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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3 comments:

  1. I read "The IC Optimist" - 2011 Guide to Managing IC Flares, published via the site "IC network" and I found tere many recommendations of supplements. The selection is very confusing and I would be happy if someone could recommend something from this listed supplements from personal experience:
    AZO BLADDER PAIN RELIEF
    BLADDER Q
    CYSTA Q
    CYSTOPROTEC
    DESERT HARVEST ALOE WITH QUERCETIN

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    Replies
    1. Dvir, I can't give professional recommendations here on a public forum, but if you would like to set up a personal consultation with me, I can help you. Please email me at NutraConsults@aol.com.

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  2. I forgot to mention that ICN also has the Multiright supplement that is low in B6 and some patients can take. The article was more about the dangers of slicing entire food groups out of a person's diet. :-)

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