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Member Since 09 Jun 2009
Offline Last Active Nov 04 2009 05:40 AM

Posts I've Made

In Topic: Celiac And Interstitial Cystitis

02 November 2009 - 08:14 PM

Hi, I wondering if any of you also have interstitial cystitis. I have it and it seems that I have food related problems with that as well - of course it is a bunch of different foods that have nothing to do with gluten, like, well, soy and red wine to name a couple...(I have read that this is "normal" for people with IC). I got the interstim implant and that has helped a great deal, but still have issues with it when i eat or drink something "wrong." Anyway, I find it difficult to cut out gluten (dairy is a rough one too), and everything that affects my IC - there is a list of foods that are bad for IC and it includes almost everything one can imagine, of course except bread - ha, how is that for fun! If you can sympathize, please post so i don't feel so lonely. Of course, I never really feel lonely - this is such a great site!

I also have both IC and Celiac disease. I was taking Elmiron for about 6 months, until the manufacturer switched the coatings, making Elmiron NOT gluten free anymore. That was in mid-April 2009. It was during a refill that I finally figured it out. I called the manufacturer and they claimed they couldn't tell me what was in Elmiron, due to "proprietary information." (which is a bunch of crap!!!) Elmiron used to be gluten-free. Anyway, my IC symptoms went away, until September of this year. That's how long it took to undo the repair the Elmiron (when it was gluten-free) had done. Now the lining of my bladder is completely gone! I am in pain all the time. I can't leave the house for long, sometimes not at all. I'm quite depressed.



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