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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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    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.

    Forget their advice. Eliminate the gluten.

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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!

    I have celiac disease, chronic bladder infections, anxiety for years, and now IBS. My doctor sent me to a celiac specialist; he knew nothing! So I wrote him off. Recently, tired of no action or help from my doctor, and not wanting any more antibiotics, I went to a different doctor who recommended "buscopan" for my severe bloating and pain in my entire abdomen (including spleen which deals with autoimmune overload) buscopan (non addictive) is a parasympathetic nervous system 'antispasmotic." It totally calmed all my 'spasms': bladder, bowels, spleen...I woke up with a flat stomach! I think it raises my blood pressure a bit though, but it calmed everything down. I follow a strict diet to no avail, so I was happy to get relief with the CNS antispasmotic. Long term effects of Buscopan? I guess I'll be figuring that out as I go. Good luck, all!

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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.

    I'm having the same problem. I'm 21 years old and have had 5 UTI infections in the past 6-7 months. Now I'm always super constipated that I've left work so many times in pain. No doctor does anything but keeps feeding me antibiotics which has caused yeast overgrowth in my gut. Anyways, I think that wheat is definitely the problem. I tried to eliminate it and then ate it. That day, I got fully constipated and now have another UTI! I didn't have one for 2 months and now it pops up . Crazy how we're so young, yet so much sickness can happen from gluten.

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    I had lots of stomach and bowel pains and very frequent bladder urges and pain. I was recently put on IBS medicine after my endoscopy and colonoscopy showed everything looked fine. I also was frequently tired, achy, irritable and anxious. Instead of starting new meds, I decided to go gluten-free. Hooray!!! Within one day I started feeling better!! I've been on it for 5 days now and feel better and better each day! I also can almost sleep through the night without urinating. I think going gluten-free has cured my whole system! I also eat mostly vegan and exercise daily!! Good luck to everyone!! Just try it... what have you got to lose?! Also, many gluten laden products are full of sugar, fats and sodium; so it will help you choose only healthier choices! I'm a believer!!!

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    I am 47 years old and have had a "leaky bladder" most all of my life. It became more pronounced after the birth of my children. I began to believe that my only hope was surgery. After going gluten-free I am completely better (after a LIFETIME of this issue). I can now JOG with no leakage!!! This without any special medications, surgery or exercises. All along, the subtle yet very damaging issue has been inflammation caused by gluten. I have been a vegan...a vegetarian...avoided processed--all of that. The one thing that worked and works for good is gluten free living.

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    I have had urgency and UTI symptoms but no incontinence or infection for two years. My urologist said I had an overactive bladder and after an elimination diet, we thought tea was the culprit. I have been off my beloved tea for 1.5 years with a little improvement but still symptomatic. My urologist offered me medication for overactive bladder but refused to diagnose IC because I had no blood in my urine. Then I attended the Gluten Summit free online in November, 2013 (theglutensummit dot com) and one of the speakers suggested a bladder/gluten connection. I immediately removed all gluten from my diet and was miraculously symptom-free. It has been six weeks now of NO urgency, NO UTI symptoms!!! I made gluten-free bread, coffee cake, and cookies over the holidays and remained asymptomatic. I don't mind living this way at all and think it's probably healthier for my family of 7 to be gluten-free based on all I have learned about today's wheat. (P.S. I am even drinking TEA again with no symptoms!)

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    I provided the link above so you could see the speakers and their topics and perhaps use them as resources for ideas to find out more about gluten. When I attended the conference live, it was free but there is a $97 fee to purchase the lectures now. Just wanted to clarify this.

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    Guest Mary Mundahl-New

    Posted

    After years of chronic bladder infections, colds, flu, pneumonia, bronchitis, gastrointestinal challenges our son was diagnosed with a severe gluten intolerance. Later he was identified with Asperger's syndrome. The whole family had a litany of various health concerns and one-by-one we all started a gluten free diet. Why are so many people suffering? Why are we seeing such an increase in ADD, ADHD, Alzheimers, various auto immune diseases, IC, "irritable bowel syndrome", gastro enteritis, and more? Do some research on the connection between mercury (the second most toxic substance on the planet) and its affect on certain people. Some people are more sensitive. We were told that Asperger's is a genetic thing. Yes, you are more susceptible to its affects. No, you do not have bad genes. Where do we get exposure? Dental amalgams and fish are major contributors. Do your own research and you will find a great deal on the internet. Start with "Autism Made in America" a You Tube video. Goggle the following: affects of mercury, dental amalgams, causes of celiac disease, etc.

