• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Interstitual Cystitus

Rate this topic

Recommended Posts

My brother has an ongoing issue with Interstitual Cystitus. I'm not too familiar with this. And, I was hoping that I could find someone who is knowledgeable.

Can it be associated with Celaic?

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

Yes it can.

I had Interstitial Cystitis since age 20 and I was on antibiotics all the time for it.

This is one of the things that miraculously cleared up for me when I went gluten free. I had no idea this would resolve simply by eliminating gluten.

So I searched the forum here by entering Interstitial Cystitis in the search bar and low and behold there are many, many posts about IC clearing up when people go gluten free. Bladder pain and spasm were my symptoms, but urinalysis was usually clear of bacteria. However, they prescribed antibiotics anyway, repeatedly. It didn't make sense. It does now. The cause of my IC was gluten. I haven't had an attack of IC since I went gluten free. I HAVE gotten IC symptoms after getting glutened however, but then it normally clears up when the gluten is out of my system.

Do a search here....you will be amazed.

Share this post

Link to post
Share on other sites

THANK YOU SO MUCH! I will pass that on. :)

And look further.

Share this post

Link to post
Share on other sites
Ads by Google:

I was diagnosed with IC a few years ago, but I don't think it was accurate. After two rounds of antibiotics, everything got WAY worse. I have since noticed that my problem isn't simply gluten, it's all carbs/sugar...my symptoms are directly related to candida. If I eat a lot of carbs and/or sugar (even if completely gluten-free), I get the dreaded bladder spasm and the urgency/pain. Takes me forever to actually GO. As long as I adhere to my diet, I feel great. Of course, my diet drives me crazy sometimes, so I'm not always as strict as I need to be. Sometimes those dang potato chips or chips and salsa just get the best of me.

Share this post

Link to post
Share on other sites

Sure is! I have IC and Celiac too, the IC is largely controlled by a gluten free/ casein free diet. I have occasional flares still, but they are much milder than before and I do not need meds anymore.

Share this post

Link to post
Share on other sites

Ads by Google:

I had one urologist's nurse tell me that I have IC. The urologist didn't know whether I did or not (despite scoping my bladder), and tried me on overacting bladder meds, and Elmiron. Neither worked (my main symptom is just the feeling of having to go - whether I do or not), and he recommended an Interstim implant. I'm 32, and want nothing to do with such a thing, so I ran away as quickly as I could from him. No Dx and just throwing possible treatments at me? No thanks.

He blew off the fatigue I was experiencing. Thankfully, my GP is awesome, and tested for vitamin deficiencies as well as TTG IGa levels; with those results, I was referred to a GI doc and diagnosed with celiac.

Meantime, I saw a different GYN and Uro-GYN. Neither wanted to say I had IC. My mom does have IC.

I may have endometriosis, and instead of scoping me to find out, I got a Mirena IUD (since I don't want to be pregnant and that would be the first and best treatment option anyway).

So... having gotten the Mirena IUD and the Celiac Dx at about the same time, it's difficult to say whether the Mirena or the gluten-free diet is helping, but I have noticed the "frequency" (feeling of having to go - I don't actually go more than other people) slowly subsiding. Either way, I'm very happy for even a slow change. I'm not that satisfied with the Mirena, but I'm keeping it for now.

I'm also trying to get off of dairy - but I'm finding that way harder than gluten!!

Share this post

Link to post
Share on other sites

Thank you for all of this information. I have experienced chronic UTIs since childhood and was advised to stay away from fruit juices, bubble baths, soda, wear cotton underwear,  etc... These repeated infections cleared up from age 12-20 or so.  However, the infections started to reoccur again in my early twenties. These UTIs had become so painful I would have to literally sit in the bathroom for hours (urinating small amounts followed by pins and needles) until the pain would subside and I could get up without the intense pain and urgency.

