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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Out There With Bladder Pain?
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17 posts in this topic

Before I started suspecting gluten sensitivity, I've been having reacurring bladder pains. It started about a year ago. I felt intense pressure in my bladder, the same feeling like you have to pee very badly but have to hold it. I'd pee, and it would still feel the same. Its uncomfortable to urinate as well. Ive already been checked for everything under the sun. I don't have a bladder infection nor an std. So... I noticed its much worse when I drank caffeine. I stopped drinking caffeine entirely. It has been much better. However... it comes back sometimes. Im not sure if its from things I eat or what. I went gluten free for a little while recently. I didnt have a single bladder episode. I slipped up today and ate some breaded chicken strips etc. My bladder is really bothering me now! Its worse than its been in a while. I didn't have any caffeine, just water.

So im just curious if anyone else has bladder issues. I wonder if its gluten related?

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When my youngest was diagnosed w/ celiac she was also experiencing bladder symptoms. For example, she drank a glass of orange juice... and by the time the glass was empty she said it felt like she had glass shards in her urethra! She did a lot of research on interstitial cystitis and ultimately found that she was intolerant to nearly EVERYTHING. Her diet, for more than a year, was limited to about FIVE foods. She's a lot better, but still severely restricted.

I hope your journey is a lot easier. She's now gluten free, citrus free, nightshade, oxylate free, dairy free, and a bunch of other frees... BUT she has been able to bring many foods back into her diet.

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I had intense bladder pain and urgency, pressure and aching in my abdomen. Went to the ER twice with it over the course of 6 months. Not a UTI. I was getting up many times during the night, only to produce ...nothing. I was tested, scoped, prodded, saw a urogynecologist, etc, etc. I had pelvic floor pain, abdominal pressure, just misery for 3 years.

They thought maybe I had IC (interstitial cystitis) which is an inflammation of the bladder wall.

Gluten causes inflammation, so almost anything can be inflamed.

Once Dxed and gluten free?---it's all gone. :)

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I had this since childhood and I'm 48.

Interstitial cystitis is what they called it. They kept me on anti-biotics for bladder infections even though there was no bacteria in the urine specimens. :blink: I guess they didn't know what else to do for me.

It was so painful that the description of shards of glass is the only way to describe it. I had to pee all the time and I couldn't go when I got there.

All this to say that in one year and 5 months gluten free I have not had a single episode of this bladder pain unless I have gotten accidental gluten. It was one of the strangest things that it cleared up. I didn't expect it to ever be resolved since I've had it my whole life. There is another thread on here in the archives about bladder problems and interstitial cystisis being resolved after going gluten free.

I wonder how many bed-wetting children have gluten as the real source of their problem and it is the gluten effecting their bladder. I bet it's a bunch.

I hope you feel better soon and rest assured there are a lot of us who found out gluten was the real cause of our bladder problems.

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Thanks for the input everyone. Its amazing to see that other people are having the same issues. You would never think that it would affect your bladder!

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I wonder how many bed-wetting children have gluten as the real source of their problem and it is the gluten effecting their bladder. I bet it's a bunch.

In fact, bed-wetting IS listed as a symptom of gluten intolerance.

I would awaken almost every night as a kid, calling to my Dad to walk me to the bathroom (my poor Dad--they should have just invested in a night light !)

When I was in real trouble before my DX, I got up several times a night, banging off the walls on my way to the bathroom and back to bed and acquiring many bruises along the way. Gluten head caused a stumbling gait as well. :rolleyes:

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Oh my!! This is a symptom of mine that I have been thinking I am crazy over. I get sharp pains up inside, only way to describe it-- along with pressure sometimes. My primary doc ruled out UTI and didn't really have an answer to my symptoms but after learning of my celiac diagnosis, I thought it could be related to inflammation so I am watching my body to see what changes I can expect.

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I was diagnosed with Celiac about two weeks ago and have been gluten-free since then (as far as I know, anyway!). I used to get a lot of bladder infections in high school and college, but after "cleaning up" my diet (more veg, more water - less soda and alcohol) and consistently urinating after intercourse I didn't have as many problems. Then out of nowhere last year I got a bad infection, that came on strong and fast - they used to come on slowly, and sometimes I could minimize them myself with lots of fluids and eating right. After I was treated with several courses of antibiotics, the pain was gone (in fact, the pain disappeared almost immediately), but the feeling of having to pee stayed.

I was referred to a GYN, then a Uro-GYN, who treated me first for overactive bladder, then for interstitial cystitis, then wanted to put me on a TENS unit - all without any diagnosis, just "here, try this for a few months." In the process of going through all of that, I became excessively fatigued. When that doc wrote me off with a "well, I don't think we'll find anything, but here, go get a fatigue panel done" I went to see my GP again, who tested me for vitamin deficiencies and found A LOT (iron, B, C, D, calcium, etc.), which led her to do the blood test for Celiac and refer me to a GI doc.

