Celiacs & Bladder Issues

[crl42]

Hi everyone,

 

I am unsure if I have Celiacs or even gluten issues. For the past year I have had a constant sense of urinary urgency/frequency - it basically feels like I kind of have to pee all the time.

 

Throughout the past year I have exhausted every single traditional urological issue, even having surgery to fix it. Nothing has helped at all. I have even been going to the Cleveland Clinic since May which is the number one urologic institution in the country. I’m a 27 year old male & since I have no bladder pain they have no idea what to do with me.

 

Lately I had read a few random internet posts where people described my symptoms & said cutting back on gluten got rid of them. 

 

I’m now wondering if my bladder issues are secondary & are stemming from some kind of gluten intolerance or even Celiac. Some other background information - for the past 3 or so years I have had some strange but not super bothersome gastrointestinal issues. I will go poop usually 4 to 5 small poops a day, and will often get sharp pain that feels like I have to poop but nothing will come out. I also have had a lot of anxiety, some nausea, sleep issues, and a strange unexplained rash on my back. Also, if I press in certain spots of my abdomen under the belly button I get a sharp ish pain.

 

I’m not sure what I’m looking to hear back from this post. I have never brought these other symptoms up to doctors because they seemed unrelated & weren’t super bothersome, but now I’m wondering if they could be related to my urinary issues? Could gluten issues have caused inflammation in or around the bladder? Could it have something to do with my small intestine pushing against my bladder & giving me the urgency sensation? Is there something else I should consider? 

 

I guess I’m just looking to hear from someone with a similar experience or get some advice on what to say to a doctor about all of this. There seems to be some info on Celiac/Gluten & the Bladder but not a lot.

 

Thanks for reading

Cody

[cyclinglady]

Welcome!  The only way to find out if you have celiac disease is to get tested:  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Make sure you continue to consume gluten until all testing is complete.  

Celiac disease is systemic and affects many different organ systems beyond the GI tract.  

I wish you well.  

[knitty kitty]

There's an itchy rash associated with Celiac called Dermatitis Herpetiformis (DH).  You could have the rash you mentioned biopsied by a dermatologist who is familiar with diagnosing DH.  A confirmed DH diagnosis is confirmed Celiac Disease.  

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

Also, have you had your Vitamin D level checked?  Low vitamin D is associated with bladder incontinence/urgency/frequency.  And B12 deficiency can cause incontinence/urgency issues as well.  These two vitamins are frequently low in people with Celiac.  

I'm one of those Celiacs that had vitamin deficiencies before diagnosis.  I also had anxiety and  sleep issues (insomnia and oversleeping both).  Thankfully, these issues and others usually will resolve on a gluten free diet.  

Hope this helps! 

[Elo-queezy]

That's so interesting. I definitely think they could all be related. I'm a nurse, and have had a long history of gut issues and food intolerances. My boyfriend, however, I'm pretty sure is celiac. We are waiting for testing. 

And one thing that he often complains about is a weird urgency to pee, and then afterwards he feels "too empty" and the general sensation  in his abdomen from the release generates some nausea. 

He also has bad anxiety, extreme mood swings, has been on antidepressants for years and has significant sleep issues too.

Still so much more for the world to learn about the disease. I really hope you get some answers my friend, and find a new lease on life once gluten is gone from your life :)

[Ranchers Wife]

So first, I definitely have bladder urgency issues that are triggered by gluten consumption.

I get urgency, very bad cramps, and will have blood in the urine when it is really bad.

I have been to the ER and to a urologist for the issue, and they just sort of said, sorry, we don't know what to do. At the time of medical attention, I did not know that I had a problem with gluten.

Heavy lifting, or being horseback for six or more hours in a day will also trigger the bladder issues. I live on a ranch, so moving 50 pound bags of feed, salt, seed etc isn't uncommon, nor are the long rides. Right now, I can move maybe 300 pounds of whatever in a day (50 lb at a time) or ride for six hours, and get some transient bladder urgency that goes away within a few hours of rest.

If you add gluten, I can move 50 pounds once, or ride for an hour, and end up peeing blood. Then I am sitting quietly or in bed for 24 hours before it quits.

Unfortunately, I did not figure out that I was extremely sensitive to gluten until I was on a very, very low gluten diet. I assume that I am Celiac, as I have other symptoms that can be triggered by very low gluten exposure, such as inhaling a bit of wheat dust. I am unwilling to go back to consuming gluten for a gluten challenge, and possible diagnosis, because I know what gluten exposure does to me and I need to continue to be able to work.

Anyway, I would suggest that you attempt to get Celiac either diagnosed or firmly ruled out. 

In order to do that, you need to first continue consuming gluten, and second go find a doctor that is very, very well educated and experienced and completely up to date with Celiac disease. That's the hard one. Do consider travelling to a clinic that is associated with Celiac research, such as Harvard or University of Chicago.

Next, if you do have Celiac disease then the rash could be Dermatitis Herpetifomis. A DH rash will many times have Celiac antibodies that can be identified by a skin biopsy. The rash and positive skin biopsy combined are a firm diagnosis of Celiac disease. Unfortunately, you would have to find a very well educated dermatologist to do things right... for example, you have to take biopsy samples right next to the rash, not of the rash itself. Also, you must be consuming gluten and have been, for several months, for the antibodies to be likely to show up. And then, to really complicate things, any bit of steroid, topical or systemic or both, that you might have been given for the rash, can make the antibody tests show up negative.

 

So my best advice, is spend the time and money to get very good medical attention and testing for Celiac.

Once that is done, with either positive or negative results, you can go gluten free and see if that helps your bladder issues.

[Ranchers Wife]

Oh, and to be clear, "cutting back on gluten" to see if things improve can be very confusing and misleading move.

If you do indeed have Celiac disease, you have to be pretty much zero tolerance, no gluten ever, no dishes or utensils touching gluten, to keep the autoimmune response at zero. In other words, just picking the croutons off a salad is not adequate gluten avoidance for someone who has Celiac disease.

There are some people who simply avoid, or cut down on gluten, and have reduction in symptoms. The kicker, though, is that if you don't have testing for Celiac disease before you cut down on gluten consumption, you open a whole ugly can of worms in which it may be untenable to do testing in the future, or you might have Celiac disease , never consider testing, and just cutting down isn't adequate to avoid serious autoimmune issues in the future.

 

Cut back or carefully eliminate gluten, AFTER you have been tested for Celiac disease by a Celiac- knowledgeable and current doctor.

[Whitepaw]

Also look at additives in your food, meds, and beverages.  Dyes can be particularly troublesome for bladders, but flavoring and other additives can, too.