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

I have often wondered about the effects of long term antibiotics and IC. I was often on long term antibiotics.

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.

I have had IC for 20 years. My mom has celiac disease--I've never been tested. My bladder burns and has spasms frequency and hurts bad. I also have bad yeast problems and have been on diflucan for 3 months. I am going to go on sugar free diet as well. This site has been so helpful and encouraging for me. Milk does aggravate my bladder as well. I wonder what will be left for me to eat after I go on the gluten free sugar free milk free diet...water and meat?

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!

Wow. I am so pleased to have found this site.

For the last 15 years I have suffered from IC and then about 3 years ago I discovered I am coeliac. It all fits together and my IC symptoms have dramatically improved since I went gluten and lactose free. I kept telling doctors I knew that when my bowels felt bad my bladder felt bad but they just ignored me!

Why does the medical profession not know this stuff? They told me it was all psychological at first. In the end, I gave up my career because of it.

I have had Crohn's for over 20 years, IC for the past 15 and now I wonder about gluten! Don't think it's celiac but how do I know? I go for bladder instillations once a week, and have been doing so for five year. Never really changed my diet, and sometimes have bad habits. Recently been quite nauseated, even though my Crohn's has been under control since surgery 10 years ago. I am going to get tested tomorrow! I have felt sick all day and always feel lazy. Now, I've just been diagnosed with arthritis. All this and I'm not even 40! Would love to hear from others, too.

I have Crohn's, IC and now wonder about gluten. Just been diagnosed with arthritis. Always tired, but my Crohn's has been under control for most of my life. Would love to hear what others have to say.

Im so happy to find this site. I was diagnosed w I.C. a year ago, but have suffered for many years. I'm currently on Elmiron and Elavil, but still having pain. I'm extremely fatigued, my joints ache, my digestion is also messed up. In addition, I'm dealing with chronic candida. I'm going to inquire about being tested for food allergies/intolerances, and/or celiac. As a child was often on antibiotics for ear infections, strep, sinus infections, utis, etc. I am only 33 but feel a lot older. Thanks to everyone for sharing their stories.

I recently read about the gluten IC connection and I can say it has been a miracle. I was at work for 9 hours the other day and noticed that I had not gone to the restroom ONE TIME. I am sleeping all night without getting up once (or just once) to go to the restroom. Praise God! I am going to give up dairy and sugar just to see if my pelvic pain can completely go. I do believe it will though!

This sounds like me as a child. I could never hold my bladder from school through the day care pick up schedule back to the day care. I always had to stop to "go" on any road trip every 20 mins. was always handed cranberry juice to fix the problem. At 25, I finaly got an accurate diagnosis. Keep trying to find a doctor that will listen! Being ridiculed and punished about not being able to hold your urine long enough (while it's causing extreme pain) is humiliating and causes major psychological damage!!! My IC escalated with puberty (heads up) I believe mine would not have gotten so bad (I'm now 34) if it was treated in childhood.

Renee -

Coffee is horrible for My IC. Mornings are bad for it too, and I have my 1 cup a day every morning. Ridiculous, but it's my vice.

I also have interstitial cystitis and vulvadynia. I kept trying the interstitial cystitis network food diet, but still had random flares. I went dairy and gluten-free a few weeks ago and am doing great. I still take 50mg of Elavil each night and I drink 1 cup of 1/2 caffeinated coffee (black) with a supplement of "Prelief"(over the counter) in the morning and I've been feeling great! I even drank cranberry juice yesterday which used to set me off in a flare, but nope, nothing. I really think it's the dairy/gluten thing for me.

I was diagnosed with IC in 2008. I was diagnosed relatively young (I was only 23) and felt I was given a diagnosis and a couple of pamphlets and sent on my way. I never had any horrible problems because of the interstitial cystitis, just pain; some days were worse than others but it was manageable with some (sometimes a lot) of pain medicine.

About two years ago I developed a rash on my hands, neck and behind my ears. I went to a couple different doctors and got things from "It's just eczema" to "It's poison ivy". Each time I was given a new cream or steroid. Nothing was helping and I was getting severely irritated.