Along the way, NO ONE has mentioned that Celiac might cause bladder trouble. I have switched to a different Uro-GYN, for whom I am now supposed to do a voiding diary. She had me go back on a "normal" diet (as opposed to the IC diet) and I've done fine reintroducing tea, acidic foods (like tomatoes), etc., so that does not seem to be the problem. Sugar seems to make it worse, and no one has tested my blood sugar (I'm a very normal weight, so I guess no one wants to test for diabetes). Caffeine doesn't make it any worse than I remember caffeine making me need to pee "normally."

So - if you had bladder trouble before going gluten-free, how long did it take for everything to calm down? I've only been gluten-free for about two weeks. I've had a couple of meals out, but the opportunity for CC would have been low at all but one meal. But I still feel like I need to pee, nearly all the time.

Would love to hear anyone else's experience!

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I have IC as well. For me, I had to cut out gluten and dairy to get relief- but everyone is different. It has been almost a year and a half since dx, and I am generally pain and spasm free, unless I cheat with dairy. Then I pay for it for several days.

The bladder relief was very gradual, so I honestly can't say how long it took to get better, sorry!

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This is what I'm waiting on, was urinating twenty times a day with constant sensation to go in January, getting up eight or nine times during night, followed the ic diet but then cut gluten as dad is celiac, been making progress ever since, now urinating five times a day just need the pain in urethra to go. Couple off times accidentally been glutened and seems to flare up immediately. Used to have undiagnosed extreme thirst and water just passed straight through me, this has called right down since going off the gluten.

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This diet list, or a similar one helped my bladder issues.  Unfortuneatly, I did not know to also cut gluten.  I still have issues with my bladder on occasion around my period.  This is a list I found on the internet.  Sorry I lost the link. I saw another site that mentioned gluten, but lost it when I needed to leave google.

 

1: Cranberry Juices & Extracts

#2: Coffee & Tea Products
#3: Carbonated Beverages & Sodas of Any Type (diet & regular)
#4: Tomatoes, Tofu and some Beans
#5: Herbal Teas
#6: Tobacco
#7: Alcohol & Vinegars
#8: Chocolate
#9: Strawberries & other acidic fruits  I noticed lemons, limes and pineapple were a problem.

#8: Chocolate
 

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This bed wetting thing is interesting. My 30 year old brother still has problems with bed wetting, usually only after a night of drinking beer ( full of gluten).  hmmmmm.

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This bed wetting thing is interesting. My 30 year old brother still has problems with bed wetting, usually only after a night of drinking beer ( full of gluten).  hmmmmm.

 

Beth, I think your imagination is starting to get away from you.  If you go to sleep drunk, passed out, then you are kinda likely to lose control of your bladder.  

 

Not everything is gluten related.  Try to relax with the guessing about a symptom here or there.  You WILL drive yourself crazy.

 

Colleen

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I don't share everything on this web site.  My brother has had problems wetting the bed his whole life, before the drinking started.  My mom wanted him to go see specialists when he was 12 ( not a beer drinker then).  Now it only seems to be a  big problem when he drinks.  He has been wetting the bed for 30 years. I should have been more specific.

 

Sorry if I see gluten everywhere, this is new to me. I have only had two months to deal with this. It's also not a far stretch since me, my daughter, and now my mom have problems with gluten. 

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I didn't mean any of that to sound bitchy, having a bad day.

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You're fine Beth.  We all have days like that and we all started out thinking gluten was everywhere.  Rest on the bad days and and use your good days productively.  It takes lots of time for the mind and body to heal.

 

Colleen

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Not saying that it is the only cause, but Interstial Cystitis is often related to group b strep, for which about a third of the population are carriers. Drinking lots of water is often all that needs to be done in order to keep the bacteria from getting a hold and growing in abundance to the point where it caused symptoms. Group B strep is not something that can be treated to the point of getting rid of it so antibiotics won't help long term. Changes to your diet (such as paying attention to acidity, arginine/lysine, and sugar could affect the balances of your overall system that may make your body a less friendly environment for bacteria to grow.

And sorry, but doing research on your own in this area is mainly going to result in lots of scientific studies but very little information written up in language that is easy to understand. But if you struggle through it, you may be able to find the answers you need to avoid symptoms long term. Basically, a diet low in acidity, low in arginine and high in lysine, and low in sugar could be the trifecta needed to get rid of IC symptoms caused by group b strep. And you may discover that there are really only a couple foods in your diet that are triggers that you need to reduce in quantity and frequency so a food diary could help. I do hope that you've caught it soon enough that dietary changes are all you need to make a difference.

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