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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,940
    • Most Online (within 30 mins)
      7,748

    Joyce B
    Newest Member
    Joyce B
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.