Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Interstitial Cystitis/painful Bladder Syndrome

BelleVie

By BelleVie
in Related Issues & Disorders

Recommended Posts

BelleVie Enthusiast
BelleVie
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

I was diagnosed with IC when I was 18 and still deal with it.  The best website is Open Original Shared Link (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.

BelleVie Enthusiast
BelleVie
Posted
  • Author

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! 

1desperateladysaved Proficient
1desperateladysaved
Posted

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!

KCG91 Enthusiast
KCG91
Posted

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! 

BelleVie Enthusiast
BelleVie
Posted
  • Author

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! 

KCG91 Enthusiast
KCG91
Posted

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 https://www.celiac.com/forums/topic/105908-can-constipation-make-you-toxic/

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mommyto2kids Collaborator
mommyto2kids
Posted

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. 

answerseeker Enthusiast
answerseeker
Posted

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!

BelleVie Enthusiast
BelleVie
Posted
  • Author

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.  :)

BelleVie Enthusiast
BelleVie
Posted
  • Author

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!!

KCG91 Enthusiast
KCG91
Posted

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! 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not...
    2. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas). Electrolytes may become unbalanced, so monitoring is needed as well. Just to rule out Thiamine deficiency...
    3. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,056
    • Most Online (within 30 mins)
      10,442
    Faiga
    Newest Member
    Faiga
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
×
×
  • Create New...