Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


luvs2eat

Recommended Posts

luvs2eat Collaborator

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,131
    • Most Online (within 30 mins)
      7,748

    Itsabit
    Newest Member
    Itsabit
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
×
×
  • Create New...