<<Disclaimer: Verify this information before applying it to your situation.>> Dear Listmates, I asked the following question recently and got these responses. Thankyou to everyone who helped with information! I am so very grateful for all the support offered in addition to information. I am posting an addendum with attachment that someone sent as 'Part 2: cystitis" Lissy Question: > I recently acquired yet another bladder infection which the DR now > suspects may be interstitial cystitis. I'm wondering if any other people > on the group have a lot of bladder trouble as I can almost guarantee an > infection if I consume gluten as I did about a week ago by mistake. > Custitis is an infection of the bladder by microorganisms and can > generally be remedied by antibiotics. > > Interstitial cystitis is bladder discomfort which is not always related to > an infection, is to do with problems with the integrity of the bladder lining, > and I think is an autoimmune problem which I have read on our group is > something some celiacs will be prone to. If there are celiacs on our > group who have bladder infections/interstitial cystitis, I would much > appreciate hearing how you deal with the symptoms as this can be a very > painful problem at times! Replies: I was diagnosed with Interstitial Cystitis 16 years ago. I was diagnosed with Celiac and Fibromylgia 12 years ago. I am sure I was born with celiac since I had colitis at age 12 and IBS after that. I am sorry that I can't give you any magic answers. I did get relief from the IC with Acupressure many years ago. I am having a major flare lately and am going to have a nerve block done. If you are planning on trying something to help you you can email me and I will tell you how I did because I have tried it all. http://www.ic-network.com/ This is a support group for people with IC. Yes, IC is auto immune. I do NOT have biopsy or blood diagnosed celiac. My cousin has celiac, and I lost thirty pounds before I went gf and started to feel better. When I have a gluten accident I also get a urinary tract infection. I have been tested for interstitial cystitis - I don't have it. My theory is that the gluten accidents cause diarrhea or loose stools, this is much harder to clean properly. This is a known cause of UTIs. One dr. in England suggested to me that I take a bath after every bowel movement. Not always practical!! Sometimes I carry those baby wet wipe thingys. I have also been much more careful to only have sex when we are BOTH clean. (just washed). Especially careful about myself. This seems to cut the frequency of infection. I am a little bit paranoid about getting a UTI as I had to be hospitalised in Britain for a week in the fall of '97. Very scary. That UTI turned into this illness which they can't diagnose and which is still making me ill, though responding to a gf, soy free, corn free, dairy free diet. Anyway, I hope some of this info. is helpful to you. Take care, and feel better (remember resting does help your bdy fight an infection!), I do have too many urinary tract infections; but I attribute them to sex, and probably not drinking enough water. I am not familiar with Interstitial cystitis. I take antibiotics for the UTIs. *This part is a summary from a previous poster's similar question: Lissy, what I am sending you is, I believe, related to your question, and it's already summarized. What I don't mention there is that I did have several urinary tract infections when I was drinking milk and eating gluten. I got several responses from both men and women saying they had the same or similar problems. Surprisingly, many also said they had the same problem with gluten accidents. Perhaps someone needs to look into this. In the following posts, each paragraph is from a different person, and they are typical of those I received. -vance My son and I are both undiagnosed celiacs (pseudo-celiacs?). We are also dairy and soy intolerant. He is 8 and when he ingests gluten accidently (or dairy), he goes to the bathroom constantly. He also will wet the bed sometimes up to 3 times each night when he gets gluten, although he never has accidents the rest of the time. When he gets gluten, in addition to the other more usual celiac symptoms, even when he goes to the bathroom before bedtime, restricts drinking in the evening, and gets up to go in the night, he will still have an accident, usually several nights in a row until the dairy or gluten gets out of his system. This only occurs when he has had an accidental gluten ingestion, and not at other times. I also find that I need to go to the bathroom frequently when I accidently ingest gluten or dairy. My brother has the same problem. He was horribly teased all through grade school because he just couldn't hold it that long and teachers were not sympathetic to his frequent requests to be excused. When he was 13, our grandmother suggested he might be allergic to milk, and voila! No more incontinence. My 6-year old son seems to have the same problem. As long as he's 100% dairy free, he's fine. But feed the kid so much as a Dorito and he's going to need a couple of changes of clothes before the day is out, and better send some for the next day, too. I have a problem called an Irritable Bowel Syndrome (IBS). It is caused when the smooth muscles in the bowel contract in front of and behind a waste matter. This causes intense pain. These same kind of contractions can occur in the urethra (tube that caries urine from the bladder) causing incomplete emptying