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Interstitial Cystitis and Gluten Intolerance

I have to admit to being overwhelmed with the response to the article on Gluten Sensitivity and Bladder Disease.  Thanks to everyone who wrote in, here and to me personally.  The article has been picked up not only by Celiac sites, but by sites that support people who have Intersititial Cystitis, and that honestly thrills me, because it doubles the number of people who have the potential to get better by going gluten-free.  Today I met a naturopath who
said she had just seen the first published study suggesting a link between these two diseases.  I will track it down and post the link in this blog, for others to see.  A local MD here in Portland has agreed to help me with the support group and clinical trial for treating bladder pain with a gluten-free diet, and officially track the results.  This is all very gratifying for me, to finally see some progress after so many years. 

I'll keep you posted...

Wendy

As always, Celiac.com welcomes your comments (see below).


Spread The Word



88 Responses:

 
patty d

said this on
18 Sep 2008 8:28:56 AM PST
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.

 
Anna

said this on
10 Aug 2012 6:17:01 PM PST
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.

 
Cindy

said this on
19 Sep 2008 7:28:22 AM PST
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!

 
mark lockett md

said this on
22 Sep 2008 9:20:46 AM PST
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!

 
Mary Ann

said this on
07 Oct 2008 6:26:14 PM PST
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.

 
Laura Sheffler

said this on
09 Oct 2008 3:11:15 AM PST
I wish my IC had gone away when I stopped gluten. It didn't work for me!

 
Ann Hamilton

said this on
06 Jan 2010 6:14:54 PM PST
Dear Laura,

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

 
Anthony Brea

said this on
12 May 2011 1:18:56 AM PST
There are cross-reactions between gluten and other foods like coffee and non-gluten grains.

 
Paola

said this on
22 Oct 2012 9:55:58 AM PST
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.

 
Irene

said this on
10 Jun 2013 6:40:19 AM PST
Did you also suffer from thyroid disease?

 
said this on
18 Mar 2011 9:08:18 PM PST
Hi Laura,

You might have some luck also excluding all grain, starch, and sugar from your diet. "Breaking the Vicious Cycle" by Elaine Gottschall goes into further detail on the Selected Carbohydrate Diet or SCD. My dauther and I were diagnosed by Entero lab fecal test, (you can do this yourself by going to www.enterolab.com), and now after adjusting our kitchen, have much better vitality. Keep in mind that it is an elimination diet meant to narrow your sensitivity down. Doing it for the recommended 6 mos, will allow you to start at ground zero and add one thing at time to notice any reactions.

We went further and even eliminated all dairy. Now, two years later, we do some gee occasionally as well as rice. But will always maintain the gluten free.

Good Luck.

 
Paul Austin DC

said this on
25 Aug 2011 9:16:33 AM PST
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.

 
Mahin

said this on
07 Jul 2012 8:08:07 PM PST
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.

 
Reyna

said this on
28 Jul 2012 3:22:36 PM PST
I have had interstitial cystitis and now digestive problems also. I have not been diagnosed with celiac disease.

 
Dani

said this on
18 Mar 2013 4:45:11 PM PST
Try sugar and gluten; gluten by itself didn't work for me

 
Afifah

said this on
08 Jul 2014 7:52:08 AM PST
Dear Laura, This reply comes six years after you posted your comment, but I have only just seen it. I hope things have improved now re your IC, but if not I suggest getting off ALL cereal grains, including those labelled 'gluten free' as in my experience some people are sensitive to the proteins in these other grains too, not simply the wheat, rye and barley +/- oats sort. Corn/maize is very much in the frame, but so is rice, sorghum, buckwheat, quinoa and chia. They are all grass or grass-like seeds, and their proteins are very irritation to most humans, effecting one organ/tissue or another. Ditch the lot for at least six months, and see how you fare. Good luck.

 
jacki

said this on
30 Oct 2008 1:02:44 PM PST
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.

 
Laurie

said this on
11 Nov 2008 2:26:54 PM PST
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.

 
Kimberly

said this on
12 May 2010 6:55:11 PM PST
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!

