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Long Shot - Urinary Tract Issues And Celiac


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17 replies to this topic

#16 MitziG

 
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Posted 03 October 2012 - 06:36 PM

Yes. If you want celiac testing, you MUST continue eating gluten thru the time of endoscopy or you run a high risk of false negative.
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#17 smpalesh

 
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Posted 04 October 2012 - 06:50 AM

I'm sorry, but this information is not correct. There are definitive tests to diagnose interstitial cystitis. http://www.mayoclini...s-and-diagnosis I had a cystoscopy and a biopsy among other tests. These tests will show damage to the bladder wall if there is interstitial cystitis. If you did not have these tests then there is no way you could be officially diagnosed with IC. If you were diagnosed with IC with no medical tests then some dr was not practicing correctly. I'm not doubting your story but I don't want anyone to believe the interstitial cystitis is simply a diagnosis of exclusion because it isn't.

I was misdiagnosed with Interstitial Cystitis as well. It's what started this whole mess...thought I had a UTI - was put on two rounds of strong antibiotics which of course only made everything worse (Dr. said "I don't see evidence of an infection, but here take these...really???). After that was when I got the diagnosis. Read up about it and certain things never seemed to fit with how I was feeling. Refused the medication that is normally prescribed because of the harsh side effects. Took full strength Aloe which did wonders (found the recommendation on the IC website). Long story short, bc of many other symptoms, I finally hit on celiac and gluten-free. Bc of my trust issues with doctors, I decided to try gluten-free on my own. My bladder symptoms resolved along with a few others. After that, tried to get formal diagnosis, but had been gluten-free for too long. Tried the gluten challenge, but could only handle two weeks before I was so miserable that it wasn't worth it. Only time I have bladder issues now is if I get glutened or if I have too much sugar/carbs which sends my candida out of control (ate two gluten-free cupcakes last night...today I'm miserable). I do realize that IC is a real thing that many actually DO have. I'm just also saying that since there is no definitive test for it, sometimes they will give you that diagnosis when they can't figure out why you have pain with no infection.


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#18 ndw3363

 
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Posted 04 October 2012 - 09:41 AM

I'm sorry, but this information is not correct. There are definitive tests to diagnose interstitial cystitis. http://www.mayoclini...s-and-diagnosis I had a cystoscopy and a biopsy among other tests. These tests will show damage to the bladder wall if there is interstitial cystitis. If you did not have these tests then there is no way you could be officially diagnosed with IC. If you were diagnosed with IC with no medical tests then some dr was not practicing correctly. I'm not doubting your story but I don't want anyone to believe the interstitial cystitis is simply a diagnosis of exclusion because it isn't.


Thank you for that - I wasn't aware. My "diagnosis" came from the NP at my GYN office - she was a self-proclaimed IC "expert" and never preformed any of those tests. Just gave me the Rx and the website and sent me on my way...reading all of the information on the website was what convinced me that she was wrong. I have such sympathy for anyone that truly has the condition - I know how awful I felt at the time and how blessed I feel that I was able to get to the bottom of what was causing such horrible symptoms. Because of all of this, I'm a HUGE fan of second opinions and doing some independent research before taking any prescription medication that was given without testing (most especially antibiotics - I won't take another unless it will actually save my life). Thanks again for the information - one of the many reasons I come here all the time - bunch of smarties :)
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