of the bladder. This can be triggered by allergies or stress. I also have this problem as a result of stress. I think it is great that you can control it without taking medication. I am the one with gluten enteropathy, and my husband doesn't have the CD [celiac disease]. However, he has ALWAYS maintained that after big bowls of ice cream, which is about the only milk product he consumes, that he would live in the bathroom, the reason that he would make frequent trips to the bathroom all night long. Well, the doctors thought he was crazy, and quite frankly, even I did, too. Now after your post, I realize that my husband was right on target. I can't wait for him to get home to show him your post. It will be the first validation he has had. He has been through the prostate surgery and is really having problems, but his drs won't even consider the possibility of CD or lactose problems. Since he has been in the retirement center, he has increased his consumption of cottage cheese by ten-fold or more. The drs say his diabetes explains everything. They refuse to look further. Thanks for bringing up this association between milk and urinary frequency. I have always loved milk too, and even with lactose intolerance find it hard to give up dairy products, but I've noticed I go to the bathroom a lot more some days than others, when my overall fluid intake is always about the same. I'll start watching to see if my MILK intake (I use Lactaid 100 in my coffee, eat yogurt, etc.) is the culprit. I'll let you know if I notice any relationship. interesting observations, Vance. I have been cheating with cream in my coffee for the past 2 months and think I have noticed myself making more trips to the Ladies Room while at work, and getting up more at night. Now I have more incentive to go totally dairy free. Thanks again for your comments. Funny you should comment about frequent trips to the bathroom. When I was quite ill before being diagnosed with CD about 11 years ago I found the same frustrating problem. After going gluten and dairy free it has largely disappeared - except every now and again. There seems to be some trigger that sets me going, as if I had taken a diuretic. I have wondered whether it is related to an allergic reaction or something, but haven't managed to pinpoint anything. Bit of a nuisance, however the last checkup of the prostate and, etc. was all OK. I am not sure if I have such problems or not. but when I was a child, I had big problems with diarrhea and vomiting and also the urinary thing. I wet my pants more often then not up to the age of about 8 when I got quicker to get to the bathroom. I always thought that something there was not quite my fault. I had simply no control over it. But I see I definite connection between gluten accidents and having to spurt to the bathroom to pee, not just diarrhea. I Wonder how those things are connected. I am glad, you asked the question. Maybe we can find a pattern there that is not considered at this time. Thanks for your post - you have struck a chord here! I had the frequency like you, with a slight variation. My biopsy first showed up negative for CD but proved lactose and sucrose intolerance. This was when I was about 35. I had been urinating about every hour for the previous 20 years but for a lot of the time it was accompanied by extreme pain like a cutting knife. I drastically reduced my milk intake to about one or two coffees a week and drank soy most of the time. A few years later I changed to another gastroenterologist as I suspected there was something more to be discovered. I still had the bladder pain and frequency (together with several CD symptoms which were assumed by the first doctor to be due to the lactose/sucrose problem . The new doctor immediately suspected CD as apparently when the biopsy shows up deficiencies for both enzymes, it is usually a marker pointing to CD. The first doctor only took one. The second took seven, and this biopsy proved positive for four samples and negative for three. He said this result proved his conviction that one sample is useless. He also predicted that within one week of eating GF, my bladder pain would reduce by 50%. He was right. The frequency did remain but I admit to still having a cappucino or two each week as the lactose count had come back to normal. The pain and frequency has taken about three years to reduce to practically normal. Every so often though, I may have a day of frequency. The other thing I have noticed that may have helped the pain problem was to drink more water. However, I am intrigued by your speculation about milk. I hadn't made the connection to suspect milk as a cause of the bladder problems, rather than recovering from 41 years as an undiagnosed celiac. Maybe it's the milk protein as well. It will be interesting to read the summary later on. Thank you for this, I am now speculating about whether it would be better to be as vigilant with milk as I am with gluten. As an extra point to maybe speculate about and add to your theory - I visited a urologist several years ago about the pain. When I described it and after he examined me he pronounced that it was interstitial cystitis (sometimes also referred to as "mast cell cystitis". From what I remember this is due to the tissue surrounding the bladder and urethra being "leaky" so that if you have ingested something that you are allergic to, the fluid from this allergen leaks through this tissue and creates inflammation. Mast cells congregate around this