 
Loretta

said this on
20 Nov 2008 5:38:54 AM PST
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.

 
stacie

said this on
17 Dec 2008 5:28:54 PM PST
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.

 
kirstie

said this on
31 Mar 2011 10:05:55 AM PST
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.

 
Suzy

said this on
25 Feb 2009 10:30:03 PM PST
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?

 
Pam

said this on
05 Apr 2009 10:18:15 AM PST
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.

 
Ann Hamilton

said this on
06 Jan 2010 6:19:17 PM PST
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!!

 
Natalie

said this on
23 May 2010 1:25:13 PM PST
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...

 
Sue

said this on
04 Jun 2009 5:22:58 PM PST
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?

 
Kris

said this on
27 Jul 2009 5:39:34 PM PST
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.

 
Janice

said this on
05 Nov 2009 2:50:26 PM PST
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!

 
Bob

said this on
03 Dec 2009 2:04:27 PM PST
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.

 
Terry (female)

said this on
28 Jul 2012 1:13:36 PM PST
What is the website in Australia about avoiding all dairy products? It sounds like it might be a help to me. Thanks!

 
Wendy Smith

said this on
23 Jun 2013 4:03:12 AM PST
Hi I'm from Western Australia. I've got interstitial cystitis. I'm looking for info about avoiding dairy products. Have you heard what the website in Australia is? Thank you.

 
Wendy Smith

said this on
23 Jun 2013 3:58:34 AM PST
Hi I'm from Western Australia. I was diagnosed in 2008 with interstitial cystitis. I have had some small outbreaks, but nothing like now. It's gotten quite bad. I was reading your comments and saw you found a website in Australia. Please can you let me know what it is? Thank you.

 
teresa

said this on
30 Dec 2009 1:28:11 PM PST
very interesting. i have ic and have benefited from elavil but would be interested to see if it has anything to do with glutin.

 
Kristen

said this on
17 Jan 2010 6:57:41 PM PST
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!!

 
stella

said this on
27 Jan 2010 8:21:15 PM PST
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?

 
Kathleen

said this on
29 Apr 2010 4:57:25 AM PST
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.

 
Sally

said this on
23 Mar 2012 8:13:43 PM PST
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.

 
Randi K

said this on
15 Apr 2010 7:43:48 PM PST
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.

 
Gillian King

said this on
04 May 2010 6:56:29 AM PST
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!

 
Becky

said this on
09 Jul 2010 9:58:55 PM PST
Gillian your post caught my attention on here, I would love to be able to chat with you about your IC symptoms and diet in greater detail.

 
Desiree

said this on
13 May 2010 9:32:34 AM PST
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.

 
Jana

said this on
13 Jul 2010 3:56:55 AM PST
Hi, I just came across this site, I have endometerosis, IC,Celiacs and the worst: fibromyalgia!!! I cant sleep I'm always in pain and because I have all these issues I have horrible insurance and cant get the help I need to make myself feel better. I thought once I was diagnosed with celiacs and took the gluten out I would feel a lot better and truth is I don't. I just would love a day where I'm not in pain. I would love to hear from anyone on what works for them. Any advice I would greatly appreciate I'm only 30 I have a lot of life to live and I want to live it, but not like this. Thanks

 
Beth

said this on
20 Jul 2010 4:49:56 PM PST
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.

 
wendy cohan

said this on
11 Jul 2011 8:53:54 PM PST
Hi Jana,

I wondered if you are doing any better a year later? Sometimes it takes awhile to heal from celiac disease. Let us know how you are doing.

Wendy (the article author)

 
Anna

said this on
16 Sep 2011 1:34:53 PM PST
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.

 
lauren

said this on
31 Oct 2011 1:21:42 PM PST
I have often wondered about the effects of long term antibiotics and IC. I was often on long term antibiotics.

 
Renee

said this on
22 Jan 2012 10:30:32 PM PST
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!

 
Sally

said this on
23 Mar 2012 8:23:44 PM PST
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.

 
Kyrsten

said this on
19 May 2015 2:29:25 PM PST
This is such an informative discussion! I was just wondering if there were other IC patients who drink coffee like me. Guess so.

