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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.


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    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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    After too many years I have struggled with my mother's Colon Cancer and my daughter's Incontinence issues, Now I know that it is a hereditary issue. Thank you for sharing your stories and I hope that we can heal and help others.

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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!!!

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    I just want to write on behalf of my mother. She has been struggling for almost 6 years with constant bladder-pain infection, and she went for so many operations, and now she must use a catheter three times a day. she became much better and did cut out the obvious food, except the hidden gluten. They even put her on anti-depressants. Thank you for this article. she cried when she read it. All praise to God. Thank you. She is finally living again, like the mom I always knew.

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    I didn't even imagine that there is a link between gluten intolerance and IC. I can't get a doctor to tell me that my problem is gluten, but after cutting out the obvious culprits for the last week, it is glaringly obvious. Just the fact that I don't look pregnant anymore tells me what I need to know. Now that I see that the two conditions go hand in hand and can be corrected by eliminating gluten from my diet, I'm more convinced that this is the way to be! I agree with the other people that say that they are happy to know that it's not all in their imagination! Thank you.

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    I am 24, and I have had stomach trouble and constipation for the past 10 years. My mom was diagnosed with celiac a few years ago, and I suspected that I might have it as well but didn't want to have to go on the diet so ignored my issues. Over the past year, I have had chronic yeast infections, chronic urniary tract infections, joint pain, problems with anxiety, fatigue, headaches and recently started breaking out in hives and an itchy rash. I am now positive that I have celiac too, and I believe it has caused all of these issues. I am going to go on the gluten-free diet and hope that it resolves the issues I have been having.

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    Your article helped me to link a rash I have been getting on my hands and feet for the last 10-12 years of my life to a wheat allergy! I was told it was some weird type of eczema by the doctors and that a steroid cream would make it go away, but I refused the cream, seeming only to suffer badly with it in Summer. But from the pictures and the description I believe it to be dermatitis erpetiformis.

    I too have bladder problems! Which has been a more recent problem, lasting about the last 8 months. I have taken countless courses of unsuccessful antibiotics and tried many different supplements, also seen a specialist and had scans, xrays etc. I gave up sex for a month (as instructed by a urologist) which seemed to help a bit, but not fully. It was only when my sister who is a Coeliac suggested that I give up wheat that I found any success. She had read on group on facebook that some Coeliacs have long standing bladder problems (or IC) instead of any intestinal symptoms. I have been wheat free for just over 2 weeks and feel almost normal, urinating no longer has me crying or panicking for the first time in ages. Keep up the good work, because I believe this could solve an awful lot of problems for many people, who are suffering needlessly with endless pain.

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    I was diagnosed with IC about ten years ago after living with constant pain, dozens of doctors' appointments and ER visits, and countless rounds of antibiotics. Last year I was diagnosed with hypothyroidism and have been taking synthroid, in addition to Elmiron for IC. I knew about the link between thyroid issues and gluten intolerance, so when I started to have nausea, sinus headaches and fatigue, I did an elimination diet to see if quitting gluten would help. The result is amazing. I no longer have sinus problems or stomach problems or fatigue. It's only been two months, but already my IC symptoms have improved greatly. It's something I figured out on my own just by paying attention to my body. We need doctors to learn more about this and start talking about the benefits of a gluten-free diet! I feel like I lost gluten, but I got my life back, and that's a pretty good bargain.

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    Guest Wendy Cohan, RN

    Posted

    I was diagnosed with IC about ten years ago after living with constant pain, dozens of doctors' appointments and ER visits, and countless rounds of antibiotics. Last year I was diagnosed with hypothyroidism and have been taking synthroid, in addition to Elmiron for IC. I knew about the link between thyroid issues and gluten intolerance, so when I started to have nausea, sinus headaches and fatigue, I did an elimination diet to see if quitting gluten would help. The result is amazing. I no longer have sinus problems or stomach problems or fatigue. It's only been two months, but already my IC symptoms have improved greatly. It's something I figured out on my own just by paying attention to my body. We need doctors to learn more about this and start talking about the benefits of a gluten-free diet! I feel like I lost gluten, but I got my life back, and that's a pretty good bargain.

    Hi Elizabeth,

     

    Well, they are finally beginning to listen. I wrote "The Better Bladder Book - A Holistic Approach to Healing Interstitial Cystitis & Chronic Pelvic Pain" in 2010, and it has an entire chapter on the link between gluten (as well as other food sensitivities) and the bladder. There are also two new studies confirming that at this estimate, about 30-40% of IC patients are gluten-sensitive.

     

    Wendy Cohan, RN - article author

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    My daughter is 6 and has had UTI's since 3 with horrible emotional consequences and gastro problems. She has had two blood tests coming back negative and now has to wait 4 months to have a biopsy to test for celiac. I so just want to remove Gluten NOW, but have been told not to as it affects the results of the biopsy.

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    I have had appts. with my family doc, urologists, and recently a naturopathic physician. For the last year the inflammation in my bladder has been pretty extreme at times. I've been diagnosed and re-diagnosed by many - but with no test results to prove anything. And, the tests I've undergone have been MANY. Bringing my naturopathic physician into the picture has been a life saver. He asked me to stop eating wheat in all forms only a month ago. Within 3 days the severity of my bladder problem totally subsided. If you run into my post please try this. I can't believe the different and the insanity of the past year trying so hard to find out what was wrong. Thank you for creating this site.

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    Thank you so much for this! I saw a stop in my "UTIs" when going on a gluten free diet. I also saw great improvement in my severe IBS, fatigue, and other crazy symptoms (my adult-onset acne cleared completely)! Every time I had an accidental gluten-ing, I would get what felt like a UTI. But the cultures NEVER grew anything out (I was always treated with antibiotics, but after going through my records I realized that I never had anything grow on the cultures). Now that I'm pregnant with my first child, I have had two UTIs. The doctor says they are completely normal and puts me on antibiotics. However, I have nothing growing on the cultures still. This is my third "UTI" in 3 months and I asked him if it could be interstitial cystitis, not an UTI. The doctor is unsure but willing to let me ride out this one without antibiotics because I know that I consumed gluten by accident just four days ago, right before this started! I took this website to him to show him the information contained. Thanks

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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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