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Long Shot - Urinary Tract Issues And Celiac

my3monkees

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my3monkees Rookie
my3monkees
Posted

Hi,

I am wondering if anyone has ever experienced urinary tract issues and Celiac. I have never been diagnosed with Celiac. But my mother and 2 of my children have. My mother has also been a type 1 diabetic for 58 yr. Also suspect that dd may have Raynauds Syndrome. So obviously family history of autoimmune issues.

I have no classic Celiac symptoms, other than frequent gas.

But what I do have is unexplained urinary issues. I have had microscopic blood in my urine for several years now. Also the last couple of cytology test have had "atypical cells". I have been assured its not cancer. I have had my kidneys and bladder scoped and scanned. Nothing has been found to cause this. I have to go for another bladder scope in a few weeks. I have been told that the atypical cells can be caused by infection or inflammation. I am just curious if this could be caused by Celiacs. I hate not having and answer. I realize the 2 being related are quite a long shot. But with the family history I figured it was worth asking the question. Thanks!!

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IrishHeart Veteran
IrishHeart
Posted

I had terrible bladder pain, spasms, frequency and was tested frequently for UTIs for several years before DX. One time, it was an infection but otherwise, the urogynecologist I saw was stumped.

It was awful and to this day, if I am glutened, I get the pain and urgency back. ugh.

Like you, my friend E and my Mom do not have terrible gastro symptoms from gluten, but suffer bladder pain and have to make several trips to the bathroom. Even then, not much came out. My friend has had blood in her urine as well.

So, IMHO yes, urinary tract issues are related to gluten.

You are obviously very knowledgable about celiac disease since you are raising two kids with it, so I will spare you the genetics lesson :lol: , but I am wondering... you have been tested right?

others have reported this issue, too:

mushroom Proficient
mushroom
Posted

Indeed there is a relationship. Read here:

Open Original Shared Link

I come from a family of celiacs and UTI sufferers. My mother, both sisters, me. It is no coincidence. In fact, mine has progressed to the point where it is methycillin resistant and therefore always present, just waiting for a chance to become a nuisance.

cahill Collaborator
cahill
Posted

Yep <_<

my3monkees Rookie
my3monkees
Posted
  • Author

I had terrible bladder pain, spasms, frequency and was tested frequently for UTIs for several years before DX. One time, it was an infection but otherwise, the urogynecologist I saw was stumped.

It was awful and to this day, if I am glutened, I get the pain and urgency back. ugh.

Like you, my friend E and my Mom do not have terrible gastro symptoms from gluten, but suffer bladder pain and have to make several trips to the bathroom. Even then, not much came out. My friend has had blood in her urine as well.

So, IMHO yes, urinary tract issues are related to gluten.

You are obviously very knowledgable about celiac disease since you are raising two kids with it, so I will spare you the genetics lesson :lol: , but I am wondering... you have been tested right?

others have reported this issue, too:

Nope, I have never been tested! I have asked, but been told without gastro symptoms, forget it! I don't have diarrhea, I'm not thin, I'm as far from thin as you can get! LOL So of course I don't have it, despite family history. I should try and find a new GP, but in this area, they all seem to be the same. Not the most progressive, forward thinking part of the country! LOL

mushroom Proficient
mushroom
Posted

Look up the symptoms of celiac disease (and this is just some of them) here: https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html print them out and take them to your doctor. He needs some education. :unsure:

IrishHeart Veteran
IrishHeart
Posted

Nope, I have never been tested! I have asked, but been told without gastro symptoms, forget it! I don't have diarrhea, I'm not thin, I'm as far from thin as you can get! LOL So of course I don't have it, despite family history. I should try and find a new GP, but in this area, they all seem to be the same. Not the most progressive, forward thinking part of the country! LOL

This is hogwash...that's the same thinking that kept me from being Dxed. (I was once overweight) and if you have a MOTHER and CHILDREN with celiac disease, you should have been screened right away!

