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Peppa_minto

Celiac And Interstitial Cystitis?

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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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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!

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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.

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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.

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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.

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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?

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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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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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