Interstitial Cystitis: A Dietary Challenge

October 20, 2010

It’s been awhile! We’ve been making some major changes to our diet lately that I’ve been a little reluctant to talk about. I think I just needed a little time to digest it all before I could write about my latest culinary challenges.

Quite some time ago, I was diagnosed with hypoglycemia. This explained why I couldn’t go for long errands without turning into an incomprehensible shaking zombie. It also explains my sweet fang (a nickname I earned because my sweet tooth is primal). Here is a quick run down of how hypoglycemia works, thanks to

In reactive hypoglycemia the pancreas produces too much insulin when sugar is absorbed into the bloodstream, which then causes blood sugar to fall rapidly. In addition, this hypersecretion of insulin has a suppressive effect on glucagon, a hormone that is designed to kick in when blood sugar is low. Without glucagon to take over when blood sugar falls, there is no immediate energy available for the muscles and brain, which causes lethargy, neural damage, shakiness, and a host of other problems.

My doctor at the time dutifully instructed me to eat 5 small meals a day and avoid sugar and simple starches which would set off the spike-dip cycle I was all too familiar with. I was also told something about this being linked to diabetes later in life but it went in one ear and out the other. Like all good Missouri girls with stubbornness issues, I was determined to find my own way, one that included being able to eat all the ice cream and cookies my waist-line could tolerate. I also decided not to breath a word of my diagnosis to anyone lest they decided to critique my dietary blunders.

A little over a year ago, I developed a separate “unrelated” medical problem that caused me so much pain I was out of work for weeks until I adjusted to the nauseating affliction. My doctor was at odds to say what it could be. I had to see several specialists and go through many tests to rule out cancer. Some specialist would reassure me that my tests had concluded I didn’t have cancer, only so another specialist could say it hadn’t been ruled out yet. For some it would have been a terrible ordeal but God was constantly whispering reassurances in my ear.  I knew it wasn’t cancer.

I was relieved when my doctors finally reached the same conclusion I had, Interstitial Cystitis. It is a disease that to me, feels like varying degrees of  severe menstrual cramps, everyday. There is no cure and it is chronic. That last part was a little hard to swallow. I just kept saying “but I’m only 27.”

The treatments available to me were barbaric in my book, and short term. The medicines had yet to be tested sufficiently on women in their childbearing years. Most of the recommended dietary changes did not affect me. Water was my only ally. I adjusted to the pain and it served as a reminder to keep flushing my body with water.

I also developed a deep abiding friendship with milk and cookies. It was my preferred meal of the day and I had no qualms giving up dinner so I could eat more cookies. Seth couldn’t resist the cookies either and soon our sedentary life started to tell on us (at least me).  We tried cutting back a few times but our bodies kept the pounds on. Finally, we got fed up with ourselves. We knew of some family members who’d had significant success with the South Beach diet so we decided to look into it.

Funny thing about the S0uth Beach diet, it’s identical to the diet I was supposed to go on for my hypoglycemia! Eat five meals a day and avoid simple starches. Many people mistakenly call the South Beach diet a low-carb diet. I would call it a Good-Carb diet, because it includes whole grains and all the fruits and vegetables you can eat. No sugar though. There was only one way I was going to manage a diet like that, and it included compromising my values on artificial ingredients. A girl has got to have her sweets!

Well, guess what happened when we went on the diet? We lost weight! Yea yea. We also lost all of our health problems! My hypoglycemia is under control, the IC pain went away, and Seth went from taking a daily antacid to needing one once a week, if at all. Just in case you missed that one part: My IC pain went away!

I’m really not sure how to explain this, but I do have this: Not too long ago a family member of ours went to the hospital because he thought he had a UTI. The pain he felt was actually due to an accumulation of sugar in his urine. He came out with a diagnosis of diabetes. Maybe if sugar is what caused his pain, there could be a connection between sugar and IC?

Seth and I are prone to cheating on our diet, after all there are a lot of tasty things in the simple starch category. We relish these opportunities and later suffer the consequences. My IC flares up and his reflux hits him hard. Our bodies are trying to tell us something but we aren’t very good at listening. The rest of the world doesn’t make it any easier. Whole grains and produce are on the pricey side and dietary restrictions are hard to accommodate. We eat with gratitude anything that comes our way. I think we can afford to do this knowing relief is on the other side. Whenever we’re ready we can go back on the Good-Carb diet and our pain is short-lived.

I would say we are still adjusting. This could take awhile to develop into a congruous diet or culinary philosophy. We are still experimenting with the guidelines and trying to stretch the limitations. We want a maintainable diet that is in keeping with our environmental and monetary concerns. I imagine that the recipes I put on here will be a little different but hopefully still in keeping with the frugal eco-tarian (I made that word up but somebody already beat me to it) nature of this blog. I hope you will continue to visit and bear with me as I learn to live *mostly* sugar-free (just don’t pass any judgment if you see me at the Dairy Queen).

You know I love you, that’s why I wrote. Show some love and write me back! I look forward to hearing how diet has effected your lives as well. Maybe you have a sugar-free recipe to share. Or you could just chew me out for holding back something I’ve been going through all year.

Update November 2011: When I wrote this post over a year ago, I never imagined it would get so many hits. I have to admit I was still a little bummed about my diagnosis and I wasn’t holding out much hope for remission. Now I am pregnant and happy to say my IC is in remission! I pictured pregnancy making the pain worse, as the baby bears down on the bladder but it seems to have had the opposite effect! I am certainly enjoying getting to eat whatever I please pain-free, but don’t worry, I am choosing wisely for the baby!


6 Responses to “Interstitial Cystitis: A Dietary Challenge”

  1. Tabatha Says:

    you should check out Stevia. it is a little on the pricier side and doesn’t taste exactly like sugar, but I have used it a few times in lemonade or limeade and it tasted good to me. My bf didn’t like it in his coffee though(before he gave it up).

    • Frances Says:

      Hi Tabatha! I’ve been doing a little research on artificial sweeteners. I read that studies have shown Stevia caused lowered sperm count and impotence. I’m not a fan! That being said, I used to hate Stevia for the taste of it, but then I tried NuStevia. It has a non-bitter aftertaste and tastes a lot like other sweeteners. It’s available online and in some health food stores.

  2. Cliona Says:

    Oh wow, that’s amazing that changing your diet made your pain go away. This might be a weird question, but do you find your moods are affected by what you eat? I’ve read a lot about certain foods being good for treating depression and the recommendations sound similar to the South Beach diet. (and I’m such a bad reader! I ate two big cupcakes while reading that!)

    • Frances Says:

      I think it’s a good diet for overall wellness but as far as depression is concerned I think exercise would have a more profound and lasting effect. Together the two should do wonders for anyone!

      P.S. The South Beach (Good-Carbs) diet also allows occasional treats and cheats to keep you from falling off the wagon. Constantly having to turn down your favorite foods for a diet (or a health problem) is a recipe for depression and self-pity or failure in my book, especially when the change is forever.

  3. Jennifer Says:

    I’ve been reading the book Eat Fat, Lose Fat which talks about incorporating coconut oil and other good-for-you fats into your diet to help lose/maintain weight. Since I started using coconut oil, I’ve noticed I don’t crave sugar and starches all the time, and I’m not always snacking because I’m satisfied for longer. That’s saying a lot, because I’m usually eating just an hour or two after meals. Coconut oil is supposed to help with blood sugar issues (among many other things).

    Good luck with staying on track!

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