area in an immune response. The pain can sometimes last for 20-30 minutes. (Then you have to urgently go to the toilet yet again and it starts all over again.) The pain is like sitting on a red hot barbed wire fence and being zapped by electricity. My worst ever experience was from having a pizza, which was why I believed my gastroenterologist when he predicted that the symptoms would reduce. When I first started to see the term "leaky gut" used to describe CD I immediately wondered if there is a connection with interstitial cystitis. The urinary system is so close to the small intestine that it seems feasible that both areas could exhibit a similar characteristic i.e. being "leaky". Hope this is helpful. Yes, I've noticed a similar problem - not really frequency, but urgency. I thought it was tied to accidental ingestion of gluten, but then, that's what gives me the lactose problems. So it may be the lactose. Interesting observation. *end of summary from other poster. I suffered with chronic bladder infections for over 25 years; it was constant and horrible. I would get severe infections on an on-going basis. When I was young (and stupid), I would try and ignore them. I ended up in the hospital the last time I tried that. I had coloidal silver treatments (do you know what that is?) and they would work for a while. I had the cauterization many times which only worked for a while also. Then a urologist finally told me I had this interstitial cystitis (which he said was "an infection outside the bladder") and gave me some sort of treatment for it (sorry, it was about l0 years ago and I don't recall which antibiotic it was). I remember that I was supposed to sit in a hot tub several times a day while I was taking this medication. Whatever it was he gave me, it really did help alot, combined with the sitz baths. I remember the doctor's telling me that it was critical to the effectiveness of this medication to soak in the tub along with it. All of this was pre-CD diagnosis and looking back, I think there had to be a connection between the two things. I can't tell you why, but about 3-4 years ago I stopped having the cystitis, although I sometimes feel that an infection is coming on; so far, it hasn't turned into anything. I take Macrodantin for about 4 doses if I think something is "brewing." The problem for me in doing that is that it has both cornstarch and lactose in it and I am allergic to both of those things. I am also highly allergic to sulfa so it is really a good thing that the cystitis has stopped. It may be that the fact that I started taking HRT and actually absorbing it that helped the cystitis stop. That's the only thing I can think of which may have made a difference. The bladder infections stopped BEFORE my CD diagnosis so I can't relate it to being GF, but it does seem too coincidental about the estrogen-progesterone regimen occurring about the same time. Good luck with this terrible condition; I wish I could be of more help in telling you how to get it under control. Most of the related things I have had with the CD, I know how I detoxed it out of my body, but the cystitis remains a mystery to me...... I just got home from a visit with my urologist. I am scheduled for a cystoscopy, ultrasound and other bladder tests. Since January I have been on one antibiotic after another - even 10 days on an iv Rocephin which is supposed to kill everything. Last week I passed a kidney stone and will find out tomorrow what it contained. I did get some relief after I passed the stone, but I know without some kind of help the vicious anti-biotic/candida cycle will continue. I take Diflucan for the candida, but I think it is becoming resistant, so I'll have to switch. It is very possible that IC is an auto-immune disease. The urologist considers it a good possibility that he will find evidence of it. It is amazing how the celiac syndrome takes in so many of our body parts ---and frustrating. If you have any specific questions, I will be happy to answer them. I almost feel as if "been there, done that" with all kinds of uti problems. Keep drinking water - they say 48 ounces/day. I am very bad about this, but I am getting better because of the constant infections. I also am showing red blood cells in the urine. The urologist put me on Macrodantin, 1/day and I probably will be on it for 6months to a year to try to prevent future infections. He also said that depending on what he finds, there are new medications to help ease the problems. I really hope so. I use Dannon Vanilla Yogurt to clear up the infection. Eat about 1\2 cup every day. My doctor told me about this. Yey!! Finally found someone with similar problems to my own - you've answered a couple of question for me. I suffer from a lot of blood in my urine because of infections at time, but when I'm tested they all come back clear & ok so my Dr just thinks for some reason my bladder is irritated - I never considered the Celiac connection. I drink gallons of Citravescent drinks to neutralise the urine and then after a day or two of discomfort I seem to be ok - now that I jump straight onto it as soon as my cystitis starts. Hi! I had urethral problems my whole life until going gluten-free. Beer made it the worst. Hot soaks in the bath, eating celery, apples and parsley were great pain relievers, then there is an otc product called phenazopyridine (generic name) that turns your pee bright orange but gives pain relief. You just have to get it checked out with the doc to make sure