***

I have IC and my paternal aunt has celiac, for which I'm waiting on gene test results. I am pretty sure my dad may have celiac, he is almost always sick or moody or anxious. I've been gluten free for 4+ years and though it hasn't healed my IC, it improved the symptoms of fibromyalgia, mood swings and anxiety I was experiencing. I also eliminated dairy about a year ago, with some slips here and there. I still drink coffee--I do find that without it I have flares, but maybe not as much, but I don't want to give it up. I dilute it a lot and that seems to help, or stick to a decaf espresso in the a.m.

The link between gluten sensitivity or celiac and IC is plain as day for me. Unfortunately, I get the Fibro symptoms too, but haven't been officially diagnosed. I cannot wait to get my gene test results back, and the results of my biopsy which they said might possibly have mild villous blunting, even after four years free of gluten.

I am a staunch advocate for celiac and NCGS awareness, I would love to see more research on the connection between it and IC. IC is awful. I treat mine with a half tab of vicodin sometimes or MM, which is controversial, but the distillations don't have any heartening draw for me and sound awful, so do other pharmaceuticals. When it gets bad, I take hot showers, use an ice pack, and knock myself out (if I can). I drink a ton of water, but make sure to supplement with a banana or coconut water, due to the loss of potassium that can result from hyper loading on water. I had to go to the ER once after a very acidic coffee sent me into the worst flare I've ever had. Even the morphine didn't cut into it immediately. Since that time, I make sure I am always on top of the tiniest flare.

The other thing I was diagnosed with is Pelvic Floor Tension Myalgia, so I make sure to stretch many times a week. It helps. I also do a lot of high-octane tabata workouts, which likely causes the flares to exacerbate, but hell if I'm going to be out of shape and in pain.

So bottom line, these are the resources you will likely need:

A doctor who can prescribe proper emergency pain medicine/MM card if you're brave (I am learning more about oils, the raw plant and edibles, check out the IC-Network for articles it's SO important to have proper pain management)
Get all the tests you can (I got diagnosed through a bladder distension and symptoms, after I was prescribed an insane amount of antibiotics over the course of many years)
If your insurance won't approve a test, look up the current research (Mayo Clinic/University of Chicago) and file a grievance. This has worked for me twice now, but am still waiting on proper integration of all of my diagnosis and a more formal pain management protocol
Stress reduction routines, such as yoga, somatic meditation, gentle walking, writing or talk therapy to deal with the chronic pain/systematic stresses
Dairy and gluten free diet, low to no sugar (I know, bummer. I struggle with this)
Eat whole foods, very little processed if you can, I am much better when I eat this way predominately
Unfortunately, I can't eat out, except farmer's markets for fresh fruit and produce and dedicated celiac facilities, but it's just not worth the pain of getting sick. I have no idea how I will travel. I make all of my food at home in my own kitchen. My roommate is not gluten-free, but my partner is so that helps, although I know I likely flare up from my roommates cooking crumbs and traces
I work part-time, can't do as much stress as normal people. I accept this and anyone who fights me on it can suck it, I've had to accept it over the years. I still do too much, and could learn from lowering my anxiety.

Riding a bicycle can flare me up, same with intense hiking and running. I stick with short tabata workouts (12 min/3x a week) and gentle walking/yoga
Sex also causes flareups a lot of the time but that doesn't stop me. I just vocalize my needs and stop if it hurts. And get creative.

It's all interconnected, it's crazy we only diagnose one body system at a time and have to hunt so hard for answers.

 
Kyrsten

said this on
19 May 2015 2:30:15 PM PST
I have IC and my aunt has celiac, for which I'm waiting on gene test results. I've been gluten free for 4+ years and though it hasn't healed my IC, it improved the symptoms of fibromyalgia, mood swings and anxiety I was experiencing. I also eliminated dairy about a year ago, with some slips here and there. I still drink coffee--I do find that without it I have flares, but maybe not as much, but I don't want to give it up. I dilute it a lot and that seems to help, or stick to a decaf espresso in the a.m.

The link between gluten sensitivity or Celiac and IC is plain as day for me. Unfortunately, I get the Fibro symptoms too, but haven't been officially diagnosed. I cannot wait to get my gene test results back, and the results of my biopsy which they said might possibly have mild villous blunting, even after four years free of gluten.

