of these is okay with my bladder). Cinnamon and allspice both contain an ingredient which is also found abundantly in cloves called eugenic acid, which can be very problematic for our bladder (cloves also contain tannins). That said, because allspice and cinnamon are much lower in this gastric acid producing substance, some ICers are able to eat them (personally I'm fine with both of these, but avoid cloves diligently as they do increase my symptoms).
Beyond those things the majority of herbs and spices are fairly safe. Some of my favorites include basil, thyme, rosemary, nutmeg and mace, cardamom, caraway, ginger, tarragon, dill, chervil, parsley (do not though that parsley is a natural diuretic if eaten in generous amounts, an effect which most ICers will want to avoid), oregano, fennel (great if you also have IBS, as is another bladder safe herb, peppermint), anise and sage. I truly love to cook with fresh herbs, but when they're not available dried generally get the job done too, and both keep my bladder happy.
To be honest, I can't really tell you what multivitamin to take. This is something which is very individual and will depend upon your own nutritional and health needs. As a general rule of thumb though, as you mentioned those with vitamin C that is derived from citric acid are likely to bother ICers. If this is a concern for you, some brands make buffered vitamin C, which can be easier on your bladder (look for the term "Ester C"), or you can obtain an adequate amount of this important substance through your diet (yes, even the IC diet :-)). Great IC friendly sources of vitamin C include bell peppers, broccoli, Brussels sprouts, spinach, cabbage, cauliflower, honeydew melon, blueberries, blackberries, potatoes and kale.
There are several types of vitamin B (pyridoxine/pyridoxal/pyridoxamine), and it appears that vitamin B6 is the one that proves dangerous for some of us. As it is a common and valuable vitamin it too does appear in many "all purpose" multivitamins, but again there are some wonderful, IC friendly foods which are high in vitamin B6 including bananas (do note that some ICers are bothered by the natural potassium in bananas, while others can easily enjoy them), eggs, oats (for me, oats are one of those fail-proof foods that I can always depend on to see me through even the roughest of health days), chicken, beef, fish, spinach, avocados, chickpeas, sunflower seeds and brown rice.
If you feel that your diet is not currently meeting your vitamin and mineral needs, I highly recommend that you work with your doctor(s) and pharmacist to find the best vitamins for your own situation. This may mean that instead of a multivitamin, you take things like vitamin D, E and A separately, so as to avoid products with vitamin C or B6 in them. Remember that with all vitamins and supplements, you'll want to try and avoid those which contain artificial fillers, dyes, preservatives, added (IC troublesome) acids and artificial ingredients.
May I ask, were you speaking figuratively or literally when you said that your hair is falling out? Sometimes when people begin taking the IC medication Elmiron, they experience hair loss. A worrisome side effect which stops after a while for some people and causes others to have to discontinue use of this drug (unless they choose to live with the hair loss because the positive results that they are experiencing are worth the trade-off in the their opinion). Losing your hair from stress, medication or any other reason is not a normal thing for a woman, and it is truly something which you should address right away with your doctor.
Please know Liza, that even if things are tremendously rough for you right now, you are by no means alone in your battle with interstitial cystitis. Know that you can ask your questions freely on this site and that they will be meet with kindness and understanding from people who have journeyed down similar paths as your own.
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!
IC Diet
Thanks Jessica!
I am so glad I have found you.
Yes I had 3 bladder infections in Late September and was rfered to Urologist in late Oct. Then found that this was IC.
I am on pyridium and Enablex for when symptoms arise but I want to do whatever I can to heal and get over this but do reallize I might have this forever. I want to get on Elmirion and have bladder installations. I feel b urning all of the time.
I am glad to know that i can have Mozzarella and maybe bananas and Avocados!
I have tried teechino and it is great but I am putting on NON Dairy creamer in it and maybe that is causing the burn. I will try Jack cheese.
Thanks and I will be returning soon for more questions. My
ic diet
also what about peanut butter? Salsa Verde with tomatillos?, ice cream..pinto beans, sugar cookies, sugary sweets in general.
Fear not, there are lots of IC friendly dessert options
Hi Liza,
You're very welcome, I hope that what I wrote and the Interstitial Cystitis information on this site will be able to help you as you embark on this new way of approaching what you eat, and how you look at the interactions between your bladder and food.