Through various souces I heard about this gluten-free diet, that it can help certain things like rashes. I did some research and found out how many products gluten is in. Not just food but EVERYTHING: dish soap, cosmetics, hair products. I went TOTALLY gluten-free, from food consumption to straightening my hair everyday instead of chancing a reaction by using product (I appreciate my curly hair a lot more than I used to). It worked. I felt amazing and the rash was going away. I went back to my original doctor and gave him my "findings", of course he wanted to test me for the allergy. After I went back on gluten for two weeks, he tested me and it came back negative for an allergy. I stuck with the gluten-free diet for about a month after that because it made me feel so good but after a while it fizzled out and I quit. Mistake.

Three months ago the rash came back, I went through every possible thing it could be in my mind. If it wasn't gluten, it has to be something else, right? I quit wearing my wedding rings thinking they needed to be cleaned or re-rodiumed. I started wearing dish washing gloves for everything. Finally, with nothing else working, I went to the most helpfull information source I have ever found. People. I started talking to everyone, anyone. I was most likely that super annoying person that you just want to go away and leave you alone. I was persistent. Many of the people I spoke to before about it were telling me the same thing: go gluten-free again. I thought, "it worked before, I'll do it again". It worked again this time, the rash started going away. I felt great! Everything was as wonderful as before and then I realized the most amazing thing. Those ibuprofens and tylenols I popped like crazy were gathering dust on the medicine shelf. I didn't hurt and I didn't even realize it. So, again, I started researching and I found so many things linking interstitial cystitis and gluten allergy/intolerance.

So my long winded blurp is this; Be your own advocate. Talk to people, do your own research. If what you have been doing isn't working then try something new. If something is working, DON'T stop.

I'm 22 years old and have been diagnosed with interstitial cystitis about 3 months ago. However my symptoms are occurred off and on since I was about 16. Like many other people with interstitial cystitis, I experience the flare ups and times of remission. In the past 3 months though I've been experiencing the worst episode of it. I went to my urologist and was put on Elmiron about a month ago so it's too soon to tell its helping yet. But at the same time I was put on Elmiron I had a bad urinary tract infection and was put on sulfa by my family doctor, and I was also passing a kidney stone at this time, well sulfa wasn't a strong enough antibiotic for the urinary tract infection I had, and either one or the other or the combination of passing kidney stones was causing all sorts of pain...urgency, frequency, abdominal pain, terrible flank pain, horrible discomfort...I had a 103 fever so I went to the emergency room and was given pain medication and the right kind of antibiotics. I passed a kidney stone and the antibiotics cleared up my urinary tract infection. But as soon as I got off my antibiotics it wasn't 3 to 5 days later and I know am back to having burning and urgency and extreme discomfort in my bladder/vagina area. It's a lot worse in the morning and as the day goes on it gets manageable as I take medicine and drink tons of water. I just don't understand why as soon as I got off my antibiotic these symptoms started again. I also am confused by my symptoms of interstitial cystitis, I understand everyone's will vary, I have the burning when I pee, I tense up when I'm peeing, it always seems like I can pee more even after I've emptied my bladder, urgency, discomfort (it's almost like I can feel the burning inside my bladder), I don't really ever have sharp or intense pains, it's all just very uncomfortable. It has made it impossible for me to be at work sometimes it's that uncomfortable. I'm not sure if anyone else out there with interstitial cystitis doesn't have the sharp pain, I would love to know. As for my diet, I eat very choice things, I stay away from a lot of fruits and try to avoid everything with citric acid, caffeine, artificial sweeteners, etc. I only drink water. No Cokes, juices, coffees because I'm too afraid of how they'll affect my bladder. I understand there are a ton of people out there that suffer from the same thing I am, it just absolutely drives me crazy. I get so upset about it, and trying to explain it to people frustrates me because someone who doesn't have it cant really understand. (I know it's not their fault, but some people have looked at me like I'm crazy) I always feel bad for my boyfriend because he puts up with me thru this and I know it has to be difficult. I freak out every time we have sex or anything of the sort because of how things will feel during and later on. Symptoms usually always get worse after I've had sex, so I've even avoided sex a lot. So I pray that the Elmiron will work for me! If anyone has ANY words of advice or tips or even similar stories I would love to hear them!

Paul, how do you find out what you are allergic to, besides trial and error (which takes a LONG time and there are a good bit of hit and miss)? I have interstitial cystitis and digestive system problems, but I have not been diagnosed with celiac disease.

Thanks for your help.

What is the website in Australia about avoiding all dairy products? It sounds like it might be a help to me. Thanks!

I have had interstitial cystitis and now digestive problems also. I have not been diagnosed with celiac disease.