I am a staunch advocate for Celiac and NCGS awareness, I would love to see more research on the connection between it and IC. IC is awful. I treat mine with a half tab of vicodin sometimes or MM, which is controversial, but the distillations don't have any heartening draw for me and sound awful, so do other pharmaceuticals. When it gets bad, I take hot showers, use an ice pack, and knock myself out (if I can). I drink a ton of water, but make sure to supplement with a banana or coconut water, due to the loss of potassium that can result from hyper loading on water. I had to go to the ER once after a very acidic coffee sent me into the worst flare I've ever had. Even the morphine didn't cut into it immediately. Since that time, I make sure I am always on top of the tiniest flare.

The other thing I was diagnosed with is Pelvic Floor Tension Myalgia, so I make sure to stretch many times a week. It helps. I also do a lot of high-octane tabata workouts, which likely causes the flares to exacerbate, but hell if I'm going to be out of shape and in pain.

So bottom line, these are the resources you will likely need:

A doctor who can prescribe proper emergency pain medicine/MM card if you're brave (I am learning more about oils, the raw plant and edibles, check out the IC-Network for articles it's SO important to have proper pain management)
Get all the tests you can (I got diagnosed through a bladder distension and symptoms, after I was prescribed an insane amount of antibiotics over the course of many years)
If your insurance won't approve a test, look up the current research (Mayo Clinic/University of Chicago) and file a grievance. This has worked for me twice now, but am still waiting on proper integration of all of my diagnosis and a more formal pain management protocol
Stress reduction routines, such as yoga, somatic meditation, gentle walking, writing or talk therapy to deal with the chronic pain/systematic stresses
Dairy and gluten free diet, low to no sugar (I know, bummer. I struggle with this)
Eat whole foods, very little processed if you can, I am much better when I eat this way predominately
Unfortunately, I can't eat out, except farmer's markets for fresh fruit and produce and dedicated celiac facilities, but it's just not worth the pain of getting sick. I have no idea how I will travel. I make all of my food at home in my own kitchen. My roommate is not gluten-free, but my partner is so that helps, although I know I likely flare up from my roommates cooking crumbs and traces
I work part-time, can't do as much stress as normal people. I accept this and anyone who fights me on it can suck it, I've had to accept it over the years. I still do too much, and could learn from lowering my anxiety.

Riding a bicycle can flare me up, same with intense hiking and running. I stick with short tabata workouts (12 min/3x a week) and gentle walking/yoga
Sex also causes flareups a lot of the time but that doesn't stop me. I just vocalize my needs and stop if it hurts. And get creative.

It's all interconnected, it's crazy we only diagnose one body system at a time and have to hunt so hard for answers.

 
Jen

said this on
27 May 2012 5:13:41 PM PST
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.

 
Kelley

said this on
30 Oct 2011 4:09:46 PM PST
Jana - don't know if you will receive this since your post was some time ago. I am almost identical to you and I am starting the Acid Akaline Diet right after my hydrodistension on Tuesday. I am writing a blog to track all the progress by making these changes. Contact me if you would like some feedback.

 
Natalie

said this on
24 Aug 2010 4:20:19 PM PST
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?

 
Sara

said this on
12 Sep 2010 12:24:51 PM PST
I've had obvious problems for 10 years, and several years after diagnosis of chronic fatigue syndrome and vulvar pain syndrome, was diagnosed with IC. Took Elmiron and hydroxizine for 2 years, then quit the hydorxyzine. Never had bladder pain but the other pain that prevents marital relations never ended. Had horrible cankor sores and other symptoms...recently a doctor suggested I go gluten-free. The soy in gluten free products is what I think has been giving me tummy aches, which I didn't have before (except for bouts of bloating). So I'm about to go gluten/soy free.

It's a long story but the thing I want to share that may help is that I've learned from gluten free sites is that gluten sensitive folks often develop intolerances to other grains as well. The ideal thing to do would be to go on an extreme Elimination Diet, after which you add one grain or food type (like dairy) back into your diet at a time and see what happens. Apparently after cleaning out, sometimes your body can handle some of the foods you couldn't before. I personally can't figure out how to manage that and live my life too, so I'm just trying gluten-soy free, which is plenty hassle enough!

