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

Test Result Accuracy .. Please Help


Mady84

Recommended Posts

Mady84 Newbie

I am sorry I couldnt wait any longer I've been miserable for a year and even more after delivering my daughter 2 months back and I have been reading for hours online and getting different answers.

I have a lot of symptoms that looks like celiac ..

Lower abdomen bloating, gurgling and gas, tingling in my legs and arms, what feels like dizziness sometimes (which might be a lack of sleep too with the new baby well I don't really know where does all symptoms come from)

I had hpylori before and GERD later on and Zantac seemed to help.

I went to see a gastro 2 weeks after delivery because of stomach pain at night had an endoscopy and he saw some bile in my stomach and thought it caused it he took a biopsy too and said I was lactose intolerant! I am trying not to consume milk products since then and then my lower abdomen bloating started I went again and this time he tested me for celiac (no he did not take a biopsy for that before!)

I was tested for transglutaminase antibody IgA ant IgG with Normal results for both and no deficiency in the IgA with a 2.0 u/ml

However I have a friend with celiac disease who asked me to ask to be further tested because this test was not accurate for her (I am on a normal gluten containing diet)

My question is : is this test accurate ? Or should I keep on suspecting celiac and ask for more tests because now my dr is testing me for a stomach bug! Don't know which one thu I am so tired of going back and forth with 2 kids and a newborn to take care of!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

The tTg tests (often given for initial screening) are very accurate for MOST!  Like your friend, my ttg was negative and only one DGP was positive!  You could ask for the complete panel, or wait for the results of the other tests you took (e.g. parasites, bacterial overgrowth, etc).  Lactose intolerance is very real and a majority of people have it.  So, get off all dairy products for now!  How is your gallbladder? You might need a HIDA scan.  I had a non-functioning gallbladder, but no stones!  

 

Here's the list of all celiac tests:

 

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysila antibodies) 
  • AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
  • endoscopic biopsy - 6 or more samples taken

Source:  NVSMom, Forum Member

 

 

I know you are overwhelmed and I am so sorry!  Please do not give up!  There is a reason your gut is bothering you!  

Mady84 Newbie

The tTg tests (often given for initial screening) are very accurate for MOST!  Like your friend, my ttg was negative and only one DGP was positive!  You could ask for the complete panel, or wait for the results of the other tests you took (e.g. parasites, bacterial overgrowth, etc).  Lactose intolerance is very real and a majority of people have it.  So, get off all dairy products for now!  How is your gallbladder? You might need a HIDA scan.  I had a non-functioning gallbladder, but no stones!  

 

Here's the list of all celiac tests:

 

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysila antibodies) 
  • AGA IgA and AGA IgG ( antigliadin antibodies) - older and less reliable tests that have been replaced by the DHP tests
  • endoscopic biopsy - 6 or more samples taken
Source:  NVSMom, Forum Member

 

 

I know you are overwhelmed and I am so sorry!  Please do not give up!  There is a reason your gut is bothering you!

Thank you for your reply so I think I still have a chance of a false negative.

I had an ultrasound everything seemed normal gallbladder, kidney etc. but my Dr think there is an inflammation in my stomach, small intestine and colon. I think they are running the DGP test next along with testing for bugs but that would take a while and I feel that the stress of waiting is wasting all my energy.

cyclinglady Grand Master

I always had a normal ultrasound on my gallbladder.  That test primarily looks for stones.  A HIDA scan checks the functionality of the gallbladder which is a reservoir for bile (bile is created by the liver).    Bile is squeezed out when you eat something like french fries!  If your gallbladder works on and off or does not squeeze enough bile out to digest your french fries or bacon, then you are going to feel sick!  Mine reached a point where it had 0% functionality and then started to rot (infected).  I had emergency surgery while I was on a business trip.  But I suffered for over 25 years with it!  As did the rest of my family -- it is a family curse!  

