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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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    Hi, it is brilliant to find this information. I get urine/bladder infections really easily. I've long thought that a gluten intolerance could be to blame. Recently my gynecologist told me the infections could stem from a problem with the intestines. Along with being very bloated all the time and having sudden tired/irritated spells there are many other little symptoms. My sister has intolerances and my mother has been struggling for years to get some kind of diagnosis for herself, but being of a certain age doctors take her for a complaining menopausal woman. She has cut out gluten completely. I'm hesitant to go to see a specialist. My generalist is pretty useless, combing this with my mother's struggle I am very skeptical that something will come out of it. What should I expect and how should I approach this with a doctor? Thanks in advance for any feedback.

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    Hi, it is brilliant to find this information. I get urine/bladder infections really easily. I've long thought that a gluten intolerance could be to blame. Recently my gynecologist told me the infections could stem from a problem with the intestines. Along with being very bloated all the time and having sudden tired/irritated spells there are many other little symptoms. My sister has intolerances and my mother has been struggling for years to get some kind of diagnosis for herself, but being of a certain age doctors take her for a complaining menopausal woman. She has cut out gluten completely. I'm hesitant to go to see a specialist. My generalist is pretty useless, combing this with my mother's struggle I am very skeptical that something will come out of it. What should I expect and how should I approach this with a doctor? Thanks in advance for any feedback.

    You should always be the boss when it comes to your health--never take no for an answer and switch doctors if necessary. Also, just try the diet should you not be able to get properly tested.

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    Why has it taken me 25 years, and many, many doctors to find this article. I have suffered so long and in the last year it has been a nightmare of always being sick, never going anywhere because of IC. Finally a name for the frequent urination, sometimes 25 to 35 times a night. I really need some information as where to start and what books are best to change my diet.

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    Why has it taken me 25 years, and many, many doctors to find this article. I have suffered so long and in the last year it has been a nightmare of always being sick, never going anywhere because of IC. Finally a name for the frequent urination, sometimes 25 to 35 times a night. I really need some information as where to start and what books are best to change my diet.

    Hi D.N.,

     

    I am happy to help you with this. I can recommend two books: The Better Bladder Book - A Holistic Approach to Healing Interstitial Cystitis, my book which contains an appendix covering the basics of a gluten-free diet, and Gluten-Free Diet: A Comprehensive Resource Guide, by Shelly Case. Both will give you the information you need to know. Recent research shows that about 30-40% of people with IC are gluten-intolerant. About 12% have actual Celiac disease.

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    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

    Thank you for all you are doing for those of us who seek mainstream help and are handed antibiotics instead of an over-all picture of how the toxins, allergens, etc. are processed (or not) and the leakage it causes to our sensitive membranes of the gut and bladder. Thank you for writing your book and for being active in this work. IC and gluten intolerance can be such debilitating disorders to have...and yet with much help so close at hand when the information is shared. D-mannose is an amazing help. FemDophilus has helped a bunch. Living gluten free is key. So much help for those seeking a real choice in their health and wellness. Again, thank you.

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    I can't tell you how excited I am that this is all coming out! I suffered for 8 years with painful swollen bladder, aching joints, migraines,constipation,irritability,painful sex,sinus congestion that would turn to pneumonia yearly,pain that radiated from between my shoulder blades and depression. I had a urologist run tests,scopes in all my holes and hundreds of dollars in medicine monthly. One night when I could not sleep I was researching bladder pain.trying to find a cause and I found.a girls blog stating all the same symptoms I had. She had a friend who was a nutritionist who told her to go gluten free. She did and felt better, so I tried it. It used to feel like I was peeing razor blades in acid every time I went. That was better the first day I didn't eat gluten and has improved everyday since then. It has now been one and a half years and I still get better each day. I never cheat on the diet and if I accidental get some I know it for about three days.i feel like a new person. My husband says I am funnier and happy all time! I wish I knew where the blog was I read I owe that girl my life. I had no idea just how bad I felt until I went gluten free. I get out of bed every day thanking God for that blog and for the internet.i am excited to be alive!!!!

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    Thank you, your blog should be read by millions of women who even consider suicide for being deprived of sex, sleep and a job. The most desperate aspect of this link between gluten, sugar and dairy intolerance is the ignorance of almost 99% of doctors and the public in general, we're treated as "freaks" or "anorexia candidates". I lost a job, a marriage and almost killed myself. Your blog can save many lives.

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    I came across this post while researching bladder infections/trouble on the net and the link between gluten intolerance and the bladder. Although I don't think I have IC, I'm a man, do men get IC? the benefits from going on a gluten free diet are worth the withdrawal symptoms from going wheat/gluten free. My bladder problems have almost gone ( only two weeks on diet ) but energy levels are much better and clearer thinking, which is great. I think for a man its much harder to talk about these things and then when they do by going to a doctor, they can be and more than likely to be misinformed about their condition. This post is fantastic for women, but hopefully more men who have these problems find it and see the link with their bladder problems.

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    This certainly explains a lot! I have been having this problem for nearly all my life and have had numerous of test done with doctors/urologist with no answers. Always felt as if I was the only one that experienced these symptoms in life. I am a male 37 years of age and now I have answers that hopefully I have been looking for! Switching over to Gluten Free Diet and I will keep you posted on how things go! Keeping my fingers crossed that this is the answer to all the pain and suffering that I have experienced in life due to this disease. Thank you so much for the valuable knowledge. Certainly will keep you posted!

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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

    Since the age of 35, I have had recurring pain in my middle left stomach area along with severe heartburn and skins plaques on my lower legs and knees. I was diagnosed with IC in Nov 2009 at age 42. Urologist prescribed Atarax and sent me on my way. Since IC is such a miserable, life changing condition, I started journaling what I ate and my corresponding level of bladder pain. After consuming a whole wheat bagel in Feb 2010, I awoke from a dead sleep 6 hours later with blood in my urine. My IC is so severe that bleeding is a regular thing. I have since removed gluten from my diet and no more bladder pain. Completely cured until I cheat....birthday cake. I always pay the price for a "cheat" without fail. I have never been officially diagnosed as gluten sensitive, but my doctor was willing to listen to the correlation without thinking me too crazy. There is definitely a link between gluten sensitivity and IC. I have tested it on myself at least 20 times (very weak when cake is involved), and I always have a flare up without fail. Whole wheat products create a faster reaction that white flour products. Perhaps there is more gulten in the whole wheat?

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    I have had IBS bladder INFECTIONS for years. I was told I may have wheat and oat intolerance. I was not given any test, so I put myself on a gluten-free diet for five months. I felt 100% better: no bladder problems. Then I had a communion wafer at church and felt so ill the doctor sent me for tests. Still waiting for results. I had to eat gluten for two weeks and all symptoms came back. I just rang doctor for another lot of antibiotics for bladder. My problems are dermatitis on hands, headaches, aching legs, swollen stomach, nausea, lack of sleep, mood swings, tiredness and diarrhea.

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    I just wanted to say THANK YOU for this article and all the comments. I have suffered with bladder problems for 20 years and never knew of, or thought of, the gluten/wheat connection. THANK YOU THANK YOU THANK YOU for getting the word out!

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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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