Jump to content

  • 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
lookingforanswers17
Posted

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
Judyin Philly
Posted

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
whitball
Posted

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
anemonegirl
Posted

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
glutenfreewithease
Posted
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
leethinker
Posted

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.

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. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,399
    • Most Online (within 30 mins)
      7,748
    Hoyt Marquis
    Newest Member
    Hoyt Marquis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.