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Interstitial Cystitis And Elmiron
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Okay so I recently realized I never actually checked to make sure that elmiron was gluten free (I have IC). I've seen some conflicting posts on the matter. Some say the medication inside the capsule is gluten-free but the capsule itself is not. Does anyone know?

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Peppa_minto, I don't know. I do remember having GI issues when I took it, but I think they warn about that even for "normal" folks. I didn't know I had Celiac then, so I wasn't researching my meds. Elmiron was not good for me, though - I had the side effects. I also am not sure whether I have IC, so I didn't appreciate taking it! (It didn't help me, but since I may not have IC that might be why! I do hope it helps you!)

I know I read on an IC board about some people putting the pill's contents into water and drinking it. I'd talk to your pharmacist, they should be able to help you.

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Long time member needs some help.

Since this was a old post I hope some new posts on how this med worked for them.

The diet they handed me was so limiting and all foods I was eating SO need to find replacerments.

Have had 3 bouts of C-DIFF, a trip to hospital over Thanksgiving and just starting anti-depressent Pristiq so who know what is causing the cramping and mucus D.

any help so appreciated as just too tired and weak to search

Thanks in advance Judy

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Thanks for the input

infectious disease specialist said that that drug caused diarrhea and a reocurance of c diff

Of course urologist just denied it

So now I'm struggling with the pain of both I C and C-Diff.

Any ideas welcome done waiting for

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Long time member needs some help.

Since this was a old post I hope some new posts on how this med worked for them.

The diet they handed me was so limiting and all foods I was eating SO need to find replacerments.

Have had 3 bouts of C-DIFF, a trip to hospital over Thanksgiving and just starting anti-depressent Pristiq so who know what is causing the cramping and mucus D.

any help so appreciated as just too tired and weak to search

Thanks in advance Judy

So sorry to hear you are not feeling well. I do not have IC, but regarding the C diff and your diet restrictions--I've had to restrict some foods in my diet in addition to gluten containing foods due to (my interpretation) inflammatory reaction. I've had low WBC counts occasionally which I believe is adding to more susceptibility to infection. I have found The New Yorker, October 22, 2012 article, Germs Are Us, very interesting and helpful (there is reference to C. diff infection, and basically that we are eroding our gut flora and probiotics help maintain it). I have found that the diet restrictions (in addition to gluten) very narrow, but the increased health really negates any difficulty. I truly hope you feel better and wish you a very happy holiday season.

Edited by sunsetsunrise
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Thanks for your reply and the time it took to do it

Learning all I can about this drug

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    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
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