Though my own (IC) did not, so many peoples' IC stories begin with numerous (in some cases chronic) UTIs, and so you are certainly not alone there. While having IC isn't great, it is fantastic that you were able to find a competent urologist and receive a diagnosis so quickly. Hopefully now some of the meds that he/she prescribed for you will help; Elmiron isn't a magic IC cure (sadly!), but for an estimated 30-40% of users, it does provide some degree of symptom management and relief. One has to have a bit of patience with it though, as Elmiron can take upwards of several months to begin working, if it is going to work at all for a person. Of course some people feel results much sooner, but generally it does take at least a few weeks (it was about 4 months before I noticed a positive difference).
Aside from Elmiron there are many other oral IC medication options. Elmiron is just sort of unique because to date it is the first and only FDA approved drug specifically for the treatment of IC. Depending on the severity of your case and how both you and your doctors feel about it, trying a number of oral medications (antihistamines, low dose antidepressants, anticonvulsants, antispasmodics, etc) is often the route that many people opt to go with before advancing on to bladder installations (and/or hydrodistention). Some people also use oral meds and installations at the same time, again it's a very person choice which will be dependent on many factors in your life.
I find it a bit interesting that your doctor decided to start you off with Enablex (which is a med for Overactive Bladder, not specifically for IC symptoms) and Pyridium. I remember in my first few weeks with IC, when I hadn't the slightest clue what it was – and despite scads of negative UTI tests – I was prescribed Pyridium. It did not help (actually I think it exasperated my IC symptoms) and it made me more nauseous than any medication ever has (to this day) in my life, so I stopped after a few days.
Pyridium's an urinary analgesic medication, which it seems many ICers are prescribed at some point or another, but it rarely does all that much (at least amongst the ICers I've spoken to about it) because it wasn't designed for IC. It's purpose is largely to help reduce urinary pain/burning, frequency and urgency following surgery, infection, catheterization, or injury – and it's not meant for long term use (plus, isn't it awful how it turns your urine that bright, garish orange colour!). However if you also have a UTI right now in conjunction with your IC (I know, that sounds too cruel to be true, but it's relatively common – unfortunately having IC doesn't make your bladder immune to other problems), Pyridium may offer some help.
I always believe in hope, unequivocally, but at the same time I find that it does help a lot to be realistic. Some people do find treatment options (diet, medications, instillations, life style changes, neuromodulation, alternative therapies, etc) that work to the point where they either feel no symptoms at all, or where their symptoms have lessen to a degree that they are able to live much like they did before developing IC - others still go into periods of remission. However for many ICers, living with IC is a longterm part of their lives. This doesn't mean of course, that your life is “over as you know it” or that you won't find treatment options which help, but as with the development of any chronic illness there are many things a person has to feel and go through on many levels before it sort of all sinks in (this is 100% normal).
Have you checked out the Interstitial Cystitis diet information page here? (Click on the blue words to be taken there.) It's a detailed look at many of the everyday foods which are considered good, bad, or in between for those with IC. It is worth noting however that a few ICers say that they do not see any changes in their IC when they adopt this type of eating plan. As to why that is, it's almost anyone's guess, because so many ICers do feel that the diet helps them a lot. Another (what some dub “alternative”) dietary idea which some people apply to IC treatment is that of the acid & alkali system, which essentially believes that the body must have the right balance of acid and alkali to remain healthy, and since both acid and alkali are known to play roles with IC bladders this is another route that one can always experiment with (a book entitled, “Solving the Interstitial Cystitis Puzzle: A Guide to Natural Healing”, by Armit Willis, is the most comprehensive title on the subject of IC and acid/alkali roles).
Not all ICers can tolerate avocados, so I would start off with small portions and not add anything acidic to them such as lemon or lime juice, tomato products, mayonnaise or vinegar. Part of the reason why avocados may bother some ICers is that they are (just as with bananas) high in potassium.
Tomatillos, that's a great question! As they are not actually tomatoes, they may be easier to tolerate than even ripe green tomatoes (some ICers find that white, yellow and green tomatoes are easier on their bladders than red ones). Again, that is something which you'll have to experiment with in moderation and on a day when you've avoided other potentially bladder damaging foods.
