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My Poor Daughter... Newly Diagnosed Celiac And Now Possibly Interstitial Cystitis!

luvs2eat

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luvs2eat Collaborator
luvs2eat
Posted

The celiac disease she wasn't upset about ... she's been dealing w/ my ceilac and my middle daughter's for years ... and she lives in Portland, where there are fabulous gluten free bakeries and restaurants. But the pelvic pain and the feeling that her bladder wasn't emptying completely led her to a diagnosis of IC. She's now really bummed, cause an IC diet makes a gluten-free diet look like a piece of cake.

She ended up at a gyno/urology specialist who completely pooh-poohed an IC diagnosis. She told her that the information she found on the internet was simply sites looking for donations! (I told her that if her IC could be cured... she'd happily give them $$!!)

Anyhow... she was so upset. There aren't specialists after this highly specialized doctor and she felt blown off and dismissed!

Luckily, the doctor prescribed physical therapy and she found herself w/ an awesome woman who believes she can absolutely help her and had all sorts of really good naturopathic ideas. She's still following the IC eating regimen and is, at least, more encouraged.

I've seen IC discussions on the board. Any IC sufferers out there who can give me words of encouragement I can pass along?

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ravenwoodglass Mentor
ravenwoodglass
Posted

If she is newly diagnosed with celiac she may find the IC resolves pretty quickly. I haven't had an issue with it since shortly after going gluten free. For me it seems gluten causes as much of an issue when it exits the body as it does while inside. I have issues with burning bleeding and discomfort when glutened but they resolve pretty quick as long as I remain gluten free. Hopefully the same will happen with her.

luvs2eat Collaborator
luvs2eat
Posted
  • Author

Actually... looking back on it, she had the IC symptoms before the celiac ones. She had a uterine cyst removed and thought that would be the end to her pelvic pain. It was at that time she was diagnosed w/ celiac and she went immediately and pretty easily gluten-free. The pelvic pain continued and, in researching IC, she could put a face to the almost instant pelvic pain she experienced after drinking OJ.

Even if she doesn't have IC... the gyno/uro doc told her to keep to the IC diet, which she's trying hard to do, until physical therapy can retrain her bladder. It's really getting her down as she comes to terms w/ having to always eat at home and/or have her own food w/ her at all times.

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