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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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