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Celiac And Interstitial Cystitis?

Peppa-minto

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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?

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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.

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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!

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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