Jump to content

IC worse on W30


Recommended Posts

I was diagnosed with Interstitial cystitis(IC) about 3 years ago and prescribed Elmiron, but I'm not a believer in taking medications and being on them forever, so I never started the drug. I tried to educate myself and elliminate the food triggers. One main trigger was alcohol and that was really the only one that ever brought on painful episodes of feeling like I have a bladder infection, waking in the middle of the night multiple times with my bladder hurting, and having to pee all the time. I've been overweight most of my life. About 8 years ago I went from 236 lbs to 180 using the 6 week body makeover, but it has slowly crept back on and I surpassed my OMG weight of 200 all the way to 220. I've tried to be a low carb eater for about 7 years off and on and mainly drank water and sports drinks. I started running in 5Ks in February of this year and am now training for a 1/2 marathon, but the weight has not budged. It has actually gone up and i've been to several endocrinologists with not luck. They all say my numbers are perfect. BP is around 106/60 Pulse around 60 A1c around 5. The IC seemed to be under control unless I drank a little too much. About 3 months ago I decided to try the Whole 30. I thought I ate healthy before and was always told I was a healthy eater, but little did I know most of my food was processed and filled with hidden ingredients. I am now on my 3rd round of the Whole 30 and have lost 26 lbs. I plan on doing this until I reach my goal weight and then be strictly paleo. I didn't really go through any detox symptoms and now I am only drinking water with the occasional herbal tea. I have noticed in the last 2 months that my IC has gotten increasingly worse instead of better. I've tried to pinpoint the foods that could be doing this, but no such luck. I can't understand why this would happen now that I am eating clean 100% of the time. You guys do an awesome job and would love for you to start a podcast. We've started our own Whole 30 group here locally and have seen amazing results. typical daily meals are breakfast 3 eggs cooked in coconut oil with spinach and a green juice of spinach, kale, cucumber, and apple. Lunch and dinner is usually an organic/grass fed meat with satueed veggies or soup, like cabbage soup or chili. I do not do any supplements, I have fruit and avocados about 3 times a week, and banana "ice cream" about 3 times a week. I try to eat sauerkraut at least once a week and I run 3-5 miles 3x a week. Any thoughts or suggestions are greatly appreciated, or do you know of any supplements that might help?

Link to comment
Share on other sites

  • Moderators

PubMed says, "There is no cure for IC, and there are no standard treatments that are known to be effective for most patients. Results vary from person to person. Treatment is based on trial and error until you find relief." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001508/

That sucks!

The article does say that changes in diet may help and then lists a range of foods that some people have found should be avoided (see below). You are eating some of these foods, so maybe you should cut them out and see if it helps.

You might also benefit from taking the prescribed medication for a few months. Your body might be able to heal with a little help. I understand not wanting to take a medication forever, but never trying it even for a period sounds like a bad idea to me.


  • Aged cheeses

  • Alcohol

  • Artificial sweeteners

  • Chocolate

  • Citrus juices

  • Coffee

  • Cranberry juice (Note: Although cranberry juice is often recommended for urinary tract infections, it can make IC symptoms worse.)

  • Fava and lima beans

  • Meats that are cured, processed, smoked, canned, aged, or that contain nitrites

  • Most fruits except blueberries, honeydew melon, and pears

  • Nuts except almonds, cashews, and pine nuts

  • Onions

  • Rye bread

  • Seasonings that contain MSG

  • Sour cream

  • Sourdough bread

  • Soy

  • Tea

  • Tofu

  • Tomatoes

  • Yogurt

Link to comment
Share on other sites

The only things I'm eating from that list are fruit, onions, and tomatoes. I just find it hard to understand why this new lifestyle is making it worse. It's supposed to be making it better. I was eating those things before too with no out breaks. I guess I will switch from apples to pears and take out onions and tomatoes even though I don't eat them often, and see if that helps. Thanks for your response.

Link to comment
Share on other sites

You're eating bananas, too, and you could try cutting out the herbal teas until you figure out what is going on. Good luck. It's a shame that someone eating as healthy as you are is still having difficulty.

Link to comment
Share on other sites

After talking to others in the field, I have a few things I'm going to try. I will be sure to post, if I find a solution or the reason for this madness. I was hoping someone had the same problem, but I'm used to being the guinnea pig. :) Thanks for all the responses. Herbal Tea and bananas were something I also ate before whole 30, but trial and error, here we come!

