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Anybody Else Have Endometriosis And/or Interstitial Cystitis As Well?
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Between being gluten free, allergic to nuts and eggs and sulfites and now the diets for endometriosis and IC, I have been rapidly losing weight and I truly feel that there is NOTHING left that I'm allowed to eat. Any tips on coping?

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I used to have IC symptoms. I wouldn't really recommend the IC diet...it didn't help me at all. It operates on the concept that acidic is bad and basic is better, which is silly. Whenever I have symptoms and do a UTI test strip, my urine is invariably alkaline.

I just try to lay off the caffeine and booze and drink lots of water. In the long term, the gluten-free diet has helped *a lot*. If I've been glutened recently, I pee every five minutes and pass horrible, scary things in my urine. My advice is to stay worried about the gluten-free diet and it may sort out the rest of what ails you.

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Between being gluten free, allergic to nuts and eggs and sulfites and now the diets for endometriosis and IC, I have been rapidly losing weight and I truly feel that there is NOTHING left that I'm allowed to eat. Any tips on coping?

I had symptoms of IC as well. I used the Inflammacore shake, available on Amazon, which brought down my inflammation by a lot. I seldomly have my symptoms now. :)

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I had a doctor tell me I had IC based on the potassium test - catheter, water, potassium, comparison of pain - but every step hurt like hell which, to me, is no clear diagnosis (if even water hurts there's something else going on, like the dang catheter scraping up my insides!). He then scoped me (without hydrodistension) and didn't see any damage or inflammation. I was there because the sensation of having to pee never ever went away, after coming on suddenly with what I thought was another bladder infection. My mom has IC, and I've read a lot about it. I don't have bladder spasms or pain, and I also didn't see any results - at all - from the IC diet, aloe pills, or the different meds that doc gave me (for overactive bladder or for IC, though the IC drug made my hair fall out).

 

I had other doctors tell me it could be endometriosis, and talked me into getting an IUD since that would be the first treatment anyway and I'm not looking to procreate. I've had it for about a year and will get it removed soon - terrible acne, night sweats, trouble sleeping, cramps at any time and especially during and after exercising (though not getting a period has been nice). I have not tried the endo diet, but have seen a lot of criticisms of it.

 

The sensation of needing to pee all the time started to wane nearly a year after it started, not long before I had my upper endoscopy. I was continuing to eat gluten but I think I'd cut back. I'd also started to exercise again. None of my doctors agree with me, but my suspicion is that my bladder problems related to Celiac.

 

I guess I'll find out when I get this IUD out!

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
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    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
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