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    After years of chronic bladder infections, colds, flu, pneumonia, bronchitis, gastrointestinal challenges our son was diagnosed with a severe gluten intolerance. Later he was identified with Asperger's syndrome. The whole family had a litany of various health concerns and one-by-one we all started a gluten free diet. Why are so many people suffering? Why are we seeing such an increase in ADD, ADHD, Alzheimers, various auto immune diseases, IC, "irritable bowel syndrome", gastro enteritis, and more? Do some research on the connection between mercury (the second most toxic substance on the planet) and its affect on certain people. Some people are more sensitive. We were told that Asperger's is a genetic thing. Yes, you are more susceptible to its affects. No, you do not have bad genes. Where do we get exposure? Dental amalgams and fish are major contributors. Do your own research and you will find a great deal on the internet. Start with "Autism Made in America" a You Tube video. Goggle the following: affects of mercury, dental amalgams, causes of celiac disease, etc.

    Actually I was also worried about the potential risk of mercury toxicity from amalgams and found a scholarly article well researched with data on the subject (eventually).

    The exposure to mercury vapor from 14 amalgam surfaces (USA average) is approx. the same as 2 tins of tuna a week.

    This isn't killing anyone, gluten on the other hand is increasingly causing large scale health problems in the west.

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    Hi.

    I came across this article because I have had symptoms of urine infection on and off for the past 2 years, but test for UTI came back negative. I was diagnosed with coeliac disease last week. I really hope that going gluten-free will help with these symptoms, because it's really uncomfortable and I don't know what the cause is. I get a lot of stinging and discomfort really low down in my abdomen, and stinging ''down there'' a lot, not just when I'm on the toilet but that stinging can be there for most of the day sometimes. I am going gluten free in 3 days! If I notice any improvement in my UTI symptoms I will try and remember to post back here. Thanks for your article.

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    I absolutely agree with this article, I had constant lumps and huge spots all over my face up until the age of 28 and constant urine infections, the doctors just said I got urine infections due to stress but I wasn't stressed, they said my skin problem was adult acne and gave me cream and tablets, after being at my wits end and doing some online research I decided to eliminate gluten from my diet which was hard as I ate a lot of bread before, after about 2 months my skin cleared up and I never got another urine infection, it is just amazing, I wish I had known this years ago. I tested my theory by eating gluten for 2 weeks afterwards and I got a urine infection and my skin broke out so it definitely is the gluten causing this. I have not been diagnosed by a GP.

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    For starters, I am an active, 24 year old female. For most of my life, I have suffered from symptoms of hypoglycemia. Since my grandmother was diagnosed with type 2 diabetes over 25 years ago, I thought that I was destined to develop the disease as well. At the age of 11, I had my first UTI. Flash forward 10 years and I began to develop even more recurrent UTI's spaced out at about 6 months apart. Symptoms were painful, but went away after about a week. Antibiotics did not help, but Azo pills did tremendously. This past September is when everything got worse. Shortly after starting school for my doctorate in physical therapy, I began to notice severe bladder and urethral pain. After countless trips to general practitioners and two urologists, I was yet to find a cure for my pain. I had multiple urine cultures done, all which came back negative. I even underwent a cystoscopy at a very prestigious hospital. After my cystoscopy, my doctor prescribed me with Elmiron, oxybutinin, as well as a combined mild analgesic antibiotic/anti-spasmotic medication, None of these seemed to help. I must note that I was hesitant to start the Elmiron, considering its side effects and consistent necessity. I was hopeless at this point. My sympathetic boyfriend was still trying to lift my mood and keep my hopes up, but I essentially had given up. My life consisted of sitting on the toilet for hours on end, even during the night. Simple daily functioning became almost impossible. I couldn't find joy in anything, and it began to effect my mood. I became depressed because I could not see the light at the end of the tunnel. As far as I was concerned, nobody could help me. After a lot of praying and admitting defeat, I spoke with one of my classmates who had gone through a similar ordeal. She recommended I take a vaginal health probiotic and 100% pure cranberry juice before bedtime. I decided to give it a try, since there was nothing else the doctors seemed to know what to do. This method helped for about 4 days, but a stressful life situation caused my symptoms to flare again. At this time, I decided to continue my research and heard of a connection between bladder issues and gluten sensitivity. Long story short, I decided to go gluten free. No longer than a week after I made my decision that my symptoms seemed to disappear. I couldn't believe it. I always knew that my body was trying to notify me of a problem, I just wasn't listening! I must also note that I have had severe abdominal cramping and bloating in the past, and celiac disease runs in my family. Stomach pains would cause me to double over in stinging pain. I firmly believe that our dietary choices greatly influence our overall health, in more ways than one. If you are having issues and just can't seem to find a solution, I encourage you to speak with a nutritionist/naturopath that can help distinguish/eliminate possible harmful food allergens. It can change your life if you can get your symptoms under control. Don't get me wrong, western medicine can be a life-saver and in many instances, it is. But sometimes our problems are only a small part in the bigger picture. For all of those who are currently suffering, my heart goes out to you. I understand that some may be worse than others, but bladder pain is nothing to joke about. You don't really understand how much it can effect your life until you deal with it yourself. Hang in there. Your body is a beautiful machine. Sometimes it just takes a little listening and understanding to get it back to its natural, comfortable functioning.

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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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