Wendy Cohan, RN's Gluten-Free and Dairy-Free Cooking Classes

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.

I was diagnosed w/ interstitial cystitis in May of 2008 & then celiac disease in June 2008. I don't know which one is worse but I know that they both suck! So I to would love to here more on this topic. Thank You!

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!

My Mother had interstitial cystitis. My sister and I both have Celiac. I bet Mother had it too. She also had Sjrogen's and diabetes. Too bad we never knew about the effects of gluten.

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

Laura you may try dairy free also. I have just started gluten and dairy free for interstitial cystitis and joint pain. I'll see how it goes.

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.

Wow, I just so happened to find this site because I just found out that I too have celiac disease. I was diagnosed with IC in Nov of last year. They found it while doing my hysterectomy because of endometrosis. I found out also 2 weeks ago that I am allergic to milk, eggs, soy, wheat, peanuts, and corn. I am starving to death. I am new to all this. I am 30 years old and feel like I'm falling apart.

Hallelujah! After ten years of debilitating symptoms- stomach pain, chronic constipation, cystitis that keeps me up all night and kidney inflammation and pain- this is the first explanation that makes sense. I have been to dozens of doctors, conventional and otherwise, have been on Biltricide, six months of Diflucan and other disgusting natural anti-parasite medications but every time I stop the anti- candida diet that I've been on and off for the last five years I'm back in square one. Surely this is enough time to have starved a fungus! I have acupuncture once a week to help the pain in my legs and lower back (also retain a lot of water in my legs) and the painful meridians are always bladder, kidneys and stomach. I have worked out that its sugars and gluten that I'm reacting to, which is why I Googled it and found your info. Thank you for making sense of this ongoing hell. I already feel less physically agitated and hope to be able to finally get some sleep! By the way, if I react so strongly to gluten, does it mean I have Celiac?

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.

After a long time, I was diagnosed with interstitial cystitis about 10 years ago. Then I had a bladder distention and was on Elmiron for a couple of years. It seemed to affect my gall bladder, which went out after a while, so I stopped taking the Elmiron after a couple of years. Then, about three years ago, I felt like I was getting a lot of UTIs, but nothing was showing in my urine. I was pregnant at the time, so it was not followed-up on by my doctors very much--it's all about the health of the fetus and all of your vitals looking good. My son was born about 22 months ago and I have had chronic constipation since then, fo no good reason. I am the eat fiber/drink water/be active/eat healthfully queen. The symptoms really came to a head about a month ago again, but I did not consider IC at first. About 3 weeks ago, I noticed that my nausea got really bad when I ate wheat products, so I went basically gluten-free. Voila. Very little nausea! But I still have intractable constipation and now I am having UTI symptoms. I have to wait many days for a consultation, and who know how long after that to have another distention + Elmiron, etc. I will drink tons of water, take a bit of Ativan to help me sleep, eat very little & nothing with gluten in it and try to get by. So painful, so over-taking.

I can hardly believe I found this site, where so many others have had the gluten-IC thing both happen. Probable link, I am convinced. Wish researchers really knew about this so I could have avoided all of this discomfort and even fear. Sounds like a good grant proposal opportunity to me. Any physician/researchers out there inclined to study this?

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 have recently been diagnosed with IC and gluten sensitivity. I have been sick for 27 years, diagnosed with chronic yeast infections, migraines and then fibromyalgia. I have just begun the gluten-free diet. This is hard but if it is the answer to years of suffering I would like to know so that the next 27 will be better. We need physicians that can connect the dots!

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.

very interesting. i have ic and have benefited from elavil but would be interested to see if it has anything to do with glutin.

Dear Laura,

I also have IC and celiac with no real resolution after being strictly on the gluten free diet----any ideas?

Dear Pam,

I found with my IC and celiac that the filler Magnesium stearate which is in almost all tablets plays hell with the IC----I get all my meds formulated at a compounding pharmacy---with the added advantage of them also being guaranteed gluten free!!

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!!

Kristen, your daughter sounds like me 50 years ago, was just recently diagnosed with IC and celiac, I am completely symptom and pain free, as long as I follow both diets to a T and eat only organic with no exceptions. Have u considered a naturopathic doctor?

I was diagnosed with Interstitial Cystitis about a year ago and had given up virtually ALL foods except for those containing wheat, believing this 'white food' to be very safe. But now that I have given up gluten (although I know I don't have celiac disease), my bladder pain feels under control. It's not 100% and may never be again. But careful eating, no gluten, lots of great supplements and a small amount of Amitriptyline get me successfully through my days and nights.

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!

Hi Laurie,

My dad was diagnosed with celiac disease almost four years ago. My daughter had symptoms, but no doctor I took her to seemed to think celiac was an option. In a desperate attempt to get her some relief, I took her off of gluten and, of course, went gluten free myself to keep her company. Was I ever surprised that my interstitial cystitis went away within just a few weeks. In fact several other symptoms I had also disappeared. Since then I have had a test for celiac that was negative, but the proof for me is in how I feel. Hope the interstitial cystitis clears up for you!

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.