Well I THOUGHT they were UTIs and would run to Urgent Care for meds until one day after my symptoms were not responding to the antibiotics, I called my primary physician. She told me the lab result came back from my urinalysis and there was no bacteria - I didn't have a UTI.  I have been to my Primary several times a year for the past few years and 90% of the time there is no bacteria present but I have the symptoms of a painful UTI. These flare ups continue to happen 3-4 times a year. I have been gluten-free since 2008 and got genetic testing in July 2011 (HLA-DQ2) but I still have these episodes and they are very disrupting and keep me home from work.  I am scheduled to see a urologist to get an accurate diagnosis. I appreciate all of the personal experiences shared here. It makes me feel validated. Thank you.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Ennis_TX, thank you for your response! I will take heed of all your nutritional pieces of advice, one by one. And yes, I am aware that a gluten marathon is on the horizon soon.   Before doing the test, however, I shall try to fortify my diet with the nutrients you mentioned, and report back in a week or two.   I think adding some iron supplement is wise too.    
    • Yeah I thought that rant might make me look like a queer after reading it a bit later.....I am straight btw I just have very long and fine hair...that yeah it blows everywhere and gets in my mouth sometimes, and always pushing it with my hands or having to tie it up.  I blew up because it sometimes feels like I am talking to a bunch jocks with buzz cuts when it comes to hair....like people that do not understand no matter what you do....it is going to end up in your mouth and you have to keep messing it and working with it when the stuff runs like 4-6" past your shoulders.
      >.< thing is some times with the way your hair is.....you do not rinse it all out...some conditioners I have used in the past used to b ones you would not rinse all the way out....it sort of does become a issue that is very easily avoided. There are many more options for gluten free shampoos now days and many companies have taken the allergy/gluten concern to heart and removed them/used alternatives to boost sales to a larger demographic. Point is while yes I did blow up about it...and honestly in many cases the "hydrolyzed wheat protein" thing is a hit and miss on if it really contained gluten, but better safe then sorry is my bet and with tons of options....why chance it?

    • B-vitamins...most gluten and processed foods are enriched...your basically eating a multivitamin every time you have a slice of bread etc. Look for a full spectrum B-vitamin supplement, others can be magnesium, iron, vitamin d, folate, etc. You mention plenty of greens and fruit so ruling out vitamin A,C,K, and a few others. Hmm did you drop off your carbs too much? If your carb dependent you need more complex carbs from like sweet potatoes, rice etc. And what about fat and protein? I am a keto dieter, my body burns fat instead of carbs for energy so I can say it is quite important to have plenty of fats and protein in your diet. Try snacking on nuts/seeds between meals or making up a protein shake with almond butter in it between meals (again going but what you said you eat vs what you might be missing)

      I use Liquid Health for my spectrum B vitamins and vitamin D. Might look into them, being in liquid form you can just add it to a beverage. Might see about magnesium also, huge issue with many with this disease.

      On other after thought, your probably already very aware of...but you mention your not "diagnosed yet" you will have to do a gluten challenge of eating gluten for a extended amount of time daily prior to getting tested. http://www.cureceliacdisease.org/screening/
    • Thanks guys! I have an endoscopy/colonoscopy  feb 5th, so we will see. I have had digestive issues for the past like 10 years. GERD, migraines, lactose intolerant, dizziness on and off starting last year. My test just always show chronic inflammation, I thought they tested for celiac last time but it was only H. pylori samples. As much as I don’t want to have celiac I’m hoping this could be the root of my problem! My doctor said I should probably go gluten free after the test regardless of the results. You guys have been so helpful!! 
    • Well was trying it in smoothies, and puddings...but yeah  I can see it especially with the jelling effects causing some issues...will try again later. I changed over to pumpkin seeds higher in zinc today for my rotation.

      PS I am allergic to corn..and any kind of sugar messes with me. SO most meds are off limits. I went with Immunity Tea from Republic of tea, Ester-C Capsules, Thayers slippery elm lazenges sugar free, and a zinc Supplement for my remedy. Oh and sugar free meds normally contain that asu what ever stuff......makes me go off the deep end mentally.
  • Upcoming Events