Tuesday, January 28, 2014

Are You Becoming Nutrient Deficient on the Interstitial Cystitis Diet?



Is the IC Diet Confusing?
I just had another interstitial cystitis/painful bladder patient contact me for symptoms of vitamin deficiency because she went "gluten-free" based on what she read in a book. This is the third person in a matter of months, and these are serious deficiency diseases we have not seen in this country for nearly 100 years. (Look up beriberi, pellagra, and megaloblastic anemia.) If little ol' me has had three people contact me in the past few months, 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. 

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. Oh yes, keep in mind that you also 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. If you lower your pain from an 8 to a 4, that is a success. Not everyone can get their pain down to zero or their frequency to 4 times a day.

2. If eliminating the main foods doesn't work, go to 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. If you still don't feel better, remember that stress, physical activity, and sexual intercourse could be triggering your interstitial cystitis symptoms. It isn't always food.  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.

4. 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 have an allergy.

5. Finally, you could try the gluten-free or the casein-free diets, but that is much further along the line. If you don't feel you are being helped a couple of weeks after starting one or the other of these restrictive diets, you probably won't be helped. I also advise to only try one first. 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 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.

Don't waste your time and money frantically listening to everything you read on the Internet. 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

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 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 


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Wednesday, January 15, 2014

The Interstitial Cystitis Diet: Getting to Your Baseline

There is no doubt that following an interstitial cystitis diet can be frustrating, especially if you think you are doing everything right and you still have symptoms.

When patients come to me with this scenario, I first check that they really are following the Bladder Friendly column from the IC Food List. Sometimes people are sneaking in foods that could be a problem. Or maybe a food is fine, but the way they prepare it turns it into a trigger food. It is important to really clean up the diet to get maximum results.

In addition, the length of time it takes for individual patients to experience relief varies. Some symptoms will likely diminish within days, but greater results can be expected over time.

The good news is that the Bladder Friendly column of the IC Food List was developed to be healthy even if used over a long period of time.

Once the diet has been tackled, I ask patients what other bladder pain triggers they may be experiencing:
  1. Are they having symptoms after stressful events? (Need stress management ideas? Check out Interstitial Cystitis and Stress: Can Stress Affect Your Bladder?
  2. Are they getting enough sleep? (Yes, I know...when you are jumping up every 45 minutes all night long, how can you get enough sleep? For ideas read: Are You Sick and Tired of Being Sick and Tired? How to Get More Energy Without Caffeine )
  3. Are they having problems after exercise or intimacy? (Check out Jen's great suggestions in the ICN Forum)

If after addressing stress, sleep, and physical activity or intimacy, IC patients are still struggling with painful bladder symptoms, I ask if they might consider allergy testing to see if they have allergies to foods that are usually ok for most other IC patients. Food allergies, even to traditionally bladder friendly foods, can cause interstitial cystitis flares. To learn more read Interstitial Cystitis: Allergies and Diet.

Becoming an efficient IC problem solver and developing your personal self-help skills can help you reclaim your life as soon as possible. In addition to the above resources, I also have a free e-book that walks you through the process of finding your trigger foods. That small e-book might be all that you need. If you need more help, the books Customizing the Interstitial Cystitis Diet and Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder can take you a step further.

PS: If you sign up through the e-book link above, you will also be added to my newsletter list which you can opt out of at any time. Hang in there. It DOES get better.....sending you all understanding hugs!


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



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Wednesday, January 8, 2014

The Best Interstitial Cystitis Diet Information?


Interstitial Cystitis: A Guide for Nutrition Educators
Today I read again about a so-called "nutrition educator" giving out bad dietary information about interstitial cystitis/painful bladder syndrome and diet. This information could potentially cause patients pain. First I want to cry, then I want to scream....but neither of those actions will change that person and what they are doing. So, here I go again...trying to educate YOU, so YOU don't make a mistake.

To Patients:

PLEASE, if someone is recommending anything for your IC, diet or otherwise,  double and triple check their credentials and compare their information against the diet information we KNOW works (www.ic-diet.com). For example, you do NOT need to juice unless you are juicing foods that are bladder friendly. I have had dozens of patients write and call me in the past few months because they are in horrible, horrible pain from this! Be careful. Also, you do NOT need any special blood testing unless you want to go with traditional allergy testing. I know it is confusing because there is so much BAD information out there that sounds compelling. If it sounds too good to be true, it probably is. But doing it the right way isn't that hard, trust me. Start with the basic IC Food List Bladder Friendly List, and go from there. You can check out my books, or contact me for a personal phone or video consultation. Don't you deserve to be out of pain and back living your life? Don't waste time or money on things that don't work. Focus your time and resources on the things we know DO work!

To Urology Dietitian/Nutritionists and Nurses:


Take the time to learn about the IC diet as we know it today. Learn how to help your patients individualize their meal plans.

Posts like the one I read today make me sad, angry, and frustrated. But I also get many more notes from patients who tell me that they feel SO much better because they follow my guidelines. You CAN feel better. Now let's do it! 

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



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