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

Confusing Lab Results

roshimaximom

Recommended Posts

roshimaximom Newbie
roshimaximom
Posted

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

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

Celiac.com Sponsor (A8-M):


roshimaximom Newbie
roshimaximom
Posted
  • Author

talking to myself a little, but in case someone else reads this later with a similar question, the Ped GI Nurse Practitioner called and said yeah, its a very strong positive for celiac and we need to biopsy, and I decided to go for it, they're calling to schedule within 24 hours.

Hi All,

I've been reading here a long time but not posting. Very quick background on us: my 3 year old son has had a myriad of health issues since he was tiny and had his first celiac tests a year and a half ago. At that time he had a positive genetic screen (I am not sure which) and he had low IgA (14) so the other test wasn't valid, but didn't show active celiac. He has been having increasing diarrhea and tiredness lately so I convinced (hard to do for some reason) our pedi to re-do his celiac panel last week. He got:

his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

Tallforagirl Rookie
Tallforagirl
Posted
...his tTG Ab, IgA is 31, with a positive being over 8

his total IgA is 40 with the normal reference range being 24 to 121

his Gliadin Ab IgA is 3 with the positive being over 17.

We're going to be referred to a pediatric GI doc (he has seen them once before actually).

Thoughts? I guess if he's going to have a biopsy, I should *not* take him off wheat yet, right? I guess my confusion is how can his tTG be in the "moderate to high" celiac range when his Gliadin is low? I appreciate the opinions of those who know more than me ;)

Thank you!

Larissa and Macky

P.S. Will be reading about experiences doing biopsies on 3 year olds. I admit to not looking forward to it, assuming that is where we're headed.

The tTG is the one that counts as far as diagnostic accuracy, and being positive it seems there's a good chance it's celiac disease.

The endoscopy and biopsy is a very straightforward and quick procedure, as it's performed under sedation. He won't feel a thing.

happygirl Collaborator
happygirl
Posted

The reason that one may be positive and one negative (or variations thereof) is that none of the tests are perfect, and they do not correlate 1:1. If that were the case, then they would only need to run one test - but none of the tests are perfect.

Do not go gluten free until all testing is completed.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

The biopsy has been the "gold standard" of diagnosis since the 1960's--but nowadays, the blood tests available are far, far more accurate ind informative than what was available 50 years ago!

Most doctors would consider your child's blood work to be a definitive diagnosis of celiac. Now, it's possible that there might be something else that your doctor wants to look for--but he can look for it later if a gluten-free diet doesn't eliminate symptoms.

An endoscopy/biopsy IS one of the less intrusive surgeries--not like open-heart surgery, for example. Yet, it DOES carry major risks--infection, reaction to sedation, puncture, etc. These risks are obviously greater in a small child.

If it were my child, I would try the NON-invasive option (the gluten-free diet) first, and only opt for an endoscopy/biopsy if after, say a couple of months, I saw little or no improvement in symptoms. And I DO have a child who has been through open-heart surgery.

I think it's great that your doctor ordered--and correctly interpreted --the blood tests for celiac. But my experience, and the experience of many here, has led me to believe that the only reason that the biopsy is still being touted by many doctors as the "gold standard" of diagnosis is that they get a lot of money from it. Obviously, they don't make a penny from a diet change.

Whatever you decide, best of luck, and please keep us posted.

Oh--and until those intestinal issues are resolved, I would delay any further vaccinations, and do some research on www.nvic.org. With those intestinal issues, your little one is at risk for serious vaccine reactions.

roshimaximom Newbie
roshimaximom
Posted
  • Author

Thanks for the feedback, everyone. I've struggled with the risk of the biopsy. My son has not been under general anaesthesia before but my daughter has - she has hypomineralized molars and had to have dental surgery (yes, she is getting a celiac panel done this week). the GI wants us to do a biopsy on Feb 17, and to stay on gluten until then. I am mixed on it. I feel like well, he has it, I know he has it. But, I've worked with this GI nurse practitioner a lot (again for his sister), and I think she has his best interest at heart, and based this and on other stuff in our family (history of structural anomaly in digestive tract that is genetic, and a lab he had that shows low pancreatic enzymes) I am leaning toward doing the scope.

We are already limited vaccinators - but I will keep this in mind. I a not planning any new vaccines for him in 2009.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,164
    • Most Online (within 30 mins)
      7,748
    VGL
    Newest Member
    VGL
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...