Also, I had been dairy limited for 20 years before any of this started, plus the IC diet...sometimes I want to cry because it's hard to find anything to eat. But I do think that after I'm better there will be some things I can eat again in small amounts. although perhaps not gluten.

One other thing for IC: find a wonderful psychiatrist (doctor of muscle-bone-nerve) - not a surgeon! - to check your pelvic alignment. Mine (a former female dancer) found a problem with my pelvis that was pinching my sciatica on one side, which would aggravate any nerve problems caused by IC. The physical therapy has improved that for me...all my pain was on the left side, same as the pelvic misalignment. Bodies are so complicated!

 
Hallie

said this on
19 Nov 2010 2:43:55 AM PST
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.

 
Connie

said this on
14 Dec 2010 7:56:21 AM PST
I was diagnosed with severe IC 10 years ago. In addition I also have IBS, Fibromyalgia and Chronic Fatigue. Within in the last couple years I lost 30 pounds, had problems with indigestion and the IC and other conditions worsened. My MD attributed it to the IBS.

Now my 35 year old son is experiencing peripheral neuropathy severe pain in his feet and fatigue and weight loss. He is on a quest to find out what is causing the pain and Celiacs Disease has been mentioned as a possibility. He will be having a biopsy this week.

My daughter-in-law forwarded me this site. We are anxious to find out the results on my son as it is possible we both have Celiacs and may finally get on the path to relief.
Connie

 
Peter

said this on
25 Dec 2010 2:05:16 AM PST
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

 
Sherah

said this on
28 Jan 2011 1:49:34 PM PST
Im 24 yrs old and was diagnosed with I.c about 10 yrs ago, after a few bladder infections and then many trips to the doctors to run tests. I was also told that i had IBS ten yrs ago too. Not to mention ulcers. I seen a blood analyst and he told me to try taking Aloe Vera. So i did (It has to be freeze dried....a specific kind) The brand i used was called "Vitazan" although they no longer make it. Now i would have to order from Desert harvest and it is expensive for me. Any way i stopped taking it when vitazan stopped making it. Since then i have been living with horrible urgency and frequency. I wake up 3-6 x a night....and pee probably 15-22 x a day. Last year i had an allergy test and found i have MANY MANY allergies.....Gluten, mold, sugar in milk called lactabumin, chicken, rice, cocao...etc. Not to long after this i went back to my blood analyst who now works with a biofeedback machine. ..and I asked him to check my allergies and he gave me a list of the top 5. Mold was #1, Gluten/wheat was #2 and Sugar was #3. So since then i have found that sugar and gluten make my life hell. It increases the urgency and frequency....and gluten just plain hurts my stomach (gas/bloating) I am currently on Detrol ( a bladder antispasmodic), i daily take quercitan.....just started taking marshmallow root in pill form..and i am about to start taking Elmiron and getting bladder instillations of Dmso. If the first treatment goes well with the instillation...I will continue. I will also try Elmiron for 6 months and see what happens. If all else fails....I will have to cough up the $$$ and go back to ordering Alove Vera since i felt great when i took it and had no side affects.

I might also try glucosimine. Why not?
I also tried Gotu Kola..I think it made me worse...
Any ways...its nice to know I'm not alone in this.
Keep the FAITH...Don't give up!!!

 
Sherah

said this on
04 Feb 2011 10:56:06 AM PST
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.

 
Sherah

said this on
24 Feb 2011 9:12:59 AM PST
I have just seen a Homeopathic, and he thinks that the bladder/Stomach problems are due to E.Coli. He asked if I had ever been food poisoned....and I don't recall. However he showed me the symptoms and I had them! One of which is poor memory along with the digestive/urinary problems.

He made a mixture for me to take...with was combined of 5 different things. The one for E.Coli is called Collibaclinum.
(don't just take it...go and see a homeopath*)

I have just started taking it....and we will see how it goes. But if i have all the symptoms...it makes sense. There is a cause for cystitis/IBS.....and i am going to find out!!! I'm tired of treating symptoms!!~ The cause WILL be found. :)

Ps. someone told me that we all carry E. Coli in our bodies, but there is many strains of it. You can also get it from drinking contaminated water. I asked the homepathic guy why a doctor would never have found it....as my urine had been tested for bacteria? and he said that the bacteria is in my stomach....and then passes down to the bladder. If my stomach has never been tested than how would i know?...because that's where it originates from. So yea...... E.Coli should definitely be researched as a cause! It's worth checking.

