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Bladder/pelvic Pain With Celiacs?

lookingforanswers17

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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.

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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!

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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