I have had interstitial cystitis for 27 years. I just found out about 6 weeks ago that I have celiac disease. It would seem logical that they would be related. I would love to hear more on this topic. Thanks.

Hi Wendy...my wife Lisa suffered for years with severe incapacitating IC...in 2003 she was diagnosed with celiac...since beginning a gluten free diet, her IC has pretty much disappeared. I looked through the literature and found little over the years, but as a clinician, this anecdotal experience has been impressive...why not the bladder mucosa? Celiac seems to stimulate autoimmune attacks just about everywhere else!

I wish my IC had gone away when I stopped gluten. It didn't work for me!

There are cross-reactions between gluten and other foods like coffee and non-gluten grains.

Laura, Simply going off gluten does not always solve the autoimmune tendency. You may have multiple food sensitivities that haven't been tested. There are several foods that are cross reactive with gluten, i.e. the immune system sees these foods as so similar to gluten that it reacts to them the same way. Therefore if you don't get off these foods at the same time you will not resolve your symptoms. Milk products are one of the most common cross reactive foods.

I have suffered with Interstitial Cystitis for about eight years with many different treatments and little relief. I accidentally stumbled onto a gluten and dairy free diet and after the first two days my knees stopped aching and burning. I sleep better and have more energy. I think it will take more time before it significantly helps the Interstitial Cystitis, but I feel confident it will. I just got my blood results back today. I was tested after being on a gluten free diet for a week and the celiac test was negative, but I have the gene. My doctor says she considers me to have the disease because of my symptoms.

I have suffered with IC for many years. I was diagnosed with Celiac three years ago. When I told my urologist I had celiac, he immediately said the celiac could very well be causing the IC. The gluten free diet has definitely helped my IC.

hey stacy-
I was diagnosed 2 years ago and feel like I am falling apart as well. You are not alone. I do feel that diet and IC have a strong connection. hang in there.

I too just stumbled onto you site. I was diagnosed with IC about 3.5 years ago and even with all the medications it is getting progressively worse. I met another doctor and she said I should have my stool sampled for gluten allergies. Bingo, I have gluten allergies. Makes sense my maternal aunt has celiac, my mom lupus and my sister has the skin irritation (I just told her to get tested for gluten as she is taking risky expensive shots). I have been gluten free for about 10 days now and have not noticed any substantial changes but I expect this will take some time. Did not know your intestines are about 70 percent of the body's immune system.

After doing research on the GAG layer I am taking a lot of glucosamine/chronditan, elmirin, an antihistamine and of course gluten free. will see what happens.

Hi Pam, I'd love to hear how you're doing now, I am also on elmiron, and about to start chronditan instillation's--maybe I should go gluten-free...

I have had Interstitial Cystitis for two years now (possibly 20 in a milder version). I have had a bladder distention. I have been taking Elmiron and Hydroxyzine for a year now. I recently finished 6 months of bladder instillations. After a colonoscopy the doctors suspect Crohn's or colitis but can't make up their minds. I have been to a naturopath and started a no sugar/gluten/dairy/caffeine diet. It has been a brutal two weeks. I just can't handle the symptoms any more. It is so hard to tell if is my bladder or my bowels that are in pain. Maybe the gluten is the problem. I guess I will wait and see.

I am a male IC patient having had minor symptoms for several years and chronic symptoms the past six years. I got the usual antibiotics for over a year from one urologists even without any infections. When that does not work, the urologists jumped to the conclusion that it is the prostate (at least you girls don't have to have that confusing the issue) even though my prostate was normal. I then changed urologists and demanded a test for IC since my older sister has had the disease for many years. Finally a biopsy was performed confirming the IC. I went with Elmiron for a couple of years and decided it was causing more problems than helping. I ordered the diet book from the IC network and after stopping all of the pain makers I was still not seeing any positive result.

By this time, I am having quarterly hydrodistensions, Huner's ulcers on top of the cystitis, and once again changed urologist. This went on for another year and that urologist said my only alternative was to have my bladder removed.


I went searching for another doctor and any other sources of foods that would cause irritation. I found a great doctor and a website in Australia saying that avoiding all dairy products would eliminate 75% of all pain and problems associated with IC.


I am now one year free of any dairy products (yes that means Ice Cream, butter, creams, whips, pies, cakes, and anything that might contain milk or cream). I now use Rice Dream as a milk substitute. The pain from IC has grown less with each month on the restricted diet--a side benefit is that there is no weight gain as long as I watch the carb intake.

