What if food is not a trigger - still IC?

[Mimi_jones]

Well. I'm on a referral to see a urologist (6-10 month wait - YAY Canada!) but I don't hold much hope because I've had a cytography a few years ago and my bladder was perfectly healthy; he's doing a cystometrogram this time, so I don't know if that makes any difference. I'm trying to get my doctor to order a laparoscopy to exclude/prove the possibility that I have adhesions from my caesaran and then my hysterectomy - that will also be a 10 month wait, if I'm lucky.

Anyway, I've been monitoring my diet VERY strictly for 2 weeks now. Nothing processed, no trigger foods, basically it's been chicken and rice. One day I can eat a certain meal, whatever it is, and be completely pain free, the next day I can eat the identical food and have pain... so it can't be food triggers... can it? Why would I alternate between complete pain free to bad pain from day to day, or, sometimes, I can wake up with bad pain but by supper time am fine?

The antispasmodics I was prescribed do take the pain away pretty fast, I wonder what that means?

[GriffsMommy]

It's so hard to say but not everyone is food sensitive. I have some food sensitivity but not a lot. I can eat a lot of things that other ICer's say will through them into a major flare. I can eat mayo, many other's can't, I can eat mustard, even pizza.
I have found a few things that still bother me such as green tea and I think some salsa I had on Saturday was a no no but in general I can eat a lot of the things that usually trigger IC people. Just because you're not very sensitive to foods does not mean that you don't have IC. I had a hydro/cysto w/ bladder biopsy so my IC is confirmed and in most cases food doesn't bother me. You probably won't know for sure if you have it until you get in to see the uro and they do some tests.

[Mimi_jones]

Oh. what did they find in your tests that allowed them to diagnose IC? My doctor thinks it's not real.

I thought food was always a trigger? How did you find out what your trigger foods are when most food doesn't bother you? Like, I can be pain free and eat something that does NOT give me pain, but the next day that exact same food WILL give me pain - which means it can't be the food triggering my pain, but something else... so I have no way to figure out if any foods do cause pain since sometimes they might and sometimes they might not.

I just don't understand how sometimes I can go days or months with no pain, or sometimes it comes and goes within a day, and sometimes it's pain for weeks on end... but nothing in my life changes to trigger these things. There HAS to be something that makes it come and go, it can't just come and go without some cause/trigger/thing that is consistent.

IT'S SO FREAKING FRUSTRATING!!!!!!!!!! I just want to live my life!!!! Laugh and shag and eat and run and play without this dang pain hanging over my head.

Sorry... I'm a bit upset this week.

[GriffsMommy]

I understand. I had the same problems in the begining. I would try to follow the diet and still flare and I would have no idea why. First of all stress is a big trigger for a lot of people, including me. I can eat only foods that don't trigger me and still have a flare if I'm stressed. Sex is also a huge flare for me, after sex I am pretty much sure to have a flare afterwards or at least some increased pain.
As for the food, I really couldn't tell until my dr started me on Elavil which lowered my pain some so I could tell if food was triggering it. I can usually tell now because I'm not stressed and I had something that can be a problem for people. I had green tea that was in some white iced tea and I didn't know it. The next day I had a lot of burning and frequency. At least for me, food flares tend to be more burning than anything else.
As for being diagnoised, if you have a hydro/cysto which is where they knock you out and look at your bladder with a scope while over filling it with water. For a lot of patients who have IC their bladder will start to bleed when they have this done, or they will be able to see actual uclers. For me neither one of those were seen but when they got the biopsy results back there were mast cells everywhere which is another way to show that someone has IC.
If your dr doesn't believe that it's real then maybe that's a sign to get another dr, it's real, and most of us have proof in our medical charts that we have it.

[ICNDonna]

One thing you might do is to keep a diary in which you enter everything that goes into your mouth, what time it goes into your mouth, and symptoms you are experiencing. Food sensitivities are funny things --- some foods will cause me to flare the following day, others can irritate almost immediately.

If antispasmodics help, it's very possible that you are having bladder spasms. It does sound like IC is a distinct possibility.

Warm healing thoughts,
Donna

[kadi]

Mimi,
From what I've read, 86% of IC patients have some level of dietary sensitivity.
The people I've known who have said diet is not a factor:

1. People who have so much pain all the time, they can't tell if it worsens. When they get better, they can notice peaks & valleys in their symptoms & then notice that diet matters.'

2. Patients who are on high levels of pain medication. They also may not notice a difference. I do wonder what is happening to their bladders underneath those meds if they can't feel it.

