Celiac.com 08/28/2008 - Gluten intolerance can affect all the mucous membranes of the body in sensitive individuals, including the bladder lining.  I was diagnosed in 1996 with an incurable, progressive, painful disease called interstitial cystitis.  The symptoms mimic those of a bad bladder infection, although most lab tests are negative for bacteria, and antibiotics generally do not help.  I knew as a nurse how the bladder functions, and that it needs to have an intact lining to tolerate holding all the toxic wastes of the body prior to elimination.  It made sense to me to try a dietary approach, and I had good luck immediately by excluding from my diet known bladder irritants like tomatoes, caffeine, chocolate, citrus, and alcohol, even though most doctors at the time gave diet little credit for a reduction in symptoms.   Nevertheless, the disease did progress over time, and I eventually needed to take pain medications, anti-spasmodics, and other medications to enable me to function.  Every urine test showed that I had significant amounts of blood in my urine.  No one ever tested me for food allergies, gluten intolerance, or considered any other possible cause.  No one suggested that my symptoms were part of a systemic dysfunction in my body.  I had a painful disease, and they would give me as much pain medicine as I wanted, but there was no cure.

I was no longer getting enough sleep to enable me to function well as a nurse.  I made the choice to stop working for a few years to concentrate on rebuilding my health.  I was in constant pain.  It was about this time that I began turning to alternative practitioners for help, and started experimenting with my diet, as well as having food allergy and sensitivity testing done.  I had some success eliminating the swelling in my pelvic area using castor oil packs, enough so that when I had increased swelling from eating a particular food, I could tell the difference.  Careful observation showed me what did and did not negatively affect my bladder.  Eliminating gluten resolved a long-standing rash on my legs, called dermatitis herpetiformis, and after about two years and a lot of alternative bodywork, my bladder began to significantly recover.  It was the first area to show symptoms, and the last to recover.

Now, twelve years after my interstitial cystitis diagnosis, my urologist readily agrees that gluten negatively affects the bladder in some portion of her patients, and that eliminating gluten leads to a reduction in symptoms. All of my urine tests are perfectly normal and I sleep at night.  Still, there are almost no published journal articles linking gluten intolerance and the bladder. I am trying to get the word out there, specifically, the idea that we do not have to live with constant pain, and that what we eat can affect our health.

My future goals include beginning an informal clinical trial in the form of a support group for patients willing to try a gluten-free diet as a treatment for chronic bladder symptoms.  If anyone is interested in the link between bladder symptoms and gluten sensitivity, I have pages of anecdotes gathered from many people who have experienced healing on a gluten-free diet.

The Connection Between Bladder Symptoms And Gluten Sensitivity - A Collection Of Personal Experiences*

*Names have been changed to initials to protect individuals privacy.The author has the original web-posts or other identifying information. A summary of web posts from icpuzzle@yahoogroups.com and intersitialcystitischronicpain@yahoogroups.com and personal communications revealing strong evidence of a connection between bladder symptoms and gluten sensitivity. This article is an adjunct/follow-up to the above article on gluten sensitivity and bladder disease.