How can you go totally sugar free? What can you eat? I need some suggestions. I am so tired of being hungry.

I have had interstitial cystitis for seven years. I have been taking elmiron for that long. I was told it is a placebo and is used for pain and is a sugar pill. It only masks pain and symptoms. It doesn't help the cause. I was told by a nurse that interstitial cystitis is a symptom and that it all starts in your stomach and works its way down with different bacterias, parasites, and fungus and who knows what else. Interstitial cystitis is an autoimmune problem. It is usually because of being on antibiotics and it strips your body of good bacteria and then there is no balance of both good and bad to balance out or ph balance. I have been told to make homemade kefir and homemade yogurt, eat garlic, meat, cooked vegetables, organic foods, fermented and fermented in jars that you can do. I am going to try this. This advice is from a nurse who suffered for 30 years and is now healed, not cured, but healed the nasty hellacious symptoms.

I have just found this website and have been diagnosed with interstitial cystitis for 6 years, have had wheat intolerance for many years but am having gastroscopy tomorrow. Tears are rolling as I read. I have asked the question for years regarding links and had no answers... I would very much appreciate any further information on research so I can give to doctors? In Australia I think we are somewhat behind America. Any information on autoimmune and links between these disorders would be most helpful.

I have had interstitial cystitis for 15 years and I am on the verge of being diagnosed with celiac disease. My possible symptoms of celiac disease have become more apparent in the past few years. I want to let everyone know about Prilosec. My G.I. doctor started giving me Prilosec a week ago and it has also lessened the pain of my IC!!!!! I don't go to the bathroom as often and I don't have as much pain!!!! The reason is logical--if you lessen the amount of acid in your stomach, you will also lessen the amount of acid in your bladder!! Who would have thought!! I just wanted to tell everyone.

You sound like me! Ice helps feme pads in United Kingdom. They're great! You have about an hour and a half to do what you need to do outside of the house. Baking soda: a teaspoon a day speeds up relief with flares about an hour so you can go on with your day and not feel imprisoned by this horrible disease! I've got more tips, email me!

I have been sick all my life. Bathroom issues all the time. I am 38 and only gotten worse. I can't eat very much because of the pain and agony. I have been through too many surgeries and this is hell!

Anna, I have found a lot of research involving GLUTEN and Interstitial Cystitis (actually, any autoimmune disorder for that matter... look up Dr. Alessio Fasano for more research). Get off gluten, girl! If you don't, you will continue to develop MORE autoimmune disorders. Were you diagnosed with celiac disease? They are one and the same: intolerance to gluten. Also, I have been dealing with 'cross-reactive-foods'... so for example, I'll eat oats, and when I eat oats (gluten-free of course), my body THINKS I'm eating gluten. That's why it's a cross-reactive food. I'm seeing Dr. Vikki Peterson in November in her HealthNow destination clinic (I Live in VA but will fly to CA for treatment). I hope it goes well. I hope you feel better.

Your story is right on target with mine. I was literally just diagnosed with interstitial cystitis October 23rd. My urologist checked me, next thing I knew he was sending me off to have a procedure done called, Cystoscopy-hydrodistention (research it online). First few days, I was more uncomfortable than I was prior to the procedure. But now, I notice a difference.

I have been having problems since I was 16. For years my family doctor could never tell me why... It has been a journey. But I finally feel relief knowing that I wasn't making it up. Thanks to finally being referred to the urologist. The symptoms you described are literally the same ones I was having. It has been a struggle. Try researching this, Paleo Diet... I just recently learned of it myself, so I have only been on it a few weeks. Its referred to as the "caveman" diet-based on the belief that humans are intended to eat off the land... grass fed meats, free range poultry, wild caught fish, fresh vegetables and fruits (some nuts are okay). I have learned to eat almond butter (like peanut butter) and I can't tell the difference now. Mainly, this diet cuts out grains, sugar, dairy, salt, and certain oils. So the gluten is gone. I've gone from always drinking skim milk (because of my stomach) to coconut milk/vanilla. It tastes way better than skim milk. I am not gonna lie, I have always been a picky eater until now. I have decided if it's going to make me feel better, then I will eat it! I have actually lost a few pounds/ swelling in my lower tummy is going away. I feel a huge difference! I feel better! I would love to chat with you about this and compare stories. Please feel free to e-mail me.