there's no infection. Whenever it was an infection, bactrim DS worked for me. There was even a time where a urethrologist gave me them to have on hand so I could take 1 if I felt an infection coming on. Good luck! My wife suffered for a long time with cystitis. This eventually became linked with any major stress episode. The most effective way we have found to control this USED IN MODERATION is a teaspoon of sodium bicarbonate in water (soda water is best) drunk AS SOON AS POSSIBLE AFTER SYMPTOMS START. This will stop about 80% of sterile and infection cystitis without needing any other treeatment. A second dose could be taken later in the day but if symptoms continue you need to seek medical help and not continue, as it it unlikely to have much more effect. Sodium bicarbonate is very safe but like anything you should not take too much as it WILL have an effect other than the desired one, if you take too much. I'm not a medic. I've offered this advice as the husband of a sufferer to another sufferer and hope it'll help you as much as it did Karin. I have had bladder problems (frequent infections despite meticulous hygiene and urgency/frequency symptoms without infection). I have had these at least a decade before my CD diagnosis. I see a prominent urologist in Boulder, CO, and her specialty is interstitial cystitis. She did a cystoscopy on my (look inside the bladder to see whether the lining had the "telltale" stellate appearance of IC). My bladder lining is fine, but I still have trouble with frequent infections and urgency. I have learned over the years that my bladder issues are related to two things: the leaky gut syndrome that accompanies CD. Bacteria that should be restricted to my intestine make it "over the line" and cause infection. Also, I know I have a candida problem, and the yeast imbalance causes me to feel as if I have an infection, even when I don't. My urologist gave me a list of dietary things to avoid to reduce IC symptoms. These dietary things include avoiding: caffeine sugar dairy spicy foods, such as hot chilese/curries citrus juices chocolate You may want to try some of the things I do just to see if it relieves any of your symptoms: Take 3 grams of L-Arginine (an amino acid) daily. This has been shown to reduce interstitial cystitis symptoms in many IC patients). Try avoiding the foods above. Try some Lactobacillus acidophillus (GF, obviously) daily to restore good flora in your body and fight the possibility of yeast Try some yeast-fighting herbs, such as Pau D'Arco, Goldenseal, or Blackwalnut Hulls. You may find your bladder symptoms are related to yeast. Do your symptoms get worse after you've had sugar? If so, it may be yeast, which also is common in CD patients. Best of luck to you. I know this is a difficult problem, especially if it's IC. But I highly recommend my urologist in Boulder. She does accupuncture just for IC and also recommends yogo to exercise pelvic muscles. She's had much success with her methods. Sorry it took so long for me to reply, I have been very busy lately. I am a new list member and recently discovered that I am gluten sensitive. For about 5 years I have struggled with recurrent uti's (urinary tract infections) and at one point thought that I had interstitial cystitis. Basically, I have been able to control my bladder discomfort by doing the following: 1. avoid gluten 2. avoid all dairy products (milk, cheese, yogurt, etc.) - this is an important one because my doctor said that undigested proteins (milk protein is difficult to digest especially for celiacs) are primary food for micro-organisms that cause uti's and I have found that milk indeed causes bladder problems. 3. avoid soy products (same reasons as number 2) 4. avoid bladder irritants: chocolate, alcohol, tobacco, citrus, some spices, caffiene 5. drink lots of water I have found these things to really help. Most of the time my bladder doesn't bother me anymore except when I eat dairy or something. I also found that I don't have to be so strict anymore like I eat chocolate and drink alcohol occassionally with no problems. For the most part, I think it is key that you avoid undigestable proteins and allergenic foods. I have also found that an absorbable enzyme supplement called NESS 419 has actually saved me from getting bladder infections. This supplement is hard to find - I get it through my doctor. Incidentally, I haven't had a uti for a year now :-). I have had both problems for years but the infection part stopped when I was diagnosed with cystitis. I went for treatments for 4 years and then found out through the internet how to keep the cystitis under control. I gave up caffeine, pop (anything that has the fiz in it or citric acid), chocolate, citrus and tomatoes. I do very well and can sleep for 8 hours without getting up to the bathroom. Also the pain and the odor has disappeared. I do not nee treatments anymore and I went on Shaklee vitamins which I believe has helped alot. Vitamin E, evening of primrose oil and B vitamins are important. Look at your local health food store in the vitamin book under bladder or inflamation. I know this sounds like alot but it is worth it! Let me know how you make out. Also, I agree that gluten flares up cystitis and my arthritis as well. Symptoms of IC - can be frequency, pain, urgency. The only way I tell the difference between an infection and IC is with an infection I get burning when I urinate. No, there is no connection to gluten I was diagnosed with a biopsy by a Urologist.