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
Peppa-minto
Posted

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
cyberprof
Posted

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
MitziG
Posted

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
Newbee
Posted

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
Razzle Dazzle Brazell
Posted

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
Peppa-minto
Posted
  • Author

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
Takala
Posted

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
eatmeat4good
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.