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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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    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
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