I was "far from thin" as you say-- and then plummeted 90 lbs. and almost died.

I agree with Shroom---print off the info ---and I suggest you demand a celiac panel right away.

Many celiacs do not have overt gastro symptoms ---but other symptoms that are clues.

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1desperateladysaved Proficient
1desperateladysaved
Posted

I have traced blood in urine for 30+ years. I also had issues with urgency and frequent urination. Almost 6 months ago I went gluten free. I have not been checked yet to see if it has gone away. To be continued. There are other strings on this subject.

smpalesh Explorer
smpalesh
Posted

Have any of you with bladder issues been tested for interstitial cystitis? I was diagnosed with it after multiple tests when I was 17 years old (apparently this is quite young for an IC diagnosis). My symptoms were urgency, pain, inability to fully empty bladder, among others. I have been on medication since then and it controls these symptoms except for occasional flares. I am not diagnosed with celiac (yet, I hope) so I don't know if there is a connection at all.

shadowicewolf Proficient
shadowicewolf
Posted

Urgency and feeling like i'm going to wet myself were to things pre dx that disturbed the heck out of me. It was never a UTI either.

ndw3363 Contributor
ndw3363
Posted

Have any of you with bladder issues been tested for interstitial cystitis? I was diagnosed with it after multiple tests when I was 17 years old (apparently this is quite young for an IC diagnosis). My symptoms were urgency, pain, inability to fully empty bladder, among others. I have been on medication since then and it controls these symptoms except for occasional flares. I am not diagnosed with celiac (yet, I hope) so I don't know if there is a connection at all.

I was misdiagnosed with Interstitial Cystitis as well. It's what started this whole mess...thought I had a UTI - was put on two rounds of strong antibiotics which of course only made everything worse (Dr. said "I don't see evidence of an infection, but here take these...really???). After that was when I got the diagnosis. Read up about it and certain things never seemed to fit with how I was feeling. Refused the medication that is normally prescribed because of the harsh side effects. Took full strength Aloe which did wonders (found the recommendation on the IC website). Long story short, bc of many other symptoms, I finally hit on celiac and gluten-free. Bc of my trust issues with doctors, I decided to try gluten-free on my own. My bladder symptoms resolved along with a few others. After that, tried to get formal diagnosis, but had been gluten-free for too long. Tried the gluten challenge, but could only handle two weeks before I was so miserable that it wasn't worth it. Only time I have bladder issues now is if I get glutened or if I have too much sugar/carbs which sends my candida out of control (ate two gluten-free cupcakes last night...today I'm miserable). I do realize that IC is a real thing that many actually DO have. I'm just also saying that since there is no definitive test for it, sometimes they will give you that diagnosis when they can't figure out why you have pain with no infection.

mommida Enthusiast
mommida
Posted

My daughter was diagnosed Celiac at 17 months old. She has had all IC symptoms and numerous UTIs. The doctors are just stumped and they have tried different tests. They now say it is caused by her constant constipation. (The back up in the colon causes sensation of pressure, and the bladder is not fully emptied. The symptoms present when there is not an "infection", or lead to an infection.

MitziG Enthusiast
MitziG
Posted

Not a long shot at all. my interstitial cystitis is mostly in remission on a Gluten-free Casein-free diet. My 9 yr old son also had major bladder spasms and pain with no dx- once he was dx celiac and went gluten-free, urinary issues resolved. My celiac daughter had spasms and bedwetting until going Gluten-free Casein-free as well.

my3monkees Rookie
my3monkees
Posted
  • Author

Thanks for the reply's.

I am going to go for the scope tomorrow. I had it 2 years ago and it was fine.

I forgot to mention that before taking my son off gluten, he was running to the bathroom to pee constantly.

I just have such vague issues, microscopic blood and the atypical cells. But no discomfort or burning, unless I drink to much coffee. Or maybe I just haven't gotten to that point yet??