3. Patients who have not been on the diet for very long. That was me in the beginning. When I first started the diet, I hurt all the time, was very sick, didn't think it mattered what I ate. I was desperate though, so I decided to try the diet for a month. After 3 weeks on the diet, I tried a 1/2 cup of decaf black tea. My symptoms spiked hard & fast & that's when I realized it actually was helping. I guess my bladder needed to calm down from what I had been eating before I could see a difference.

4. Patients who have great success with Elmiron can sometimes return to more "normal" eating.

I don't know if these patients account for the 14% statistically who are unaffected by diet or if there truly is a small group for whom diet does not matter. There are also wide variations in how much IC symptoms are triggered by diet. (Some patients can avoid just the top 5 triggers of coffee/tea, cranberry & fruit juices, tomato, carbonated beverages, multivitamins, & are just fine. Other patients need to follow a much stricter diet.)

There are also other factors that can contribute to IC flares:
stress, sexual activity, exercise, heavy lifting, driving or riding in a car,
allergy (Spring is always worse for my IC), sleep deprivation.

Donna's suggestion of a food diary is a great idea. I did that & it made things much clearer.

Hope you are feeling better soon.

[dg2901]

I'm another one who's not very food sensitive. Like Christine, I can consume most food and beverages w/o any problems. I've done the elimination diet which proved nothing. I'm not on any pain medication however there have been many days that I wish I were, especially when all of my symptoms started (Feb 2003). I was started on Elmiron and Elavil in May 2006 and have seen marked improvement though I'm still symptomatic.
Regarding your Dr thinking that IC isnt real--whether he wants to call it IC or not, you know you're having symptoms and you deserve help in order to regain some normalcy to your ilfe. Dont let a Dr talk you out of what you're physically feeling. A lot of us on here have had to visit several Dr's before finding one who took our complaint(s) as being real. Unfortunately, patience might have to become your best friend while battling this mess. Remember though, there is help out there; dont give up.

Hopefully you'll get some answers from the urologist.
Wishing you well...
Diana

[Quinn24]

Hi Mimi,
I have no food triggers either but not because of any of the reasons someone listed above (kadi perhaps, I can't see the list as I am responding). I know I have no food triggers because sometimes it depends on the degree of IC you have. I have a moderate case.....yes I have Elavil when needed so I take on a prn basis. I have bladder pressure at times but never lasts more than a day. The only thing I have found that will irritate my bladder is some waters. Evian I find the best and my tap water if you can believe that!!! Where in Canada are you, I'm in Canada as well. You need your Urologist to do a cysto/hydro on you to really diagnose IC. We are lucky here in Canada as we do not have to pay for any procedure so get the right test done from the start.

[Charisse]

I've been trying to figure out my diet triggers since April. One week I'm convinced I have no food triggers and the next I'm flaring from everything I drink. Food seems to be okay with me -I mainly notice urgency and pain from liquids. I agree with whoever here said to cut the foods out for a good couple of weeks before reintroducing them. I still don't have a clear diagnosis so I've been working really hard at trying to figure out my pain triggers.

[soccermom32]

For me, it is more stressful for me worrying about what I'm eating that THAT brings on a flare. Stress = flare for me. When I am relaxed about my diet and eat what I want happily, I don't flare.

I juice every morning with my juicer - oranges, pineapples, strawberries, apples, carrots etc.... and I have no pain. The ONLY thing I cannot eat that I am aware of is canned tomatoes - no red sauce for me. Not even with prelief. As for fresh tomatoes though, that is fine. I find the more natural my diet the better.

I am running 5 miles everyday too. I had a flare 2 weeks ago brought on by stress - it was horrible. I kept on juicing and walking though and got through it okay.

IC is different for everyone. My doctor doesn't understand why I can eat what I eat, bc its not the "norm" or the recommended. You have to experiment for yourself. I did keep a detailed food journal for a month trying to figure it out. There was never a pattern.

Good luck!!

[ads]

I have IC and food isn't an issue for me, but trying the diet for three months can't hurt. While it appears the majority of IC patients have the problem of food bothering their bladder, some don't have the problem at all. The medical world is still trying to figure out what causes IC... Their are more questions than answers.

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[Charisse]

I am wondering if the people who don't notice foods bothering them are also the people who have no evidence of ulcers or damaged bladder lining? I know it's possible to have IC with no visual damage to the lining and am just wondering if that's why certain people don't notice that foods bother them. I have to say that with my first flare in 2000 I didn't notice that foods bothered me at all but now I'm noticing liquids like coffee and soda do seem to bug me. I have yet to have another cystoscopy to check for damage but my PST was negative. I feel fortunate that I'm able to eat tomatoes and sauces and things that many people can't.