Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac And Interstitial Cystitis?


Peppa-minto

Recommended Posts

Peppa-minto Apprentice

About three years ago my older sister and I were both diagnosed with IC. I was 19 and she was 24. We have both been doing better and my condition dramatically improved through the use of elmiron (and support from this forum early on).

A year ago my younger sister, who was 17, finally had her intense stomach pain diagnosed as celiac disease.

So now here I am. I have had digestion issues for years, mostly excessive gas and intense bloating. I always attributed it to eating poorly. Recently I improved my diet an lost almost twenty pounds. Still experiencing the same problems as before, I am curious about the possibility that I might too have celiacs disease. I also have random short diZzy spells that come and go, but they can be as frequent as every day. I always thought it was unrelated but is it a stymptom of celiacs?

I know celiacs is hereditary so it is possible. My brother has ibs, so I wonder about that too. I honestly don't know how to tell the difference or what I should do next. Suggestions? Thoughts?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast

About three years ago my older sister and I were both diagnosed with IC. I was 19 and she was 24. We have both been doing better and my condition dramatically improved through the use of elmiron (and support from this forum early on).

A year ago my younger sister, who was 17, finally had her intense stomach pain diagnosed as celiac disease.

So now here I am. I have had digestion issues for years, mostly excessive gas and intense bloating. I always attributed it to eating poorly. Recently I improved my diet an lost almost twenty pounds. Still experiencing the same problems as before, I am curious about the possibility that I might too have celiacs disease. I also have random short diZzy spells that come and go, but they can be as frequent as every day. I always thought it was unrelated but is it a stymptom of celiacs?

I know celiacs is hereditary so it is possible. My brother has ibs, so I wonder about that too. I honestly don't know how to tell the difference or what I should do next. Suggestions? Thoughts?

Celiac and IC can be related. But the most important thing for you to do is to get tested for celiac, as all first degree relatives (including your IBS brother) should be tested. Then it wouldn't hurt to do a gluten-free trial after the test, even if you test negative for celiac. As you probably know, it's essential to be eating gluten before and while being tested for celiac. Good luck!

MitziG Enthusiast

Yes, definitely have all of your immediate family tested for celiacs, and then, you and your sister should go gluten-free regardless of the results. A gluten free, casein free diet has almost eliminated my IC symptoms, and I do not need to take elmiron, or follow the really restrictive IC diet. There are a lot of IC sufferers with celiac disease out there- many on this board too.

Newbee Contributor

I'm reiterating what the others have said. It is very important for all first degree relatives to get checked for the disease (and get checked more than once as you can develop it later even if you don't have it now). It is common for several people in a family to test positive for the disease (even if you don't think you have symptoms of it). My brother thought he was fine but tested positive for it.

Razzle Dazzle Brazell Enthusiast

I was diagnosed with IC before discovering I have a problem with gluten. My symptoms mysteriously and miraculously seemed to disappear when I started exercising and eating low carbs and sweets. It came back when I started eating whole wheat cereals in the morning. The cramping and constant pelvic ache as well as constant urge to void all day and night returned viciously while I attempted a gluten challenge. When I don't eat gluten it is virtually gone. I eat whatever spices and acidic foods I want.

Maybe you have discovered a cause for your bladder pains. Its worth investigating. Good luck.

Peppa-minto Apprentice

Thanks everyone for the quick responses!

I stopped eating gluten yesterday and here is why: I know getting tested is important but I bought a dress for my college graduation. However, it looks hideous on me when I am bloated (I bloat very badly!!!) I graduate in four weeks and I am hoping if I stop eating te gluten I will feel better. I know I can't get tested unles I eat it... But maybe a trial run is the best test of all??? Thoughts?

Takala Enthusiast

Ditto what others said. Get tested, but try the gluten free diet anyway afterwards, even if you test supposedly negative. I am not formally diagnosed, but all my kidney / bladder symptoms cleared up on the diet. The kidneys filter calcium to control levels of it in the blood, and the excess has to go somewhere, and it gets deposited in the wrong places and causes crystals, stones, cystitis, infections. There is excess calcium in the blood, in the first place, because your BONES are getting robbed or harvested for it, because it is not being absorbed properly in the first place because of celiac damage. Taking the proper supplements calcium citrate/magnesium/Bcomplex/D can help. But the diet stops the intestinal damage, if this is your problem.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

You might be so happy gluten free that you won't need the test.

One bite of your graduation cake might be all the diagnosis you need!

Anyway, I think you are going to find that IC can be caused by gluten.

I was diagnosed with IC in my 20's.

I'm 49 and gluten free for 2 years.

No episodes of IC at all in the last 2 years.

Many posts on here in the history about IC going away after going gluten free.

It was another amazing thing that cleared up when I got rid of gluten.

I hope your IC responds as well as mine did.

Hey! Congratulations on graduating from college!

And congratulations on your new gluten free life too!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,726
    • Most Online (within 30 mins)
      7,748

    smithsis
    Newest Member
    smithsis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.