I'm now going five months between stretches and shooting for six. This last one two days ago was very positive. No catheter to take home and the doctor doesn't expect me back for six months! I did have a very small ulcer, but nothing compared to what I was always having. I have a lot of family and friends praying for me and I am very thankful for finding that website from Australia.

I am looking for info on how gluten allergies can affect a young child. Out of the blue about 18 months ago, my then fully toilet-trained 3-year-old started wetting the bed and having frequent accidents, including constant dripping and pain before she urinates. We have had several urinalises done, all negative. We have been to the urologist who is blaming the problem on constipation. No one has an answer but this does run on my father's saide of the family. Any advice on how to get a doctor to take me seriously? They keep saying she will outgrow it, but it keeps getting worse...(she potties every 15-20 minutes during the day and every 2-3 hours at night with frequent accidents in between...remember, this came out of the blue...she was fully trained!!) Thanks in advance!!

My daughter (4 years old) sounds very similar to your daughter. She was having very frequent wetting accidents (at least every hour) despite visiting the toilet regularly. The doctors have also said she is constipated however this has been treated and she now has a bowel movement most days. I have put her on a wheat free diet for the past week and she has been dry during the day for the past four days... early days yet but this is the longest stretch she has ever had. I haven't excluded all gluten just wheat which is much easier to cater for. She is also somewhat dairy free (her choice, as she doesn't like milk), she does eat yogurt and cheese.

I was diagnosed with Interstitial Cystitis in January 2007 after suffering horrible bladder pain for months. Diet is extremely important: no sugar, no dairy, no wheat, no herbal tea, no tomatoes, no spices and no alcohol. No cheating! Even too many veggie carbohydrates can be bad. Also stop using supplements, toothpaste, mouthwash, deodorant and herbal teas for a few months to see if your symptoms improve. Hormones can also cause issues so you may want to look into that.


For everyone suffering from this disease, there is hope. I was seen as a "hopeless case" and I kept on fighting, and now I have a couple of pain free days each month. Some day it will be every day. Don't give up!

My sister was diagnosed with Interstitial Cystitis a few years ago. Even though that was a few years ago, she still feels the pain each day. I remember when she woke up every two hours to run into the bathroom. I feel really sorry for her, she's going through this early in life and it wasn't even her choice to have interstitial cystitis.

I wanted to reply to you because I to started having symptoms of Interstitial Cystitis at thirty. After a few years of pain, I was finally given Elmiron, Visteril, and Elavil. I have been on them for about 3 years with a good response. Recently though I believe I am becoming gluten intolerant. If I eat a bagel I have severe bladder pain. I cannot eat anything with artificial sweeteners, aspartame or saccharin. Also no MSG. Also make sure the medications you take, even over the counter, are gluten-free. My heart goes out to you because no deserves to be in pain everyday. Hopes this helps, don't give up trying.

Hi Jana - I just saw your comment, a year after you wrote it, and I sympathize - I was diagnosed with celiac 10 years ago, and severe endometerosis 3 years ago (for which I had surgery) and IC, 2 years ago , luckily no fibromyalgia as far as I know. The endometerosis was in my bladder as well - The gluten free diet certainly helped me with the celiac symptoms and changed my life - I am finding IC diet hard to figure out and I can't tell what sets it off. I am currently 17 weeks pregnant and the IC has flared along with chronic constipation which makes it worse - so I am working on more getting more fiber into my diet. Given my IC flared up badly after 8 years of me maintaining a 100% gluten free diet, I don't feel Gluten was the culprit for me and IC; but it seems everyone is different with IC. I am determined to try to get my IC under control before my baby is born!!

I wondered if any other Celiac/ IC sufferers had been on long term antibiotics as children? I was on Antibiotics for two years as a teenager and anti-histiamines and I am sure that mucked up my system.

Hi Lauren and Anna,

I was on antibiotics for 5 years as a teen, and at age 49 was diagnosed with IC and vulvadynia. I'm pretty sure I have fibromyalgia as well, but it only flares when I'm exceptionally stressed. So, yes, I think there's a direct connection - I mean, it's all related to a highly-functioning immune system, right? Long-term antiobiotic use has got to have an impact. When I hit age 30, I had to give up processed sugars to get stop a year long cycle of yeast infections (and it worked). I'm not celiac, but can't get my clinic to test me further for gluten sensitivity...ridiculous. So, I'm now on a gluten-free, dairy-free diet because there seems to be a lot of evidence pointing to connections, but it isn't enough yet. I haven't given up my cup-a-day of coffee though - is there any IC sufferer who can still drink coffee? Or is that another sacrifice I need to make? Thanks!