Link to comment
Share on other sites

Hi prof10au - any updates? I actually came on here today to see if there was any information on IC. I have been having a flare-up and I was looking to see if anyone had improvements by doing a Whole30. I attempted my first Whole30 back in September but it gave me a horrible IBS flare. I went to to doctor and found out that it's due to the high fat content in the foods I was eating. Which is basically the whole program!

Anyway - just wondered how you are doing. Starting tomorrow I am quitting coffee, citrus, carbonated drinks (which I don't have often), any tomato based food, and chocolate. Would love to hear how you've been!

Link to comment
Share on other sites

I have tried adding a probiotic and started taking D-mannose while removing all fruits and it still hasn't helped. I don't do coffee, citrus, or carbonated drinks, but I do love my chocolate. I use tomatoes sparingly so I can't imagine that being the issue either. I hope it's not the high fat content. Not something I wanted to hear. I would think with IBS you really need to focus on healing your gut which could take months. I'm still working on that and hoping that will help my issue. I've also decided I need to start a food journal and rate my flare ups to see if I can figure out what it is. I'm still on the program and just dealing with it and still searching for some answers. Thanks for your input. Good Luck!

Link to comment
Share on other sites

I've been researching the GAPS diet and found some good info on IC. It looks like since the condition gets worse it could possibly be die off and I am on the right track with probiotics, but looks like I will need to find a good holistic doctor to help me with the dosage. I don't think high dosage of probiotics is something I should be administering to myself. I'm about to start my 4th month on W30 and the case study I read took 2 years to heal her gut which led to no more IC issues, so it looks like I'm in for the long haul. Here is the link if anyone is interested.

Link to comment
Share on other sites

  • 11 months later...
  • 2 weeks later...

Have you tried horsetail? It's a herb not sure where from. A doctor put me on to it years ago and it works 100% for me. I take it as I need and if I have a flare it works in about 90 mins. It's hard to find in shops but easy on Internet. Goggle IC and horsetail you should get lots of blog posts etc. I am only on my third day of diet so haven't seen any difference which isn't surprising. Good luck finding a treatment it's a painful condition,

Link to comment
Share on other sites

  • 4 months later...

I got complete relief from my IC symptoms when I started the paleo autoimmune protocol (it's basically a W30 plus some other restrictions...try googling for more info.) A W30 by itself was not enough to give me relief. 

 

One thing that helped me a great deal was an iPhone app called Food Allergy Detective. In the app, you just check off what you're eating, and whenever you have symptoms, you check them off, too. The app correlates the food you ate with the times you have symptoms, and when enough data is compiled, it's able to tell you what you are most likely sensitive to. (By the way, I have no affiliation whatsoever with this app.)

 

The things the app identified me as being sensitive to just so happened to be the very foods on the paleo autoimmune protocol, which I don't think is an accident -- especially given the fact that the allergy app has nothing to do with the paleo world.  

 

I'm thankful to God for my urologist (who told me to go on an elimination diet in the first place), for the app, for the paleo autoimmune protocol, and for the Whole 30. Together, all these things have been life changing for me!

 

I truly hope you will also be able to find a solution that works for you. One thing I've noticed is that everyone is different, and we all have to keep experimenting and learning until we learn what works for our own health. 

 

 

Link to comment
Share on other sites

  • 8 months later...

Hi Prof10au.  I realize this is an old post but thought I would check in as a newbie.  I have IC as well and have had trouble pinpointing triggers.  I have been eating clean and would like to start the Whole30 to help in eliminating triggers.

 

Stress and hormonal changes are HUGE triggers for me.  Could that be an issue for you?  One thing I would recommend is small flowered willow herb tea.  It was found by famous herbalist Maria Treben to CURE protatitis and bladder cancer.  Crazy but true.  I have also come across at least one person that has cured her IC with this tea.  There may be no cure in the realm of modern medications and surgery but it doesn't mean our bodies can't be healed.  I take a probiotic and that seems to be helping.  I am waiting for my willow herb in the mail and I will post an update after I drink it for awhile.  IC is a crappy disease and I hope we can all find relief!

Link to comment
Share on other sites

Oh, another thing I should mention is that I was advise to cut out nightshades along with the list above.  That means any kind of pepper (including bell), potatoes, etc.  Seed based spices can also be a problem so be careful of what you are putting in that chili! :)

Link to comment
Share on other sites

  • 3 months later...