• …”The main help came from W.’s suggestion to try to eliminate wheat-barley-rye (gluten).The Elmiron was getting close it it’s max without constantly abusing the situation with gluten…about three months ago I started eliminating gluten-carrying grains, “wallah” absolutely the most significant change started happening about 3 or 4 days from the last day of gluten.  How much better am I now since then – about 500% better (close to where I was when I first noticed the IC, even though I didn’t know what was happening – close to TWENTY YEARS AGO).  I am still of the opinion that some kind of critters have and maybe still play a part of this.  I have taken every kind of antibiotic, with a little success now and then, but not enough to kill it.”
• “It took about 3 months to see mild improvement, about a year to see moderate improvement, and about 2 years to feel much better.  I am not 100 percent symptom free, but most of the time I am a very manageable level of symptoms, and when I flare (from diet or sex) it is very short lived.I am down to one Elmiron a day (from the original dose of 3) and I also do a gluten and sugar free version of the IC diet, which I also think has helped me a lot.”
• “I have had IC for 30 years pretty severely.  It was only this past years that I got tested …and found out I had a severe wheat-gluten allergy to the point that I cannot ingest one bite of anything with wheat or gluten…they said my whole digestive tract was inflamed…Over the years I knew I was wheat, dairy, and sugar intolerant but these (latest) tests are more specific and let you know the levels.  I feel much stronger and have many days when I am symptom free.  I finally feel different.”
• “I have started cutting wheat and gluten out of my diet, its been about 2 weeks now.  I, like M., have IBS.  I am feeling better every day.I am following a diet very similar to yours.Thank you for posting it again!”
• “I have had IC for over a decade.  I have been on a gluten free diet for over 6 years and that has been the only thing that has given me any relief from the IC.  I no longer take any meds at all – haven’t even been to a doctor for the IC in several years.Glad to hear someone else is seeing the benefits of the GF diet for IC and getting the word out.  I would definitely suggest anyone with IC give it a try.  It definitely gave me my life back."
• “Where have you been for the last twenty plus years?You may have saved my life.I have described these symptoms for years to doctors and never got an answer that sounded even close to what was happening.  Just “try these antibiotics” once in a while at the beginning (there was minimal change), but more and more the antibiotics got more and more expensive with less and less effect if any at all, it even included the kill-all antibiotic – kills everything except me …Went to nerve doctor ($2,500 plus, pelvic x-rays (2 or 3 types).One of the urologists… never said anything but “prostatitis” over and over again. My head now also has a near perfectly clear thinking ability, before it was always a bit cloudy even though I may not have been totally aware of it.The feel of carrying extra weight is now almost gone. The gluten issue may not be the only issue I have – prostatitis is likely to be part of the pain problem, but there is no question that the gluten issue has been a very, very large part and is now subsiding.”
• “I was tested for gluten intolerance but it came out negative but while I awaited results I went gluten free and I felt so good I never went back.  I have had a lot of improvement going gluten and sugar free as well.I can find rice pasta, lasagna etc. easily.  It’s amazing how you don’t have to try hard to substitute (for) it.”
• “I have gone from having to go with urgency every 5 to 10 minutes and being in constant pain (especially at night) to having almost no symptoms.   I am not “cured”.  I am still working on healing.  I occasionally have a mild flare.  Gradually I am able to add foods back into my diet – a very different diet than before.  Whole foods, more veggies, only whole grains (no wheat), no sugar, and an overall more alkaline diet….There is help.  There is hope.”
• “I am just into the first several chapters of the book (Solving the IC Puzzle, by Amrit Willis, R.N.), but wanted to stop and ask if there were any people who were celiac or gluten intolerant that also suffer from IC.  In my celiacs group, there are quite a few that have celiacs that (also) have IC.Autoimmune – allergy – poor lifestyle choices – toxic body – all related.  So, I am wondering if there are others in this IC group that are gluten intolerant/celiacs or who have suffered from, have, or have healed from autoimmune diseases…”
• “I have celiac disease also.  I was diagnosed via a blood test about 4 months before the IC thing came to a head.  I disregarded the doctor’s warning to stay away from gluten/wheat.I went to a gastroenterologist because I felt like I was having a stomach flu every 2 weeks.  So I saw this guy and he gave me the blood test results (which I ignored) until finally, I felt so bad I decided to whit the gluten/wheat.I had a friend who has celiac really severely and she told me that I might as well cancel my hydrodistention to test for IC because eliminating wheat/gluten might clear everything up for me.  Unfortunately, I had the hydrodistention which made me much worse, IC-wise….Sorry for the long-winded answer.I finally stopped taking the Elmiron…So far so good.I really don’t expect to have a problem.  It was just hard letting go.  I don’t know which came first (the celiac or the IC).Looking back, every time I drank beer I always felt bloated right away.  Classic example, on our way to skiing, we would stop for two beers.  Relieving myself before getting back in the car, I would be dying for the bathroom before we reached our destination, 45 minutes later.  I though this was normal.I suppose it was the celiac and IC kicking in. Too bad it would take 10 years and 3 pregnancies later to diagnose it…”
• “I have been diagnosed with gluten sensitivity and am gluten-free.  Since I was already eating very little in the way of grains at my nutritionist’s urging, I don’t find the diet that difficult to follow.I try to be very careful.”
• “I agree with these 2 types of pastas.  I also find that when I eat wheat (which is an allergy I have) that my bladder gets irritated…”
• “…So, W. your IC is totally gone right now – especially after cutting out gluten?  I have known for years and years that I was gluten sensitive as whenever I wouldn’t eat gluten or wheat, if I just ate vegetables and protein my stomach would be soooo quiet.Hindsight is 20/20 – just wish I would have given up gluten years ago and maybe this wouldn’t have happened.  I am checking into pelvic floor therapy and will have that done along with many other things – I am so terrified of this getting worse, absolutely scared to death.  Thanks for your words of encouragement and comfort.”
• (Personal Communication)“Suddenly some of the mysteries of what's been called my "wheat intolerance" or "allergy" were resolved.  In particular, I no longer think I'm crazy for suspecting a link between my 2.5-year-long urinary tract infection and the onset of my more obviously wheat-related symptoms. Thanks so much for getting the word out, and sharing your experience!”
• (Personal Communication) “I about fell off my chair when I read about your bladder stuff.  I've seen 3 specialists (including a digestive doc and a urologist!!), a regular PCP, and a naturopath, and none of them were willing to consider a link between wheat issues and my poor bladder's troubles. It was like the world lifted off my shoulders - I'm not crazy!  And my body is not the wreck I thought it was at the ripe old age of 31!Seems funny to be exultant about probably having celiac disease, but that's what I've been since.”