 

Your doctor did see some bile in your stomach.  Your gallbladder could be squeezing too much releasing way more bile than you need to digest whatever you have eaten.  A good sign is that you feel okay in the morning, but after eating, you start feeling pain the rest of the day.  Worse, if a heavy/fat-filled meal is consumed.  My Dad lived for 30 days on Pepsi and Chicken broth due to the pain just before his surgery.  They thought he had cancer due to his rapid weight loss, but it was his gallbladder.  Yep, he's one of seven siblings and six had non-functioning gallbladders.  

 

I am not discounting a celiac diagnosis.  That is still on the table!  

Mady84 Newbie

I always had a normal ultrasound on my gallbladder.  That test primarily looks for stones.  A HIDA scan checks the functionality of the gallbladder which is a reservoir for bile (bile is created by the liver).    Bile is squeezed out when you eat something like french fries!  If your gallbladder works on and off or does not squeeze enough bile out to digest your french fries or bacon, then you are going to feel sick!  Mine reached a point where it had 0% functionality and then started to rot (infected).  I had emergency surgery while I was on a business trip.  But I suffered for over 25 years with it!  As did the rest of my family -- it is a family curse!  

 

Your doctor did see some bile in your stomach.  Your gallbladder could be squeezing too much releasing way more bile than you need to digest whatever you have eaten.  A good sign is that you feel okay in the morning, but after eating, you start feeling pain the rest of the day.  Worse, if a heavy/fat-filled meal is consumed.  My Dad lived for 30 days on Pepsi and Chicken broth due to the pain just before his surgery.  They thought he had cancer due to his rapid weight loss, but it was his gallbladder.  Yep, he's one of seven siblings and six had non-functioning gallbladders.  

 

I am not discounting a celiac diagnosis.  That is still on the table!

After the stomach pain stopped they told me it might have been temporary because i had a long labour and it might have settled after my organs went back to place because I've never had a problem with my gallbladder before or surgeries. But thanks a lot for your time and detailed reply I'll try to wait for my test results and then might ask them to look for that too

nvsmom Community Regular

The rates for false positives in those tests can be as high as 25% for the tTG IgA, and 60% for the tTG IgG.  Conversely, the tTG IGA has a sensitivity between 75 and 95%, so it does catch most celiacs, but not all.  The tTG IgG is not nearly as sensitive.

 

This is where I got my info:

tTG IgA info on pages 10-12:  Open Original Shared Link

 

tTG IgG info:  Open Original Shared Link

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. - cristiana replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Tazfromoz replied to Ginger38's topic in Related Issues & Disorders
      15

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

    4. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

    5. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

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

    • Total Members
      133,073
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your thoughtful contribution, @Tazfromoz. I live in the UK and the National Health Service funds free vaccines for people deemed to be at heightened risk.  I was pleasantly surprised to discover that as a coeliac in my 50s I was eligible for this vaccine, and didn't think twice when it was offered to me.  Soon after diagnosis I suffered mystery symptoms of burning nerve pain, following two separate dermatomes, and one GP said he felt that I had contracted shingles without the rash aka zoster sine herpete.  Of course, without the rash, it's a difficult diagnosis to prove, but looking back I think he was completely spot on.  It was miserable and lasted about a year, which I gather is quite typical. For UK coeliacs reading this, it is worth having a conversation with your GP if you haven't been vaccinated against shingles yet, if you are immunosuppressed or over 50. I have just googled this quickly - it is a helpful summary which I unashamedly took from AI, short for time as I am this morning!   My apologies. In the UK, coeliac patients aren't automatically eligible for the shingles jab unless they're severely immunosuppressed or over the general age for vaccination (currently 50+) but Coeliac UK recommends discussing the vaccine with a GP due to potential splenic dysfunction, which can increase risk, even if not routine for all coeliacs. Eligibility hinges on specific criteria like weakened immunity (chemo, certain meds) or age, with the non-live Shingrix vaccine offered in two doses to those deemed high-risk, often starting from age 18 for the immunocompromised.
    • Tazfromoz
      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
×
×
  • 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.