I would love to hear any updates on IC and W30. I am getting ready to start and a little nervous about all the fruits and veggies. So many can be triggers. I do take Elmiron and have had success with it lessening my pain, but the IC still flares and who can know why? Even vigilant journaling has not helped me determine a cause.

Link to comment
Share on other sites

I was diagnosed with Interstitial cystitis(IC) about 3 years ago and prescribed Elmiron, but I'm not a believer in taking medications and being on them forever, so I never started the drug. I tried to educate myself and elliminate the food triggers. One main trigger was alcohol and that was really the only one that ever brought on painful episodes of feeling like I have a bladder infection, waking in the middle of the night multiple times with my bladder hurting, and having to pee all the time. I've been overweight most of my life. About 8 years ago I went from 236 lbs to 180 using the 6 week body makeover, but it has slowly crept back on and I surpassed my OMG weight of 200 all the way to 220. I've tried to be a low carb eater for about 7 years off and on and mainly drank water and sports drinks. I started running in 5Ks in February of this year and am now training for a 1/2 marathon, but the weight has not budged. It has actually gone up and i've been to several endocrinologists with not luck. They all say my numbers are perfect. BP is around 106/60 Pulse around 60 A1c around 5. The IC seemed to be under control unless I drank a little too much. About 3 months ago I decided to try the Whole 30. I thought I ate healthy before and was always told I was a healthy eater, but little did I know most of my food was processed and filled with hidden ingredients. I am now on my 3rd round of the Whole 30 and have lost 26 lbs. I plan on doing this until I reach my goal weight and then be strictly paleo. I didn't really go through any detox symptoms and now I am only drinking water with the occasional herbal tea. I have noticed in the last 2 months that my IC has gotten increasingly worse instead of better. I've tried to pinpoint the foods that could be doing this, but no such luck. I can't understand why this would happen now that I am eating clean 100% of the time. You guys do an awesome job and would love for you to start a podcast. We've started our own Whole 30 group here locally and have seen amazing results. typical daily meals are breakfast 3 eggs cooked in coconut oil with spinach and a green juice of spinach, kale, cucumber, and apple. Lunch and dinner is usually an organic/grass fed meat with satueed veggies or soup, like cabbage soup or chili. I do not do any supplements, I have fruit and avocados about 3 times a week, and banana "ice cream" about 3 times a week. I try to eat sauerkraut at least once a week and I run 3-5 miles 3x a week. Any thoughts or suggestions are greatly appreciated, or do you know of any supplements that might help?

 

  This won't sound right but I was so excited to see your post-- I say that becasue I have IC and when I clicked on this board I figured no one else would have IC and then your post was at the top of the board- meant to be?  Ok I have had IC for 18 years (since I graduated from high school : (  Many people with IC are triggered by apples (especially green) any nightshade (even a little tomatoes- a better choice would be homegrown low acid yellow tomatoes which some ICers can tolerate, the potyassium in banannas(maybe try sticking to pears and blueberries only for a period of time to see if that helps at all),  and eggs are a no no on the Paleo autoimmune protocol (I am getting ready to start a whole 30AIP in hopes that it will help my IC).  I'm not sure what you are putting in your chili but I can't think of anything you could put in there that would be both whole thirty and IC freindly other than beef (no spices, tomatoes, onions, beans, -what do you make it with??)  I will say that I went paleo for about two months and had great imporvement with my symptoms, I fell back inot my old ways and my husband and friend keep telling me how much better I was when I was eating Paleo (and they weren't exactly paleo fans to start with so that is saying something).  This is such a rough condition to have since what "cures" one person makes the next person more sick (I can barely walk after having instillations). 

  It is so tough to figure out what is the thing triggering you- it could have nothing to do with food- secondhand smoke, stress, a new "partner", washing your delicates in a new soap, so many things can upset the apple cart.  I'm crossing my fingers for you.

 

   I can't wait to check out the allergy detective app someone mentioned above- what a great tool- thank you! 

  I was also looking at the GAPS diet but I think I am going to start with the AIP and maybe incorporate parts of the GAPS diet where it makes sense- I have been drinking bone broth daily and that seems to have a positive effect on my health for certain.  In my years I have found that many things help for 6 months or so and then stop working and I have to find something else so hopefully this lifestyle change will be more long lasting than the minimal results I have seen from the pharma treatments.  If you or any of the other IC posters want to talk feel free to PM me.  We should start an IC check in- I'm going to post a thread and see if I can get IC peeps to post with their experince and maybe we can help eachother along.  wishing you the best

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...