Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bladder/pelvic Pain With Celiacs?


lookingforanswers17

Recommended Posts

lookingforanswers17 Apprentice

Word of warning.... this is a long post but I just needed to vent and hopefully get some advice. Thanks in advance for you're help. Still waiting on my celiacs bloodwork but I feel like I'm finally making progress on getting a diagnois. I have a question though about bladder pain. When all my GI symptoms began I also got bladder pain. My bladder often hurts especially after gluten containing foods, alcohol, or consuming artificial sweetners. I've seen several urologists but they just dismis my symptoms. My family doctor suggested I may have Interstitial cystis but the urologist never tested for it. I'm a 22 year old male so he thought it would be highly unlikely I had it. All the symptoms started with the other celiacs symptoms I have. Not only will my bladder hurt but my whole pelvis will hurt and it is really annoying. Anyone else had these symptoms with celiacs? Could I have celiacs and cystis or could celiacs alone cause the problems. I just ordered the product prelief? Anyone taken it? I've hurt it really helps with IC so I figure I have nothing to lose. I'm not giving up until I feel normal again. Even if I have to see a million doctors. I just believe all my symptoms to be related somehow because they all started at the same time. Back pain in the SI joint which won't heal even after months of PT and chiropractic visits/ Abdominal pain/ibs symptoms which I refuse to believe is simply IBS and all the urologial symptoms along with anxiety and depression that started at the same time. Sorry this is such a long post. I'm just frustrated and looking for answers. I have trouble getting the docs to take me serious because I don't look sick but I truly feel terrible everyday and I know its not all in my head. Something is wrong and I want/need to know what it is. Hopefully celiacs will be my answer. I don't wish to have anything but I want a name for what I am going through so that I can begin to heal. I'm so tired of being sick with know reason why.


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



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

Hi

I'm not sure this site will accept this link but it has helped me so much

Have you looked into cutting foods with a high oxalate content in them

here is the link

This site covers so many areas but the link is to the main file for areas of info.

good luck

Open Original Shared Link

Judy in Philly

whitball Explorer

You need to find a Urologist that will take you seriously. Many doctors have forgotten that they work for us, not the other way around. You might need to remind them once or twice of that fact. I have done this when I have been referred to specialists. I treat the first meeting as an interview and make my expectations clear. Makes a few of the "medical gods" nervous though. Many of us have both Celiac disease and interstitial cystitis. You will need to be as diligent with your bladder as you are with being a Celiac. Pay attention to caffeine, acidic fruits, sodas, tomatoes,etc to see if these are causing your pain.

  • 1 month later...
anemonegirl Newbie

I have had the same problem w/ my bladder. I used to take Prelief and it works! Avoid acidic foods and you will do much better. I don't know if Celiac and Interstitial Bladder have anything in common but I experience them both (gluten sensitivity). Good luck!

-AnemoneGirl

glutenfreewithease Rookie
Word of warning.... this is a long post but I just needed to vent and hopefully get some advice. Thanks in advance for you're help. Still waiting on my celiacs bloodwork but I feel like I'm finally making progress on getting a diagnois. I have a question though about bladder pain. When all my GI symptoms began I also got bladder pain. My bladder often hurts especially after gluten containing foods, alcohol, or consuming artificial sweetners. I've seen several urologists but they just dismis my symptoms. My family doctor suggested I may have Interstitial cystis but the urologist never tested for it. I'm a 22 year old male so he thought it would be highly unlikely I had it. All the symptoms started with the other celiacs symptoms I have. Not only will my bladder hurt but my whole pelvis will hurt and it is really annoying. Anyone else had these symptoms with celiacs? Could I have celiacs and cystis or could celiacs alone cause the problems. I just ordered the product prelief? Anyone taken it? I've hurt it really helps with IC so I figure I have nothing to lose. I'm not giving up until I feel normal again. Even if I have to see a million doctors. I just believe all my symptoms to be related somehow because they all started at the same time. Back pain in the SI joint which won't heal even after months of PT and chiropractic visits/ Abdominal pain/ibs symptoms which I refuse to believe is simply IBS and all the urologial symptoms along with anxiety and depression that started at the same time. Sorry this is such a long post. I'm just frustrated and looking for answers. I have trouble getting the docs to take me serious because I don't look sick but I truly feel terrible everyday and I know its not all in my head. Something is wrong and I want/need to know what it is. Hopefully celiacs will be my answer. I don't wish to have anything but I want a name for what I am going through so that I can begin to heal. I'm so tired of being sick with know reason why.

Yes! I too have had the bladder irritation. Years before my celic diagnosis I suffered badly and if I ate the wrong foods including herbs my bladder would spasm and the pain and irritation was uncomfortable. I believe now in retrospect that gluten has something to do with it and so does the other chemical and food sensitivities that I have. I drink 100% Organic cranberry juice 4-5 times a week or juice my own cranberries. I do water it down. It is a bit tart, however I mix it with water till I can tolerate it. Now it's easy to drink more. I haven't had any bladder issues, knock on wood, in several months now. My mom suffers regularly with bladder issues and swears by Azo Standard - she is just now being diagnosed celiac after 57 years! So, I'm not sure if the Azo Standard that you can by at your pharmacy is gluten free though. I'm not a pill taker so I could never get the medicine from my hand to my mouth! LOL

Wish you all the best.

leethinker Rookie

This thread is amazing me... I haven't been officially diagnosed but I think I have celiac. And I'm just realizing that my chronic cystitis I used to get might be related!?! That's crazy!

I used to have really bad, chronic cystitis (I'm talking at least 2 times a month!). Thank goodness that has gone away a long time ago but I just wanted to post here. I am really shocked to hear that the two things might be related!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...