In the past 14 years I have seen many different "interstitial cystitis diets" come and go. In fact, if you do a search online, you will come up with all sorts of "IC diets," most based only on someone's opinion, and not based on research at all. The most recent wave of this is the promotion of using a gluten-free diet. It is being promoted not only for IC but for weight loss and a multitude of inflammatory conditions. The thing to remember is that a gluten-free diet is very challenging to follow. Not only is it hard to find gluten-free foods, but it can be difficult to balance your diet. A gluten-free diet is often higher in fat, simple sugars, and processed carbohydrates like processed rice and potato flours, and can be missing some essential nutrients if the patient is not diligent in replacing them.I am personally not convinced that going gluten free is necessary for all IC patients. With the thousands of IC patients I have worked with in the past 10+ years, I have not seen this to be an issue unless someone had a documented gluten sensitivity for some other reason.
That being said, if a person wants to try a gluten free diet for a week or two, I don't discourage them. I believe in the patient's intuition and wisdom of their own body. If it works, great...if it doesn't work after a week or two, it probably isn't going to work so it is better to focus on other things.
The bottom line is that going gluten free isn't going to replace getting rid of caffeine, sodas, alcohol, soy, citrus, chocolate, spicy foods, and tomatoes. Those are the documented foods that bother an IC bladder......not toast and Cream of Wheat which many IC patients actually find soothing when they cannot eat other foods.
One of the leading experts in this area is dietitian Shelley Case. Her book, Gluten-Free Diet is now in its fourth edition. If you would like to know her opinion on the matter, you can listen to a recent online interview here.
Have you tried to follow a gluten-free diet? If so what convinced you to try it? Did it help?
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
For health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
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I did try a gluten-free diet last summer. My daughter was diagnosed with celiac disease, so we both ate gluten free from the time she was diagnosed until she returned to college. For her, obviously, the diet was wonderful. She started gaining weight and finally felt good and had energy for the first time in years. I did lose a few pounds and felt better. But, as you said, when my IC flared I couldn't stay with it. I needed bland foods...especially cereals and breads and the GF versions of them just weren't the same. She has been on her GF diet for close to a year now and is doing great, looks good and basically is a new person. When she comes home next month for the summer I'll probably cut down on the breads, etc., just so they won't be around the house, tempting her.
ReplyDeleteThank you for sharing your personal story, Carolyn. I just hate to see IC patients take more out of their diet than they actually have to. I wasn't joking about the Cream of Wheat. I really find it soothing when I am not well.
ReplyDeleteYes I have tried a gluten free diet. I have only urgency and frequency IC symptoms at this time. I am about 70% raw and vegan. So by going vegan and raw I found that all my IC symptoms were eliminated except for the urgency and frequency of urination. So I thought let me eliminate gluten, why not give it a try. Now I must admit I did not go as far as wearing gluten free make-up. Unfortunately going gluten free did not help me with my urination frustration but I found that I was continuing to feel better and I thought that vegan and raw
ReplyDeletehad given that back to me. I did not realize I could feel even better without eating gluten. It is my belief, now, that my main problem is digestion. I have trouble digesting food. Therefore eliminating gluten help speed up my digestion even more. I had one tiny slice of cornbread the other day at my friends house and no problems. However, it is rare that I eat any bread, crackers and desserts. Perhaps I have a sensitivity to gluten but my gut tells me that I must stick to the vegan/gluten-free for a year or two more and let my body detox. I have been vegan for just over a year, raw more and more but started trying to consume more raw foods 6 months ago, and gluten free most weeks for 4.5 months. I live without many foods, that I miss, but the one thing that I live without is pain...it is all worth it for that. :-)
I went on an elimination diet for about 2 months. I am glad I didn't find that I was sensitive to gluten, instead it was the typical IC culprits: coffee, soy and citrus, as well as tahini, which was a surprise. I think following a diet that is low in sugar is also really helpful for reducing flares. I highly recommend trying an elimination diet to identify your own personal triggers.
ReplyDeleteI am currently trying the no gluten no wheat diet. It has been costly. It has been 2 weeks, but I had a day where a family meal meant I had wheat, and boy did I enjoy it! I feel a bit better, but still have burning and frequency, I just don't know ... I want to cut out dairy too, I think I need to get in touch with a nutritional expert if I am to continue.
ReplyDeleteEating gluten free is not difficult and totally worth it (if it helps the individual). I began eating gluten free at the advise of a personal trainer and have been GF for over one year. It has been life changing. My IC symptoms have lessened considerably, I no longer have extreme bloating and I find myself without joint pain.
ReplyDeleteI am glad to hear your experience. I absolutely believe that each IC patient needs to listen to his or her own body and do what is best for them. Like anything else with this crazy disease, somethings will help some people and not others. I am glad you have gotten relief. Would you mind emailing me? I would like to talk to you more about this: NutraConsults@aol.com. Thanks!
ReplyDeleteI went gluten-free last October, but also started taking a few new recommended supplements around the same time. I had less pain, but was never sure what was making me feel better. This summer I had to stop being gluten-free, due to a lot of traveling where I had no control over my food choices (i.e., being on a 6 acre island in Lake Erie for a few weeks). I had a major increase in pain during this time, but was also eat heavily processed, sodium-laden, and not-IC-diet-approved foods.
ReplyDeleteOnce I got home and started following the IC diet again, I felt much better, and have continued to eat foods containing wheat without trouble. I feel that eating fresh, minimally processed food is more important for my symptom management than avoiding wheat products.
Thank you for sharing your experience, Heather. I think this is definitely something we need more research on!
DeleteHi Julie, I was diagnosed with IC 4 years ago. My IC causes tiny ulcers to form in my bladder, and I would consistenly find blood in my urine along with the pain and urgency. The urologist who diagnosed my IC prescribed Atarax to help me sleep during flare ups. During my 30 days of Atarax, all of my stomach pain and heartburn went away along with most of the bladder pain. It is my understanding that Atrax is a very strong antihistamine which got me thinking....maybe a food allergy is triggering these symptoms. Turns out the culprit for me was gluten. As long as I completely eliminate gluten from my diet, the IC remains under control. Times that I have "cheated", within 6 hours I am guaranteed that the bladder pain/pressure will return. The really weird thing is that none of the other typical trigger foods seem to bother me. I can eat chocolate, tomatoes, spicy foods, coffee, and orange juice with no problems. One whole wheat bagel, however, will have me screaming in the bathroom urinating "pink".
ReplyDeleteI appreciate that you shared your experience! I believe there is a segment of the population with bladder symptoms that is gluten sensitive. To me it goes back to the question, "What is IC?" This is a question that doesn't have a complete answer as of this writing. In fact other diseases like fibromyalgia, multiple sclerosis, and mastocytosis have bladder complications just like some people with gluten allergies/sensitivities. So, are bladder problems simply symptoms of other diseases and that is why we have so many different presentations and treatments? Or is IC a disease to itself and other people have "IC-like" symptoms but they don't really have IC?
ReplyDeleteAs I like to say, "Stay tuned as we learn more!"
Hi Julie I have a question for you. I was diagnosed with IC about three to four years ago and I just recently found I may have sensitivity to Gluten as well. Is there a meal plan I can get ideas from? I mean If you look over both lists of what to aoid they kind of cancel one another out.....Not sure what to eat to....
ReplyDeleteHi! Please email me at NutraConsults@aol.com and we can set up an appointment to talk!
DeleteHas anyone noticed improvements with regards to Bladder Pain Syndrome and the exclusion of Gluten in their diet? My BPS is out of control and haven't been able to pinpoint it to any certain foods. thinking of excluding gluten...
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