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

Gallbladder/ncgi


nifer731

Recommended Posts

nifer731 Newbie

I recently ended up in the ER twice with severe abdominal pain that wrapped around my right side into my back, they suspected my gallbaldder and did an ultrasound but it was negative for gallstones. I then went to have a nuclear HIDA scan and it came back that my gallbladder is not functioning at all! The doctor recommends removal and I am scheduled for surgery next Friday.

Then this past week I read an article in a health related magazine about a woman who had had a plethra of issues and was finally diagnosed with NCGI, Non Celiac Gluten Intolerance. So many of the issues that I have, no related to the gallbladder, are exactly the same as this womans. I have not been tested for celiacs disease, but am wondering if all this has played in a role in my gallbladder not functioning.

Some of my other symptoms:

IBS with constipation, bloating

PMS

Lack of energy

insomnia

Sound like NCGI???

Any info. is appreciated!!

Jen


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



Celiac.com Sponsor (A8-M):



Libbyanne Newbie
I recently ended up in the ER twice with severe abdominal pain that wrapped around my right side into my back, they suspected my gallbaldder and did an ultrasound but it was negative for gallstones. I then went to have a nuclear HIDA scan and it came back that my gallbladder is not functioning at all! The doctor recommends removal and I am scheduled for surgery next Friday.

Then this past week I read an article in a health related magazine about a woman who had had a plethra of issues and was finally diagnosed with NCGI, Non Celiac Gluten Intolerance. So many of the issues that I have, no related to the gallbladder, are exactly the same as this womans. I have not been tested for celiacs disease, but am wondering if all this has played in a role in my gallbladder not functioning.

Some of my other symptoms:

IBS with constipation, bloating

PMS

Lack of energy

insomnia

Sound like NCGI???

Any info. is appreciated!!

Jen

Jen - I want to give this advice but keep in mind I am no doctor and everyone's body is different so don't only take my word. If I were you (or if I could go back in time) I would do some more digging, get some more opinions before removing the gall bladder. I had mine taken out about a year and a half ago and now that I've recently found out (or at least am under the impression) that I have a Gluten Intolerance, I'm not sure the surgery was really necessary. On top of that my recovery was long and...umm not comfortable. I don't mean from the actual surgery, I went home the same day so I was fine with that part. It was for the next 3 months when almost everything I ate literally went straight through me. It was awful :( . Of course, everyone's reaction to this surgery is different - I kept going back to the doctors after surgery because I was sure something else was wrong and I was told a couple times that it could be a year before I was normal again...before my body was used to not having the extra bile to break down food. Ugh. I had an endoscopy afterward too but they saw nothing except acid buildup and so they prescribed an antacid (of course I had also been throwing up quite a bit so that would explain the acid...)

I've been meaning to call the hospital to get my results from the biopsy taken during the endoscopy and see if they tested me for Celiacs at that time (my blood tests were negative). Maybe you could start with the endoscopy. It's a pretty simple procedure. Again this is just my opinion. I remember the doctors making the surgery sound so harmless and very easy recovery. It wasn't until after that I found out what they were leaving out.

Good luck with whatever you decide. And feel free to ask me any questions!

Libbyanne Newbie
Jen - I want to give this advice but keep in mind I am no doctor and everyone's body is different so don't only take my word. If I were you (or if I could go back in time) I would do some more digging, get some more opinions before removing the gall bladder. I had mine taken out about a year and a half ago and now that I've recently found out (or at least am under the impression) that I have a Gluten Intolerance, I'm not sure the surgery was really necessary. On top of that my recovery was long and...umm not comfortable. I don't mean from the actual surgery, I went home the same day so I was fine with that part. It was for the next 3 months when almost everything I ate literally went straight through me. It was awful :( . Of course, everyone's reaction to this surgery is different - I kept going back to the doctors after surgery because I was sure something else was wrong and I was told a couple times that it could be a year before I was normal again...before my body was used to not having the extra bile to break down food. Ugh. I had an endoscopy afterward too but they saw nothing except acid buildup and so they prescribed an antacid (of course I had also been throwing up quite a bit so that would explain the acid...)

I've been meaning to call the hospital to get my results from the biopsy taken during the endoscopy and see if they tested me for Celiacs at that time (my blood tests were negative). Maybe you could start with the endoscopy. It's a pretty simple procedure. Again this is just my opinion. I remember the doctors making the surgery sound so harmless and very easy recovery. It wasn't until after that I found out what they were leaving out.

Good luck with whatever you decide. And feel free to ask me any questions!

Also, (I tried to edit my reply but I don't think it worked <_< ) I didn't have any stones either! Ultra sound was negative for stones but the HIDA scan showed my gall bladder was just functioning at a very low level. I had very sharp pains below my ribs (especially when I would laugh) I had been given every excuse from the doctors from the pain being because I wore an underwire bra to fibromyalgia. :unsure:

debmidge Rising Star

I had gallbladder out 8/07.

I had calcified stones on the interior lining of the gallbladder - maybe I passed one here and there, but they were not the prime problem.

My gallbladder was calcified and diseased and it had to be removed.

My symptoms were: pain wrapped around my right ribcage, right side ribcage sore to touch, indigestion, gas, bloating, diarrhea, intestinal pains, intermittent upper back pain on right side, sometimes on left side (refractory) occasional gallbladder "attack" if I ate fried food.

Had endoscopy last week, I am being treated now for gastritis as many of the above symptoms lasted even after the gallbladder was removed. I believe I have had this gastritis since 2007 and the gallbladder obscured it. I am on Nexium now and feeling somewhat better after 1 week on Nexium. I do not know if I have to take Nexium forever. I am also on 1/2 dose of Immodium and 1 Packet of Questran (to control bile salts in gut). Questran may be forever too. Too early to tell.

During endoscopy I was biopsied for H. Pylori and celiac disease- don't know test results yet.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.