I have had issues for the last four years. It was first you may have IC, then a gastro told me I had IBS. Then back to uro to say yep you have it. I have been on Elmiron for awhile but have had hair loss lately so am looking for alternative options. I was going to try the hydrodistension procedure. My grandpa was Celiac but I tested for it awhile ago and it came back negative. I generally feel better when I avoid wheat and try to when I can. I don't know what dairy has to do with anything. Any thoughts?

I used to have a terrible problem with recurrent cystitis. Three years ago I found out I have the DQ8 gene, and decided to go gluten free. I have not had a single episode of cystitis since then.

I am in the UK. Suffered from IC and prostate inflammation for years. No doctor or consultant would connect the auto-immune nature of things attacking my whole body system. Coeliac was tested for but always came back negative. So was told I could not have gluten problems. But blood testing for Coeliac can be wrong. I had a low secretory IgA and if you have that Coeliac screens are useless and give the wrong result.

I've had so many different symptoms affecting the whole immune system and yet still no one would connect these up. I have vitamin K malabsorption and lactose intolerance - still the medical community dismiss the connections. Surely the medics must look straight to gluten for IC and prostate problems.

Anyone in the same position in the UK

Had my first instillation of DMSO, and it hurt like hell!!! It took 4 hours for the pain to lessen and burned really bad when i peed....which was the worst part. I applied Ice after and took ibuprofen. But next time i will take pain medication FIRST and ask my urologist to use anesthetic local freezing for the insertion of catheter. This happened yesterday. Today i am fine.
Also forgot to mention that alfalfa helps me a little bit with the gluten intolerance, and Cystoforce helps with gas for some reason along with alkanizing your urine.


I also switch off Detrol and onto Vesicare as detrol made my throat inflamed really bad and gave me a tight chest.


So currently on elmiron, vesicare, Dmso instillations, Marshmallow root to help coat the bladder, Quercitan for inflammation/allergies...and Percocet I will take before my next instillation!!!


Sea salt also helps with flare ups. 1 teaspoon with water. It works fast...but should be quality stuff not the dollarama stuff.

The bacteria that causes cystitis, is often from outside the urethra and goes up. It synthesizes folic acid to strengthen itself to make bacteria more prevalent and stronger. Antibiotics to defeat cystitis cause the bacteria to not ab able to use folic acid and they die. Like a buffer.


I've found gluten intol causes all mucus in my body to dry out. Mouth, eyes, skin, and yes 'down there'. If you are drier down there, the ph balance and lack of certain natural acids allows any old bacteria to go up there and manifest.

Gluten intol dehydrates me. Best thing I find, detox thoroughly, drinks loads, and for sexual relations use 'lube' as dryness aggravates it. The ecoli gets into your urethra from your anus. I also believe gluten intol etc lowers you're immune system to prevent us ladies and some men from fighting cystitis properly.

I have supposed wheat intolerance though I do believe my exclusion diet should be fully gluten-free. I've had blurry vision for 6 months whilst eating too much wheat (call it rebelling at the effort of excluding it). Plus for a year I've had at least 8 bouts of cystitis, half of which where given antibiotics from the doctor. This impinges on sexual relations between the cystitis and the Pill not working during tablet taking period.

I've got IBS, and have had symptoms of intolerance for 6 years. Fibromyalgia as a side effect and alcohol intolerance too. In fact often wheat intake makes me feel spaced out and 'drunk'.


The blurriness, cycstitis is less prevalent when detoxing off gluten. That takes 2-4 weeks to feel fully wonderful.


Gluten free is expensive. Another thing, has anyone noticed the gluten free is quite fattening and sugar laden compared to gluten based counterparts? I'd put on weight replacing items.

Now I'm only buying gluten free bread, and going without some other things. Intolerance makes tummy distend like a 5 month pregnant mother. And I've put on two stone (which I usually loose when I omit gluten). I have a high metabolism normally and fail to keep weight on.
Frustrating.

Thanks to all of you for taking the time to help others with your experiences and personal insights.
All the best to us all!

I went to to a meeting in Portland for individuals with IC. I have given up gluten and dairy products along with the "beginners IC food list." I know for sure my body is responding negatively to dairy. I'm not sure yet about the gluten. Thank you for your testimonial & encouraging those with IC to seek health.