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

Would Some Of The More Advanced Members Tell Me?


alabama girl

Recommended Posts

alabama girl Newbie

For the last eight months, I have had horrible bloating on and off(feel like somebody's pumping my stomach up to my throat); sciatica,knee, hip and back pain; left lower abdominal pain on and off; constant pain in my left side like a "stitch in the side" on and off; rib sensitivity on that side; left groin pressure like a balloon is blowing up over my groin off and on; and feeling like there is a "blob" in my rectum which just started a couple of weeks ago and has been pretty consistent. I also have had anxiety, nervousness and irritability and lots of insomnia---especially if I consume sugar. I itch all over all of the time and run to urinate constantly. I've had some nausea on and off. My vision can get blurry sometimes. No blood in anything and no fever. If I consume milk, I will "dump my colon" within 1 hour of that consumption. My temps are always low---around 97.5 and I have had leukocytes in my urine without any bacteria present.

Eight months ago, I was diagnosed with diverticulitis but I am not certain this is a correct diagnosis. I get vast improvements when I leave off sugar, dairy and gluten...but also when I leave off most grains, including corn and rice and also red meat. Has anyone on this website ever had these symptomns in conjunction to celiac???? I am trying to determine if I really have had diverticulitis or if this could be gluten/lactose problem. I did stay off gluten for two weeks and saw a vast improvement in my symptoms and then started back eating it and got worse and I don't dare drink a glass of milk because I know what will happen there! Any reponses would be appreciated.


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Bama, it sounds like you could have a problem with gluten for sure & should consider getting tested for celiac disease. Have you also tried eliminating soy from your diet? When you eliminate foods, do you do one at a time or lots of them? Then when you add them back in do you do 1 at a time for say a week before adding another?

MitziG Enthusiast

I shared some of your symptoms. The urinary issues- definitely. I was running to the bathroom 40-50 times a day- doctors kept treating for UTI but nothing helped. I also had the "fullness" in my rectum and a constant feeling of pressure in my pelvis. A urogynecologist dx me with a prolapsed bladder, uterus and rectocele, and I had surgery to repair it. After the surgery he told me that he wasn't sure that was the total cause of my symptoms, as once he got in there, the prolapse was more minor than he had thought. While the rectal pressure did go away after the repair, and I quit leaking urine, the constant urgency and frequency did NOT go away, and I developed chronic pelvic pain. A hysterosalpinogram showed severe interstitial cystitis. I was also dx with celiac about the same time. My doctor gave me a list of foods to avoid to ease the IC symptoms and also said a gluten free diet helped a lot of people. He was correct. The IC is completely under control as long as I avoid any trace of gluten or casein. Other foods do not seem to aggravate it, but every person is different. Your left side pain could be related to IC, as it causes pelvic pain in varying locations and severity.

If I missed this in your post, I apologize, but have you had celiac testing? It would be worthwhile to have it done. It is important to keep eating gluten until all testing is done though, or you will likely get a false negative. The tests to do identify every celiac, but catches about 70% of them. The tests do not identify gluten intolerance. After testing, definitely try a strict gluten free, casein free diet. A lot of people get relief from their bladder issues after doing so!

alabama girl Newbie

Bama, it sounds like you could have a problem with gluten for sure & should consider getting tested for celiac disease. Have you also tried eliminating soy from your diet? When you eliminate foods, do you do one at a time or lots of them? Then when you add them back in do you do 1 at a time for say a week before adding another?

No, I've been off gluten/lactose for a couple of weeks and then I added back gluten to see what would happen and I got "worse". I don't dare drink milk because I will "dump my whole colon" within an hour of that and the only soy I am on is in my multivitamin. I think I need to get stricter with warding off all gluten/lactose for a longer period of time and see what happens.

alabama girl Newbie

I shared some of your symptoms. The urinary issues- definitely. I was running to the bathroom 40-50 times a day- doctors kept treating for UTI but nothing helped. I also had the "fullness" in my rectum and a constant feeling of pressure in my pelvis. A urogynecologist dx me with a prolapsed bladder, uterus and rectocele, and I had surgery to repair it. After the surgery he told me that he wasn't sure that was the total cause of my symptoms, as once he got in there, the prolapse was more minor than he had thought. While the rectal pressure did go away after the repair, and I quit leaking urine, the constant urgency and frequency did NOT go away, and I developed chronic pelvic pain. A hysterosalpinogram showed severe interstitial cystitis. I was also dx with celiac about the same time. My doctor gave me a list of foods to avoid to ease the IC symptoms and also said a gluten free diet helped a lot of people. He was correct. The IC is completely under control as long as I avoid any trace of gluten or casein. Other foods do not seem to aggravate it, but every person is different. Your left side pain could be related to IC, as it causes pelvic pain in varying locations and severity.

If I missed this in your post, I apologize, but have you had celiac testing? It would be worthwhile to have it done. It is important to keep eating gluten until all testing is done though, or you will likely get a false negative. The tests to do identify every celiac, but catches about 70% of them. The tests do not identify gluten intolerance. After testing, definitely try a strict gluten free, casein free diet. A lot of people get relief from their bladder issues after doing so!

No, I haven't been test for anything yet. I have wondered about a rectocele but I have so many other symptoms going on that really point to some kind of allergic/histamine type reaction, but it is all so confusing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748

    Gail Brown
    Newest Member
    Gail Brown
    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.