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  • Wendy Cohan, RN
    Wendy Cohan, RN

    Gluten Sensitivity and Bladder Disease

    Reviewed and edited by a celiac disease expert.

    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 individualsprivacy.The author has the originalweb-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.’ssuggestion to try to eliminate wheat-barley-rye (gluten).The Elmiron was getting close it it’s maxwithout constantly abusing the situation with gluten…about three months ago Istarted eliminating gluten-carrying grains, “wallah” absolutely the mostsignificant change started happening about 3 or 4 days from the last day ofgluten.  How much better am I now sincethen – 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 ofcritters have and maybe still play a part of this.  I have taken every kind of antibiotic, with alittle success now and then, but not enough to kill it.”
    • “It took about 3 months to seemild improvement, about a year to see moderate improvement, and about 2 yearsto feel much better.  I am not 100percent symptom free, but most of the time I am a very manageable level ofsymptoms, and when I flare (from diet or sex) it is very short lived.I am down to one Elmiron a day (from theoriginal dose of 3) and I also do a gluten and sugar free version of the ICdiet, which I also think has helped me a lot.”
    • “I have had IC for 30 yearspretty severely.  It was only this pastyears that I got tested …and found out I had a severe wheat-gluten allergy tothe point that I cannot ingest one bite of anything with wheat or gluten…theysaid 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 letyou know the levels.  I feel muchstronger and have many days when I am symptom free.  I finally feel different.”
    • “I have started cutting wheat andgluten 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 toyours.Thank you for posting it again!”
    • “I have had IC for over adecade.  I have been on a gluten freediet for over 6 years and that has been the only thing that has given me anyrelief from the IC.  I no longer take anymeds at all – haven’t even been to a doctor for the IC in several years.Glad to hear someone else is seeing thebenefits of the gluten-free diet for IC and getting the word out.  I would definitely suggest anyone with ICgive it a try.  It definitely gave me mylife back."
    • “Where have you been for the lasttwenty plus years?You may have saved mylife.I have described these symptomsfor years to doctors and never got an answer that sounded even close to whatwas happening.  Just “try these antibiotics”once in a while at the beginning (there was minimal change), but more and morethe antibiotics got more and more expensive with less and less effect if any atall, 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 anythingbut “prostatitis” over and over again. My head now also has a nearperfectly clear thinking ability, before it was always a bit cloudy even thoughI may not have been totally aware of it.The feel of carrying extra weight is now almost gone. The gluten issue may not be theonly issue I have – prostatitis is likely to be part of the pain problem, butthere is no question that the gluten issue has been a very, very large part andis now subsiding.”
    • “I was tested for glutenintolerance but it came out negative but while I awaited results I went gluten free and I felt so goodI never went back.  I have had a lot ofimprovement going gluten and sugar free as well.I can find rice pasta, lasagna etc.easily.  It’s amazing how you don’t haveto try hard to substitute (for) it.”
    • “I have gone from having to gowith urgency every 5 to 10 minutes and being in constant pain (especially atnight) 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 mydiet – a very different diet than before.  Whole foods, more veggies, only whole grains (no wheat), no sugar, and anoverall more alkaline diet….There is help.  There is hope.”
    • “I am just into the first severalchapters of the book (Solving the IC Puzzle, by Amrit Willis, R.N.), but wantedto stop and ask if there were any people who were celiac or gluten intolerant thatalso suffer from IC.  In my celiacsgroup, there are quite a few that have celiacs that (also) have IC.Autoimmune – allergy – poor lifestyle choices– toxic body – all related.  So, I amwondering if there are others in this IC group that are glutenintolerant/celiacs or who have suffered from, have, or have healed fromautoimmune diseases…”
    • “I have celiac disease also.  I was diagnosed via a blood test about 4months 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 feltlike I was having a stomach flu every 2 weeks.  So I saw this guy and he gave me the blood test results (which Iignored) until finally, I felt so bad I decided to whit the gluten/wheat.I had a friend who has celiac really severelyand she told me that I might as well cancel my hydrodistention to test for ICbecause eliminating wheat/gluten might clear everything up for me.  Unfortunately, I had thehydrodistention which made me much worse, IC-wise….Sorry for the long-windedanswer.I finally stopped taking theElmiron…So far so good.I really don’texpect to have a problem.  It was justhard 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, wewould stop for two beers.  Relievingmyself before getting back in the car, I would be dying for the bathroom beforewe reached our destination, 45 minutes later.  I though this was normal.Isuppose 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 withgluten sensitivity and am gluten-free.  Since I was already eating very little in the way of grains at mynutritionist’s urging, I don’t find the diet that difficult to follow.I try to be very careful.”
    • “I agree with these 2 types ofpastas.  I also find that when I eatwheat (which is an allergy I have) that my bladder gets irritated…”
    • “…So, W. your IC is totally goneright now – especially after cutting out gluten?  I have known for years and years that I wasgluten sensitive as whenever I wouldn’t eat gluten or wheat, if I just atevegetables and protein my stomach would be soooo quiet.Hindsight is 20/20 – just wish I would havegiven up gluten years ago and maybe this wouldn’t have happened.  I am checking into pelvic floortherapy and will have that done along with many other things – I am soterrified of this getting worse, absolutely scared to death.  Thanks for your words ofencouragement and comfort.”
    • (Personal Communication)“Suddenly some of the mysteriesof what's been called my "wheat intolerance"or "allergy" were resolved.  In particular, I no longer thinkI'm crazy for suspecting a link between my 2.5-year-long urinary tract infection and the onset of my moreobviously wheat-related symptoms. Thanks so much for getting theword out, and sharing your experience!”
    • (Personal Communication) “I about fell off my chair when Iread about your bladder stuff.  I've seen 3 specialists (including adigestive doc and a urologist!!), a regular PCP, and a naturopath, andnone of them were willing to consider a link between wheat issues and my poorbladder's troubles. It was like the world lifted offmy shoulders - I'm not crazy!  And my body is not the wreck I thought itwas at the ripe old age of 31!Seems funny to be exultant aboutprobably having celiac disease, but that's whatI've been since.”

