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Interstitial Cystitis/painful Bladder Syndrome
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Does anyone have experience with this? Over the past six months or so, I've started noticing the feeling of what I thought was a UTI coming on. The first time it happened, I felt so panicked with the pain that I went straight to the doctor, who did a urine sample and found that I had a very slight bladder infection. I took a round of antibiotics, but still had the pain. Another round of antibiotics. Still pain. There's no way my body still had an infection after those pills! 

 

Now I'm having the pain every few days. It feels like a burning sensation, not when I go to the bathroom, but just when I'm sitting there or laying down. I read on a forum somewhere that someone traced their symptoms to consumption of artificial sugar, so I'm trying to pay attention to that to see if this is the problem. 

 

Any advice on how to treat? I went back to the gynecologist before, and he said that everything is perfectly fine. He even did an ultrasound and found nothing out of the ordinary. 

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I was diagnosed with IC when I was 18 and still deal with it.  The best website is http://www.ichelp.org/icdiet (that is their page on diet)  They used to recommend cutting out acidic foods, spicy foods and such, but now they don't give as many specific guidelines.  I would definitely recommend keeping a food journal to see if you are able to link symptoms to something you are eating, though.  

 

Also, if you do not have an official diagnosis of I.C., I would definitely go see a urologist.  Before I saw a urologist, I went to a gynecologist over and over repeating the same tests until she brought up I.C.  Not a lot of doctors know much about it, kind of like celiac.  But it is definitely something you cannot self-diagnose.  You need a cystoscopy of the bladder to rule out other things that can cause these symptoms.  I was also sent for an MRI of the pelvis to rule out any abnormal structures in the bladder/urethra.  A cystoscopy of the bladder sounds scary, but if you have ever been through a routine pelvic exam/pap smear, it is less invasive than that, and they do it in their office.  Basically they numb your "area" with a paste (no shots or needles), then put a small scope up there, and they fill your bladder with water so they can get a good look at the walls of it.  Took about a minute.

 

There are a few medicines and even physical therapy for it, but I found nothing helped me.  I did not try the physical therapy, though.  The one thing that will trigger symptoms for me is holding it too long.  Other than that, I have just learned to live with it.  However, I worked with a lady who saw great improvement on the diet.

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Wow, thank you for that information. I haven't had a diagnosis, I just did a lot of research and came to the conclusion that IC is the most likely issue. You're right that I should get it checked out by a doctor. I may eventually, if it doesn't calm down, but for right now, I am just so, so, so tired of doctors and hospitals. I need a break for a while! 

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I have had extreme bladder irritation at time.  I got checked for bladder infections, but it was negative.  The doctor thought to stick a tube up to see if the bladder was irritated.  I said, it is irritated, so what do we do then.  They had a drug for it  I would not consider that until I looked up how to get to the root of the problem.  I saw information as above about controlling it with diet.  At the time I already shunned 7/10 foods they recommended to cut, so I eliminated the other three.  I still had episodes; however, going gluten free on top of that seemed to give my bladder peace at last!

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I had recurrent cystitis for 8 months a few years ago (around the time I think my celiac disease was triggered). They never really got to the bottom of what was causing it but in the eighth month three things happened and it went away. One, they did a cystoscopy of the bladder. Didn't find anything but it didn't hurt any more after that. Two, an auntie (cringe) suggested that my boyfriend and I go back to using condoms instead of just the Pill in case all the 'ick' was causing problems (it worked for her) and three, as you've already read, I cut down on sugar. So I have no idea which of those it was but something clicked and I haven't had a problem for about 18 months. I really feel for you though, UTIs and the like are horrible! 

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Yeah, it really isn't fun to feel constant burning and irritation down there, and with no medical reason! I've started a round of oregano oil to kill off anything IF there is even the smallest infection. I'm cutting all white sugar for the next few weeks (sniff…baking is my culinary sanctuary…), and I may consider the condom issue. :) I do have a paragard IUD and have wondered if that could be part of the irritation.  In the words of my mother, "It just ain't natural!" to have something in your body like that, but it's the best option I have at this point in life.  :)

 

Katie, just a question, did you notice if white rice caused your bladder to act up? I'm in the middle of a three day flare up, and I've been eating white jasmine rice for the past few days, which I know is full of sugar. I just wasn't sure if the sugars in potatoes and rice would have the same effects as table sugar. 

 

Thanks! 

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Haha mothers and hormonal contraceptives... Mine is oh-so-suspicious! Just for the record I didn't notice a link between the cystitis and my going on/coming off the Pill. I wasn't paying enough attention to my diet at the time to notice anything to do with rice, sorry! How's it going now?

Just seen this thread with an interesting story about constipation and UTIs. Might not be relevant to you but it rang a few bells with me as C was pretty much my only digestive symptom http://www.celiac.com/gluten-free/topic/105908-can-constipation-make-you-toxic/

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Cut out all tea, soda, alcohol and see if that helps. I was given a hormonal cream to put up in the vaginal area and my IC symptoms are most of the time gone. Watch acidic foods and drinks too. 

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I was in the ER a week ago with extreme pain and blood and protein in the urine. Doc said either a kidney stone, UTI that spread to kidneys, or possibly IC.

 

I finished my round of Bactrim but if it comes back I'm going to ask again about the IC. Interesting how I just went through this same thing!

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So update to this: I went to the doctor again with the burning pain. He did a urine test. Found nothing. Again. I could not bear the thought of another hospital visit, and having a cystoctopy (spelling?) sounded terrible, SO my friend recommended taking an essential oil called "thieves oil." It's a blend of cinnamon, oregano, cloves, and maybe something else. It's made by Young Living, which from what I understand is one of the few companies that make oil that is pure enough to actually consume. I love holistic treatments, but I also approach them with a healthy amount of skepticism. I took one drop of the oil mixed with a glass of water every few hours for two days. By the end of the first day, I was feeling better. By the end of the second day, the burning was completely gone and I felt completely normal. I haven't had the pain since. I am so glad that it seems this is not IC, AND that the oil seems to have helped.  :)

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And KCG91, rice seems to cause it to flare sometimes, but then seems to make no difference at other times. I think it could also be that my body is still in crazy post-gluten, celiac recovering reaction mode. Who knows? But I'm going to try some rice this weekend to see how I feel. I'm beginning to come around to the idea of being grain free, though. It sounds wonderful, but baking bread and sweet things is seriously the only awesome thing I can still do in my diet! That and coffee. And so help me if I ever have to give up coffee. I'm so grateful that the oils worked, because cutting out caffeine would have been the next step to try and resolve the issue!!

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So glad you've got it sorted :) I know what you mean about grains and coffee... If you wanted to cut grains out/down look up Elana's Pantry for grain-free baking :) It can be done! 

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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