Are You Becoming Nutrient Deficient on the Interstitial Cystitis Diet?

I frequently have interstitial cystitis/painful bladder patients contact me for symptoms of vitamin deficiency because they went "gluten-free" based on " information from the internet." These can be serious deficiency diseases we have not seen in this country for nearly 100 years. (Look up beriberi, pellagra, and megaloblastic anemia.) The reasons for these deficiencies are well known. Wheat flour is often enriched with vitamins that substitute flours (rice, amaranth, potato, etc.) are typically not. This is leaving a big hole in the nutrition of many people. In fact, I imagine there are thousands out there with the same problem. 

I know some people with IC say they are being helped by going gluten- or dairy-free, and if that is the case, I am thrilled for them. I am not against anyone trying something that they feel could help their painful bladder and frequency. But if you want to try it, I want you to KNOW going in that it is very difficult, especially when paired with the IC Food List that we already know works for 90% of the people (Documented, not made up....90% plus people with interstitial cystitis are actually helped with this IC Diet Food List). Trust me, the last thing you want to do is give yourself MORE problems than you already have. Gluten-free diets need to be taught and supervised, at least at first, by dietitians so that the patients can learn what they need to do to fill these nutrition holes in their diets. 

Nutrition is a science for a reason. Until we start enriching other non-gluten grains with the vitamins and minerals you are missing when you don't eat wheat, rye, and barley, you will have to watch your diet extremely carefully to be sure that you are getting all the nutrients you need. Keep in mind that IC patients can't supplement many of these nutrients with a multivitamin like someone with celiac (but no IC) can, because that hurts an IC bladder. It is tricky business at its best. 

My friends, you only have one life. Some of you are desperate to get well, I know that. I have been there. But don't get so frantic that you reach for everything out there and end up worse than before.

If you are new to IC and the interstitial cystitis diet, here is the plan I work from with my patients:

1. Start by eliminating the top offenders. Citrus, spicy hot foods, MSG, soy, caffeine, coffee, tea, sodas, alcohol, tomatoes, cranberry juice, chocolate. See how you do without changing anything else. Give it a couple of weeks to see if you improve. Be sure to keep a food and symptom diary to be able to "measure" your success. Not everyone can get their pain down to zero or their frequency to 4 times a day. However, if you lower your pain from an 8 to a 4, that is a success.

2. If eliminating the main offenders doesn't work, you can then use the Bladder Friendly list on the IC Diet. Again, keep the diary and follow for a few weeks to see if you improve. You might have to muster up some patience, but try. Eventually most people feel better.

3. Be sure to eat foods from all the food groups. Not all fruits are bad. Many IC safe vegetables provide similar nutrition to fruits. (See Interstitial Cystitis: No Citrus, No Strawberries? No Problem!) Eating a wide variety of foods is essential for good health.

4. Modify how you supplement nutrients. Consider a brand of multivitamin specific for painful bladder patients. Or, use a children's formula multivitamin, usually 25% of an adult's needs, taking one dose in the morning and one dose in the evening. The benefit here is that more vitamins will actually be absorbed since the body can only use so much at one time.

5. If you still don't feel better, remember that it isn't always food. Stress, physical activity, hormonal cycles, and sexual intercourse could be triggering your interstitial cystitis symptoms. Don't keep eliminating foods in your diet just because you "think" they are bothering you. Use your diary. Talk to someone else who might be able to see patterns. Try to approach this as scientifically as you can.

6. If you have faithfully tried everything else and you have a history of allergies, consider being tested for food allergies. Now and then an IC patient reacts to a "Bladder Safe" food and it is usually because they are not even aware that they have an allergy. I have seen patients allergic to dairy, corn, pears, eggs, and beef. All foods that are normally considered safe and even soothing for most IC patients. Unless you are allergic.

7. Finally, you could try the gluten-free or the casein-free diets, but that is much further along the line. A rule of thumb here is if you don't feel you are being helped within a few weeks of starting one or the other of these restrictive diets, you probably won't be helped. I also advise to eliminate one thing at a time. That way if you DO get better, you aren't trying to figure out which food group is hurting you.

As many have discovered, when you take a whole food group out of the diet, it becomes much more difficult to balance your nutrients. Those eliminations need to be approached cautiously and scientifically or you will create many more problems than you already have. It is extremely frustrating that "medical professionals" with only a teeny fraction of the nutrition training that dietitians have, pass out this information so freely.

Finally, don't waste your time and money frantically listening to everything you read on the Internet, and trying to assimilate each and ever suggestion you come across. If you want help, I want to help you. I CAN help you. I am working with groups of dietitians to help train more people who can help you, but that is going to take years. Until that happens, however, I try to accommodate as many people as possible into my schedule. If you want to have a private appointment with me, I do phone and video (Facetime/Skype) consultations for people. Please email me at NutraConsults@aol.com.


Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com 

Just Tell Me What to Eat!

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