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    I gave up gluten because my sweet son was diagnosed with Celiac disease. I have had a LIFE LONG struggle with my bladder and kidneys and recently have been in so much pain I felt like giving up on life!! A few weeks of the diet and I feel AMAZING!! I cannot wait to see how much better I feel in the future!! This word HAS to get out!! My son's diagnosis literally saved my life and I want to become part of the 'cause' to get this word out about gluten!! Please contact me if there is anything I can do!!!

    Hi There, I was just wondering what kind of bladder issues you had. I am also completely struggling and have been for years. Doctors have not been able to find out what is wrong and I am at my wits end. Would you recommend anyone try gluten free?

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    My now 4 year old has suffered irritable bladder frequent night and day wetting and pain (ic) since a few months after she was toilet trained. Very frustrating as she was fully toilet trained before her third bday and within 6 months was wetting constantly. She would get urges where she couldn't move until they passed or she would wet herself. People tried telling me she was lazy. But on abad day this could happen every 10 minutes in a half hour period. We are on holiday atm and I decided to go gluten carb free for a health kick and can't believe the sudden improvement in my 4 year old. A full bladder every time she goes. No urgency where she can't move and four sleeps without wetting. Could it be gluten intolerance? Needless to say I'm a very happy mummy atm. No wet pants or beds

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    I was just diagnosed celiac and gave up gluten 2 weeks ago. I had a meal last night with some hidden gluten and today I feel like another UTI is coming on, so I googled for the connection! Sure enough, this article and a plethora of others, talk about the connection. Finally I may have found the root cause of several ongoing health concerns. It also sounds like ingesting gluten may be behind the chronic sinus infections I've suffered with the past 5 years or so. Thanks for you what you do!

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    Thank you for writing this. I have had the same experience. Most doctors here don't recognize the effect that gluten can have on bladder and kidney function. Or any other organ other than the small intestines. I hope they wake up soon it would save so many from so much pain.

    It has taken me decades to figure put my health issues and doctors have been less than unhelpful, some almost belligerent. I remember one time suggesting to a doctor that there might be a connection between my IBS, chronic bladder infections and chronic indigestion and could he look into it for me? He actually laughed at me and then said there was no reason to look into it as nothing would come of it! I wish I had continued on with this thought but I let that doctor distract me. Thanks for your article and I will look into this myself. I think doctors are often intimidated by educated patients and writing in charts the word "non-compliant" is usually a label they should wear!

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  • About Me

    An RN for 14 years, I have been following a strict gluten-free diet for six years of improving health! Now I help others as a Celiac Disease/Gluten Intolerance Educator. I work one on one with people on meal planning, shopping, cooking and dining out gluten-free. I will also work with children who have behavioral issues related to gluten or other food sensitivities.  My other websites are: www.WellBladder.com and www.neighborhoodnurse.net.

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