 
Kelly

said this on
13 Apr 2011 6:34:49 AM PST
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.

 
Kat

said this on
07 Mar 2011 9:06:22 PM PST
I have had IC for about five years (diagnosed) but was a chronic bedwetter as a child too. Nothing really helped until a naturopath suggested trying Gf diet, and I went from crippled and unable to even wear high heels (too much jarring on the bladder) to being able to jump up and down again within a week. I still suffer from flare ups but I am a million times better in comparison.

Rescue remedy for flare ups: Gatorade (don't know why, but it works), Quercetin (or if you can't afford it, ginger TravelCalm tablets help too) and aloe vera drinks. Slippery elm seems to calm down burny bladder symptoms and Buscopan stops that nasty burny cramping...... good luck folks

 
Kelly

said this on
13 Apr 2011 6:27:58 AM PST
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.

 
Taysic21

said this on
30 May 2011 7:35:34 PM PST
I can confirm I have bladder burning/intense pain and I've been Celiac for years...

 
Helen macdonald

said this on
04 Sep 2011 8:35:53 AM PST
Thanks to all of you for taking the time to help others with your experiences and personal insights.
All the best to us all!

 
said this on
24 Sep 2011 1:03:23 PM PST
Thanks so much for this book. I have IC, migraines, body aches, depression, exhaustion, ulcerative colitis, etc. I was suffering everyday and this had been going on for eight years. Well I had those things. No one was ever able to put the pieces of all of these things together. Finally I ran across the idea that it could be gluten, food allergies or food sensitivities on the IC network. I am so happy I found your book. I gave up gluten, dairy and followed many of the suggestions in your well-written book. I am already feeling so much better and it has only been three weeks. The frequency is gone and so are the migraines. It feels like a miracle. I was at the point where I couldn't tolerate the symptoms any longer, so I am still in disbelief that the solution was so simple. I just recently went to a new urologist who suggested to me that it would be too hard to try this diet and that it wouldn't likely help. Some in the medical profession still have so much to learn. This diet is such an easy solution to my symptoms and I am so grateful for it. Thanks again for your help and advice. The money I paid for your book was the best I've ever spent.

 
Tanya

said this on
15 Nov 2011 2:55:04 AM PST
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.

 
Jennifer

said this on
27 Dec 2011 7:25:13 AM PST
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?

 
Reyna

said this on
28 Jul 2012 4:17:34 PM PST
How can you go totally sugar free? What can you eat? I need some suggestions. I am so tired of being hungry.

 
John

said this on
01 Feb 2012 10:52:10 AM PST
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.

 
jody

said this on
19 Feb 2012 5:52:49 PM PST
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.

 
jody

said this on
19 Feb 2012 5:50:45 PM PST
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.

 
Jen

said this on
26 Feb 2012 11:09:52 AM PST
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.

 
Kat

said this on
20 Mar 2012 12:44:39 PM PST
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!

 
Sara

said this on
31 May 2012 11:43:15 PM PST
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.

 
Courtany

said this on
13 Jun 2012 8:00:47 AM PST
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!

 
deanna

said this on
28 Aug 2012 7:56:48 PM PST
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!

 
Megan

said this on
13 Nov 2012 12:47:43 AM PST
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.

 
Erin

said this on
08 Jun 2013 12:16:18 PM PST
Your story is so similar to mine. I am 35 years old and this has been recurring for me since my early 20s. Since childhood, I have had reoccurring UTIs. They started again around age 21 with a vengeance. Since my early 30s, I have had what I thought were severe UTI's that come on all of a sudden and send me to urgent care, only to get a call from my primary doctor a few days later telling me the lab culture shows there is no bacteria - yet I am in PAIN!!! It is so painful I sit in the bathroom sometimes for hours because if the urgency, burning and trickling of urine. My urethra and bladder burn like pins and needles and there is an ache in my bladder also. I have wheat intolerance and upon genetic testing in 2011, I have one celiac gene HLA-DQ2. I am waiting for a referral to a urologist to see what is going on. I have been gluten-free since May 2008, but these flare ups happen 3-4 times a year for me.

