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

Still waiting...

AnneMcM
 Share

Recommended Posts

AnneMcM Explorer
AnneMcM
Posted

Hi Still waiting for my urgent colonoscopy and endoscopy (since Jan). Still having problems and now have a new pain in the right side of my back, comes and goes. Toward lower rib cage. Any thoughts? Thanks

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Can I assume that you are eating gluten daily now? If so, these are common symptoms of gluten sensitivity or celiac disease, but of course they also could be something else, so be sure to talk to your doctor about your symptoms. 

If you are eating gluten for your tests, then you may want to ask your doctor if you can stop until a few weeks before your test, and here is the normal protocol:

 

AnneMcM Explorer
AnneMcM
Posted
  • Author

Many thanks Scott, this is helpful. . I am still eating gluten. Such a long waiting lists, been told I should get the tests in June. :(

Scott Adams Grand Master
Scott Adams
Posted

Let us know how it turns out. Unfortunately a negative test for celiac disease won't rule out non-celiac gluten sensitivity, which ~10x more people have than celiac disease...no test yet for NCGS.

knitty kitty Grand Master
knitty kitty
Posted

@AnneMcM,

You're almost to June!  Hang in there!  

I had pain on my right side up under my ribs.  Turned out it was my gallbladder.  Mention it to your doctor and the doctor doing the endoscopy.  They can check the gallbladder while you're under.  

A poorly functioning gallbladder is not unusual in Celiac Disease.  The gallbladder doesn't work so well when there's a thiamine deficiency.  

Thiamine is Vitamin B1.  Vitamin deficiencies are common in newly diagnosed Celiacs, so be sure to get checked for other nutritional deficiencies caused by malabsorption due to Celiac Disease.

Keep us posted on your progress!   We're all cheering you on! 

AnneMcM Explorer
AnneMcM
Posted
  • Author

Many thanks for your replies, I will keep you updated. 

  • 2 weeks later...
AnneMcM Explorer
AnneMcM
Posted
  • Author

Hi been told I'll get a colonoscopy and endoscopy 5th June, in a hospital about 70 miles from where I live. Delighted, as 'red flagged end of Jan. Going to stay in hotel day before as don't fancy travelling when fasting and taking laxatives. 😊 

Hopefully can rule out/in bowel or stomach issues. Just want to know what's causing the pain.

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Let us know how it turns out...good luck!

AnneMcM Explorer
AnneMcM
Posted
  • Author
On 5/24/2023 at 12:18 AM, Scott Adams said:

Let us know how it turns out...good luck!

Thanks Scot, will do. 

  • 2 weeks later...
AnneMcM Explorer
AnneMcM
Posted
  • Author

Hi Scott,

Just home from procedures OGD went well thankfully, nothing unusual, he took 4 biopsies from my duodenum. Results will be3 months!  I'm not expecting anything sinister.

The colonoscopy failed due to 'looping' in my colon, which couldn't be controlled by posture change or pressure. Referred for CT colon scan. 

Fabulous staff. 😊

Scott Adams Grand Master
Scott Adams
Posted

Three months for the results seems like a very long time. Oh well, you may be able to try out a gluten-free diet for a few month, but if they should want you to undergo more tests for celiac disease you would need to start eating it again 6-8 weeks before any blood tests.

AnneMcM Explorer
AnneMcM
Posted
  • Author

Yes, I was shocked. Our NHS is being run down by the government

 

  • 1 month later...
AnneMcM Explorer
AnneMcM
Posted
  • Author

Hi I've just been asked to go for blood tests on Thursday, at a local phlebotomy clinic.

I had an endoscopy done 6 weeks ago, biopsies taken (no results yet).

Last had bloods done 6 mths ago and was then referred for endoscopy and colonoscopy. 

Wondering why I have to get bloods done, when still waiting for biopsy results?

Thanks

Anne

Scott Adams Grand Master
Scott Adams
Posted

This is strange indeed...and have you been eating around 2 slices of wheat bread's worth of gluten for the last 6 weeks? If you've cut back on gluten, or have gone gluten-free, the blood test results may end up false negative. Normally the diagnosis goes one direction: blood tests > if positive endoscopy > if positive diagnosis. I would ask them why you need this again, and if you've been gluten-free or low gluten, then you should postpone it for 6 weeks and eat lots of gluten before the test.

AnneMcM Explorer
AnneMcM
Posted
  • Author
17 hours ago, Scott Adams said:

This is strange indeed...and have you been eating around 2 slices of wheat bread's worth of gluten for the last 6 weeks? If you've cut back on gluten, or have gone gluten-free, the blood test results may end up false negative. Normally the diagnosis goes one direction: blood tests > if positive endoscopy > if positive diagnosis. I would ask them why you need this again, and if you've been gluten-free or low gluten, then you should postpone it for 6 weeks and eat lots of gluten before the test.

Hi Scott

Thans for your reply.

I have been continuing to eat gluten. 

Went for the bloid tests and nurse said the doctor who had did my endoscopy had requested them. Range if different test samples including electrolytes and check for ceolic disease. My ITA?? blood result was 5.6 in Jan. (normal is 0-4).

Also told results would be known today. Have already tried to contact the endoscope doctor but he is a locum. 

Thanks.

Anne

 

 

Scott Adams Grand Master
Scott Adams
Posted

In case your biopsy is normal or inconclusive, 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.

AnneMcM Explorer
AnneMcM
Posted
  • Author

Many thanks Scott. I am hoping to hear something next week. 

 

Scott Adams Grand Master
Scott Adams
Posted

Let us know how things go for you.

AnneMcM Explorer
AnneMcM
Posted
  • Author

I will do Scott. Just wish I would know why I feel unwell so much. 

  • 1 month later...
AnneMcM Explorer
AnneMcM
Posted
  • Author

 

On 7/15/2023 at 1:24 PM, AnneMcM said:

I will do Scott. Just wish I would know why I feel unwell so much. 

Hi Scott

I just found out today that there is nothing abnormal in my biopsies or ct scan.

I have been feeling so unwell that last week (before I got results) I cut way back on gluten and feel much better. Not sure if it's a coincidence. 

I don't know what to do next!!

I cope better with knowledge.

Thanks 

Anne

Scott Adams Grand Master
Scott Adams
Posted

I would try a gluten-free diet for a few months.  If your symptoms go away on a gluten-free diet it would likely signal NCGS.

AnneMcM Explorer
AnneMcM
Posted
  • Author
14 hours ago, Scott Adams said:

I would try a gluten-free diet for a few months.  If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Thanks Scott. I must read up on NCGS. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,937
    • Most Online (within 30 mins)
      7,748
    Madonna Spinazola
    Newest Member
    Madonna Spinazola
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   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.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
×
×
  • Create New...