Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Confused about test results


KikiSa
Go to solution Solved by Scott Adams,

Recommended Posts

KikiSa Newbie

Hello,

My child received a ‘weak positive result’ on a routine bloodwork for TTG Iga. The result was measured in U/ml. A repeat test a few months later (while waiting for endoscope) now shows high (but the result is in KIU/L). I’m told the lab ‘just changed the way they report’. I’m wondering if this is an error, or if anyone knows how to convert the units.


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



Celiac.com Sponsor (A8-M):



  • Solution
Scott Adams Grand Master

It's understandable to be concerned about the unit change between your child's test results. TTG-IgA can be reported in different units (U/mL or kIU/L), and some labs use a conversion where 1 U/mL equals approximately 1 kIU/L. However, since reference ranges and assay methods vary by lab, it's best to confirm with them directly. Ask the lab or your doctor to clarify whether the new result is truly higher or if it’s just a reporting difference. This will help avoid confusion before the endoscopy. Hope you get clear answers soon! Let us know.

KikiSa Newbie
21 hours ago, Scott Adams said:

It's understandable to be concerned about the unit change between your child's test results. TTG-IgA can be reported in different units (U/mL or kIU/L), and some labs use a conversion where 1 U/mL equals approximately 1 kIU/L. However, since reference ranges and assay methods vary by lab, it's best to confirm with them directly. Ask the lab or your doctor to clarify whether the new result is truly higher or if it’s just a reporting difference. This will help avoid confusion before the endoscopy. Hope you get clear answers soon! Let us know.

Thank you very much for your response Scott. Apparently the second TTG Iga test was ten times the normal. I’m just surprised that there can be such a huge difference between the test results. It concerns me also that the lab has just recently changed their reporting. There are not really many/ any symptoms anymore. I was suspicious about celiac several years ago, and had my child tested then (it was negative then), so we never thought further about it as the pediatrician continued to tell us his shorter stature must be genetic even though we are average height parents. Also I did not have as much knowledge at the time. I guess we will know more after the endoscopy. It pains me to think this may have been an issue for years. I worry now if we are getting false negatives for my other children also.

Scott Adams Grand Master

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.

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:

 

KikiSa Newbie

Yes, I did read about the bloodwork diagnosis option and was given the choice for further bloodwork or proceeding with endoscopy. At this point we would like a definitive answer as it will be a lifelong diagnosis and we realize we would have to go back on gluten if we ever wanted endoscopy in the future. I was reading an article from a GI specialist that was of the same opinion, but yes, difficult decision when it comes to your children.

Scott Adams Grand Master

Honestly, with a 10x or higher level on a TTG-IgA score, there is really no other explanation but celiac disease, at least in my humble opinion.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)

    2. - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

    3. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    4. - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    5. - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

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

    • Total Members
      134,192
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
×
×
  • Create New...