I will see what they say tomorrow. But in the meantime, I have taken myself off gluten. I figure it can't hurt, and it just might help.

Thanks!

IrishHeart Veteran
IrishHeart
Posted

Thanks for the reply's.

I am going to go for the scope tomorrow. I had it 2 years ago and it was fine.

I forgot to mention that before taking my son off gluten, he was running to the bathroom to pee constantly.

I just have such vague issues, microscopic blood and the atypical cells. But no discomfort or burning, unless I drink to much coffee. Or maybe I just haven't gotten to that point yet??

I will see what they say tomorrow. But in the meantime, I have taken myself off gluten. I figure it can't hurt, and it just might help.

Thanks!

IMHO, if you are looking to be tested, you should stay on gluten until the testing is done.

MitziG Enthusiast
MitziG
Posted

Yes. If you want celiac testing, you MUST continue eating gluten thru the time of endoscopy or you run a high risk of false negative.

smpalesh Explorer
smpalesh
Posted

I'm sorry, but this information is not correct. There are definitive tests to diagnose interstitial cystitis. Open Original Shared Link I had a cystoscopy and a biopsy among other tests. These tests will show damage to the bladder wall if there is interstitial cystitis. If you did not have these tests then there is no way you could be officially diagnosed with IC. If you were diagnosed with IC with no medical tests then some dr was not practicing correctly. I'm not doubting your story but I don't want anyone to believe the interstitial cystitis is simply a diagnosis of exclusion because it isn't.

I was misdiagnosed with Interstitial Cystitis as well. It's what started this whole mess...thought I had a UTI - was put on two rounds of strong antibiotics which of course only made everything worse (Dr. said "I don't see evidence of an infection, but here take these...really???). After that was when I got the diagnosis. Read up about it and certain things never seemed to fit with how I was feeling. Refused the medication that is normally prescribed because of the harsh side effects. Took full strength Aloe which did wonders (found the recommendation on the IC website). Long story short, bc of many other symptoms, I finally hit on celiac and gluten-free. Bc of my trust issues with doctors, I decided to try gluten-free on my own. My bladder symptoms resolved along with a few others. After that, tried to get formal diagnosis, but had been gluten-free for too long. Tried the gluten challenge, but could only handle two weeks before I was so miserable that it wasn't worth it. Only time I have bladder issues now is if I get glutened or if I have too much sugar/carbs which sends my candida out of control (ate two gluten-free cupcakes last night...today I'm miserable). I do realize that IC is a real thing that many actually DO have. I'm just also saying that since there is no definitive test for it, sometimes they will give you that diagnosis when they can't figure out why you have pain with no infection.

ndw3363 Contributor
ndw3363
Posted

I'm sorry, but this information is not correct. There are definitive tests to diagnose interstitial cystitis. Open Original Shared Link I had a cystoscopy and a biopsy among other tests. These tests will show damage to the bladder wall if there is interstitial cystitis. If you did not have these tests then there is no way you could be officially diagnosed with IC. If you were diagnosed with IC with no medical tests then some dr was not practicing correctly. I'm not doubting your story but I don't want anyone to believe the interstitial cystitis is simply a diagnosis of exclusion because it isn't.

Thank you for that - I wasn't aware. My "diagnosis" came from the NP at my GYN office - she was a self-proclaimed IC "expert" and never preformed any of those tests. Just gave me the Rx and the website and sent me on my way...reading all of the information on the website was what convinced me that she was wrong. I have such sympathy for anyone that truly has the condition - I know how awful I felt at the time and how blessed I feel that I was able to get to the bottom of what was causing such horrible symptoms. Because of all of this, I'm a HUGE fan of second opinions and doing some independent research before taking any prescription medication that was given without testing (most especially antibiotics - I won't take another unless it will actually save my life). Thanks again for the information - one of the many reasons I come here all the time - bunch of smarties :)

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
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      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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