Do you mean Mexican salsa verde or Italian salsa verde? The idea of the Mexican version sort of scares my bladder, and makes me fear for your's because most recipes that I've encountered used fresh chillies and sometimes other bladder irritants like citrus juice or fresh tomatoes. Those three things have the potential to be much worse for you than the tomatillos may be. I love salsa too, but find that in order to spare my bladder a lot of pain, I have to make it at home without any chili, citrus juice or raw onion (many ICers have a hard time with raw onions, yet cooked ones seem to be better tolerated; chives, shallots and green onions make good substitutions), and usually use green or yellow tomatoes, adding chopped bell pepper, corn and other veggies so as to use even less tomato. Plus I always eat salsa or any tomato containing food with with Prelief to help reduce the acidity of the tomatoes (in a pinch, a tablespoon of baking soda dissolved into a glass or water can help to buffer the acid as well).
Italian salsa verde is no less of a potential red flag raising recipe, as it usually contains ingredients like capers, lemon juice or vinegar and sometimes anchovies. When I make it for my husband and I, I leave all of those things out and instead end up with something that tastes a fair bit like a parsley laced version of pesto (really lovely with cold roast chicken or fresh steamed potatoes).
In general most nuts are not IC friendly, though this seems to be an area where a lot of us differ. Generally speaking though, peanuts and peanut butter is not considered to be IC safe (I suggest that you try making peanut butter yourself or buying a preservative free brand, to ensure that you can determine if it's the peanuts which are upsetting your bladder). Almonds, cashews and pine nuts are the nuts which are usually best for most ICers (cashew butter makes a wonderful substitute for peanut butter and can easily be used in baking too).
Pinto beans should be fine, most beans – with the notable exception of lima, soy, fava and black beans – are IC friendly (some people do find that they bring on gas and bloating though and that this in turn can affect their bladders; the over the counter product called Beano can help to reduce the negative points which came come with eating beans). Personally I really love white beans, especially cooked in stock with fresh rosemary.
With things like ice cream, desserts and sweets, their tolerability will largely steam from what is included in them, and if they contain bladder harming addictive and/or preservatives. Some of the key things in these foods which can cause problems are chocolate (some ICers can eat white chocolate as it is free of the actual acidic cocoa powder which gives dark chocolate its colour), alcohol, coffee, anything with caffeine, problem fruits and nuts, food colourings, dried fruits with sulfates (check health food stores for sulfur-free blueberries, raisins and dried pears), artificial sweeteners and cloves. I realize that sounds like it covers a good chunk of all sweet foods, but I promise you that it still leaves a surprisingly large number of available dessert and sweet snack options.
I generally prefer homemade desserts to store bought ones (in a restaurant, if the dessert is made on site, I will sometimes have a treat, so long as the ingredients are IC friendly, like a pear tart, blackberry pie or maple pudding). That way I know each and every ingredient that is going into it (even without an ice cream maker, ice cream is easy to make at home, all you need is a couple of hours as you'll have to stir it every so often as it sets in the freezer). Some IC friendlier dessert options are recipes and foods like plain angel food cake, vanilla cake, toffee squares (chocolate and problem nut freeze), crème brule, vanilla and caramel puddings, white chocolate mousse, plain cheesecake (or try making it with IC friendly spices like cinnamon, nutmeg or ginger), melon (though cantaloupe proves to be too acidic for many ICers), fresh blackberries and blueberries (not all ICers can handle blackberries, but blueberries, which are much less acidic, are tolerated by most), pies, tarts and tartlettes made with safe ingredients; pumpkin pie (without cloves), carob chips and desserts made with carob products, black licorice (I can eat the red Wal-Mart brand one, which is a really nice treat!), rice pudding, tapioca, semolina pudding, flan, custard (alcohol free), Rice Krispy squares (homemade), marshmallows, plain pound cake (I love tossing in some crystallized ginger and fresh pear), sweetened ricotta and mascarpone cheeses, honey and honey comb (make sure it's addictive and preservative free), sugar cookies, oatmeal cookies, muffins (made with IC friendly ingredients), and homemade toffee or caramel popcorn. (For more IC friendly dessert ideas check out our recipe section).
It's clear that your really eager to take an active role in managing your IC, and that is a big step, Liza! In time, so long as you find it's helping, the IC diet not only gets easier but becomes second nature (though, even the most seasoned veteran can still encounter food related flares!). All of your questions are welcome, and I really hope that between the diet changes, medications and other steps that you are taking, all of these things will help your IC.
Healing Hugs,
Jessica