 
Trose

said this on
31 Oct 2013 5:44:37 PM PST
I recently suffered from symptoms of IC for over a month. Instead of taking medication, I decided to give up sugar for a week. It finally and completely disappeared! Give it a try. The only thing you have to lose is maybe a little weight.

 
Zoe

said this on
31 Jul 2012 6:54:22 PM PST
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.

 
Reyna

said this on
28 Jul 2012 4:30:07 PM PST
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.

 
Reyna

said this on
02 Oct 2012 8:26:38 AM PST
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!

 
joanne

said this on
29 Mar 2013 10:59:34 PM PST
My 8 year old daughter has just recently been diagnosed with celiac disease. She also has constant bladder problems. I at first thought that the bladder problems were related to the kidney surgery that she had when she was two. I recently have been diagnosed with IC and I am wondering if perhaps this is what is causing her bladder problems. My mother and maternal grandfather had celiac disease, my sister has had severe endometrosis, my other sister has Hashimoto's disease. I am currently being tested for Hashimoto's disease (hypothyroidism). It would seem that a lot of these conditions are autoimmune related. Now I am questioning whether there is a connection between the thyroid and IC and celiac disease. If anyone has any information on these connections I would greatly appreciate hearing about them.

 
T Charlotte

said this on
08 Apr 2013 12:26:56 PM PST
I have had interstitial cystitis for four years. I can pretty much keep my symptoms away by following a strictly gluten-free diet. Going gluten-free has also helped with chronic acid reflux, eczema, and severe adult acne. I can not explain the correlation between gluten and IC, but after reading theses posts, there must be a biological connection.

One more thing, avoiding gluten is the hardest thing I have ever done. I love bread, cookies, cake, pizza, and pasta. From time to time, I will give in to a craving. I always, and I mean always, will pay for the mistake with a bladder flare up.

 
Megan

said this on
21 Dec 2013 7:16:43 PM PST
For the past two years I have been in excruciating pain with both interstitial cystitis and vulvodynia. I had to go to the bathroom around 30 times a day, and it felt like I had a constant UTI. Also, I suffered from extreme vulvar burning. Right around the time these symptoms began, I also started having horrible acid reflux after many meals. In particular if I drank a beer, my acid reflux would instantly flare, and my bladder symptoms would worsen within the hour.

I was never tested for celiac, and after seeing countless medical doctors, gynocologists, and specialists many of them said they couldn't help me because there is no infection.

After seeing a highly recommended chiropractor who is also a nutrition specialist and accupunturist as a last resort I had almost lost hope. He told me to go gluten free as well as dairy free. Slowly but steadily I began feeling much better. I noticed results about three weeks after I began the diet, but it's been two months and I feel 90% cured!!! Thank you, God! My chiropractor said it should take many months for all of the gluten to leave my system, and even longer for my bladder to fully recover. I know I will be 100% well in the next year or so. Pelvic floor physical therapy has helped me as well, and now that the gluten is eliminated I expect that to be even more beneficial.

Good luck to everyone who is sick! It believe there is a cure for anything as long as you do your research and are disciplined. Life gets better!

 
Joy

said this on
17 Jan 2015 11:10:09 AM PST
To Anyone who can answer,
My question is this...Do you have to eliminate gluten (or dairy) 100% to feel a difference if you are gluten(or dairy) intolerant (I know you do for celiac) An example would be a piece of lasagna once in a while or some salad dressing or something small and occasional. Do you have to start over at that point or can you still get results with a 95% gluten free diet? I'm trying very hard to be good but I don't want to feel guilty over something small once in a while.
I was diagnosed 6 years ago with unexplained small fiber neuropathy. Around that time I also developed chronic headaches, joint pain, many tummy troubles including constipation, and for the past year and a half I have had IC . I've also had endometriosis since I was 16( I am now 41). I've been tested for many things but all my blood work and tests have been normal. Any thoughts would be much appreciated.




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