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

Completely Confused About My Toddler's Labs And Symptoms-Scoping In 1 Week


kendall9

Recommended Posts

kendall9 Newbie

My 2.5 year old is in the process of being diagnosed with celiac.  I am so confused.

She has had recurrent frank blood in her stools off and on since she was about a year old.  We had a workup done with a pedi gi, who said she most likely had a milk protein intolerence that she would grow out of.  She was suffering from anemia at the time that resolved with iron supplementation.  He ran labs at that time for celiac to rule it out, and all came back normal.

 

3/7/12 reference ranges in parenthesis

Deamidated gliadin abs IgA 3 (0-19)

Deamidated gliadin abs IgG 11 (0-19)

t-Transglutaminase (tTG) IgA <2 (0-3)

t-Transglutaminase (tTG) IgG <2 (0-5)

Endomysial Antibody IgA-Negative (negative)

Immunoglobulin A, Qn Serum 52 (20-100)

 

Now, 3/28/13

tTg IgA >150 (<20)

Immunoglobulin A 113 (19-109)

 

Her Albumin, CBC and Auto sedimentation rate are all normal, but she is anemic again (previously resolved as of 9/12. 

 

She is getting a colonoscopy (originally to look for polyps as the source of the gi bleed), and endoscopy to rule out celiac, which now, with the labs back, looks more like to rule IN celiac. 

 

My daughter has been having blood in her stool daily since the begininng of the year, and the regular pedi kept blowing it off as a fissure.  When there was an increased amount of blood two weeks ago, I asked to be seen again by the gi pedi, who found these new results, including the bad anemia (Ferritin is less than 2 (11-307), and iron is less than 10 (35-180))  hematocrit is normal, hemoglobin is slightly low at 9.8 (10.5-13.5)

 

How can she have been negative a year ago and then double her values suddenly?  Can the elevated tTG be from anything other than celiac?  Wheat allergy? Intolerance?  I'm just totally confused.  Thanks.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

You might want to print these out and share with the doctor?

Open Original Shared Link

Young kids don't always make enough antibodies to show up in blood work. Looks like he is making enough now?

Open Original Shared Link

kendall9 Newbie

You might want to print these out and share with the doctor?

Open Original Shared Link

Young kids don't always make enough antibodies to show up in blood work. Looks like he is making enough now?

Open Original Shared Link

That makes sense about it not showing up a year ago, when she was only 18months old.  She didn't start eating solids until well after 6 months of age, and definitely no large quantities of gluten containing foods until more like a year.  Ok, that settles me a bit on that issue.   Thanks.  I'm still feeling totally lost about if I need to start accepting that she is most likely celiac.  Could anything else give a tTG off the charts?

kareng Grand Master

That makes sense about it not showing up a year ago, when she was only 18months old.  She didn't start eating solids until well after 6 months of age, and definitely no large quantities of gluten containing foods until more like a year.  Ok, that settles me a bit on that issue.   Thanks.  I'm still feeling totally lost about if I need to start accepting that she is most likely celiac.  Could anything else give a tTG off the charts?

I think Celiac is the preferable and most likely cause.

Open Original Shared Link

kendall9 Newbie

I think Celiac is the preferable and most likely cause.

Open Original Shared Link

Ok, that eases my mind a bit more again, thanks.  Next question.  :) If she isn't symptomatic in the typical ways of bloating, belly pain, diarrhea, etc... What happens once we go gluten free if she gets glutened?  Will she most likely show a reaction?  The only symptom she has is the anemia with blood in her stool- no growth or developmental issues.  No other apparent nutritional deficiencies. 

kareng Grand Master

Ok, that eases my mind a bit more again, thanks.  Next question.  :) If she isn't symptomatic in the typical ways of bloating, belly pain, diarrhea, etc... What happens once we go gluten free if she gets glutened?  Will she most likely show a reaction?  The only symptom she has is the anemia with blood in her stool- no growth or developmental issues.  No other apparent nutritional deficiencies. 

Who knows? It's different for everyone. I bet it will be different as she grows, too. It will be a " lovely" surprise. 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. - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    5. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,803
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.