Jump to content
  • 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

Opinions?


Chatakat

Recommended Posts

Chatakat Newbie

So I'm looking for some other opinions to see if my issues sound like Celiac or not. This will probably get long, lol. Starting after I had my daughter 3 years ago, I began having GI issues. At first it was the occasional diarrhea, I didn't think much of it. Since then it's progressed a lot. My stomach/bowels are basically never happy. Whether it be some type of discomfort, etc..

So about 2 years ago, I started going to my doctor for these issues, and she immediately told me I have IBS, and started me on medications. I eventually tried 3-4 different medications, none of which ever helped. Most of the time they just made me constipated. The only thing that helped was the lomotil for the diarrhea/cramps. So since that worked, I just gave up and figured it was going to be this way. In september I ended up in the ER from the diarrhea/cramps/severe abdominal pain. It's one of the only times in life I was unable to function due to pain. They did some bloodwork, gave me bentyl, and sent me on my way saying flare up of IBS symptoms. My Doctor was pretty much useless at this point. I kept asking to see a GI doctor, and she literally told me that all they're going to do is scope me and find nothing wrong because I'm young. Needless to say, I switched doctor's after that. My new one was much more sympathetic to the situation. He did an ultrasound (which revealed sludge in the gallbladder) and a variety of bloodwork. Most of which came back normal except anion gap was low, and my vitamin a was extremely low. The Vit A led him to believe I have celiac. He referred me to a GI doctor, and did the bloodwork for Celiac, which came back negative. I have another two weeks before I see the GI doctor. So last week I decided to start going gluten-free in an attempt to see if it would help. And physically I do feel better, I have more energy, etc... However my bowels are still a mess.

I'm just at a loss because I can not continue to function like this. I have episodes usually at least once a week. I just had one on tuesday where I had to leave work because the pain was so bad and bentyl wasn't helping. I almost considered going to the ER again since I had chills for a bit as well, but it subsided. The episodes come out of no where sometimes. I can be feeling fine, and 10 minutes late thinking I'm going to die. My pain is almost always in the LLQ. Sometimes I can have diarrhea or bulky stools and feel fine, other times I'm miserable. I've lost 20lbs since October. I just want to feel better. :(


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



Celiac.com Sponsor (A8-M):



QueenEe Rookie

oh gosh, that must feel awful, I feel really bad for you!

I was diagnosed with celiac with negative bloodwork, just based on my experience, but as i was reading your post I recognized lots of what you described: bulky stools, pain in the lower left quarter of the abdomen, and now I'm remembering that a few years ago, before I started on this whole celiac journey, I ended up in the ER because of the pain in my abdomen. My mother was scared it was my appendix (it was on my right side then), and they did an xray, which showed a small stool in my system, but everything else was fine. the doc told me the stool shouldn't be bothering me, and sent me home. Well, if that stool shouldn't have been bothering me, then how come I ended up in the ER because of the pain it was causing?!?

Looking back, it must have been the celiac at work (or else theres something else going on inside of me that i'm not aware of :() I hope everything works out for you, but from what your describing it definitely could be celiac and something else (with your liver).

Please let us know what your tests show, i'm really curious to know what it might be. I wish you lots of luck and a speedy recovery!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,210
    • Most Online (within 30 mins)
      7,748

    BJ OConnor
    Newest Member
    BJ OConnor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.