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

2-Year-Old Just Diagnosed


bennett'smom

Recommended Posts

bennett'smom Newbie

My 2-year-old son was recently tested (after failure to thrive, speech delays, and other symptoms) and his bloodwork came back with "positive antibodies." His pedi referred us to a Celiac Center at our children's hospital, but told us that my son has not been officially diagnosed. I am holding out a little hope that he may not have it, but after some Internet research, it's looking like he almost certainly does have Celiac. His bloodwork is as follows:

IgA: 40 (negative)

IgG: 38.8 (positive)

EMA Titer: 1:40 (positive)

From what I have read, a positive EMA titer (no matter how low the number) is almost certainly celiac. Is this true? My son can't get an appointment with the GI specialist until next week, and I am trying to prepare myself as best I can. I am ready to tackle this challenge if I need to, but if there is a possibility of him not actually having it, I would rather wait to order books, start buying gluten-free, telling friends & family, etc.

Any advice on the bloodwork is greatly appreciated! And thank you so much for everything I have learned already from this forum!!


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

What were the ranges for those numbers? Did he have a total IGA ran as well? Or were those tests the only ones done?

bennett'smom Newbie

I'm having a hard time deciphering the test results, but it looks like it might be:

Total IgA: 40. (Range 21-150)

Deamidated Ab, IgA: <10 (range <20)

Deamidated Ab, IgG: 38.8 (range <20)

Emdomysial ABTiter: 1:40

His AST level was also high, at 49 (with a range of 15-35).

Thanks!

nvsmom Community Regular

His EMA titre was the same as mine.... After thirty odd years undiagnosed. :( Both tests have a specificity of over 90% so i think that a diagnosis is fairly certain with those two positive tests. The DGP IgG is very sensitive and specific... I think it is time to start buying gluten-free.

Best wishes. I hope the transition goes well.

mommida Enthusiast

Sounds like your son will have an endoscopy with biopsy for gold standard diagnoses. Keep his normal diet. Until after the scope.

Takala Enthusiast

Look at the bright side.  You will put him on a gluten free diet, and after a short adjustment period figuring out the details, your son will have a "normal" life, other than he won't be eating gluten.  You will have stopped the auto immune reaction going on inside of him early, before there was a lot of damage.   He should gain weight and height, his speech should improve, he won't have severe learning disabilities, etc. If one had to select an auto immune disease, this is the one to get, because the symptoms can be controlled by diet change.  

 

They (researchers) are also working on various medical treatments that may be available within a decade.  But the diet is fairly easy, compared to a lifetime of sickness.

 

Now, two things.  One, in a small percentage of children, there is not enough damage yet in the intestines, so they do not have a positive celiac biopsy which goes along with the positive celiac bloodwork.  Some doctors will then announce that There Is No Celiac Diagnosis Here, and try to toss you into "undiagnosed land."   Save your kid and put him on that gluten free diet anyway, and note how he reacts to it.  Does he thrive ?  (he should, with those blood tests....)  Then petition for them to acknowledge this.  There is this whole cottage industry of docs trying to convince people that living on pharma medications while eating the food which causes antibodies and gut damage is a normal behavior.  It isn't. 

 

Second, those common genes for celiac are carried by about 30% of the population.  And your child got them from somebody, so you may as well get yourself and any other first degree relatives tested, while you're at it.  And you may get surprised when and if you start mentioning this to friends and acquaintances, because you probably know a few celiacs or gluten intolerants already, and don't realize it.  I ran into another person last week who asked "are you... ?" and I said "yup!" and she said "oh, cool, I mean ... oh, not cool, uh, I mean I totally get this, me too !" and we both ended up laughing really hard.   :lol:

Cara in Boston Enthusiast

Definitely take this as good news.  My guy was not diagnosed until age 5.  He went to Early Intervention for speech delays, had enough "odd" tendencies (arm flapping, little eye contact, easily agitated, etc.) that he was tested for ASD every single year - but never quite fit the description.  After a sudden behavior change (tantrums, meltdowns, etc.) we took him to the doctor and she tested him for celiac.  

 

Once he was gluten free it was like we had a brand new kid.  Happy, calm, confident, focused, chatty.  He shot up three inches within weeks.  Slept better, ate better, everything was better. 

 

The diet seems overwhelming at first, but once you figure out what you like, it is pretty easy.  Our whole house is gluten free and everyone eats a healthier diet because of it.

 

cara


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,180
    • Most Online (within 30 mins)
      7,748

    boy-wonder
    Newest Member
    boy-wonder
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
    • Scott Adams
      Around 9% of celiacs cannot tolerate any oats, even gluten-free oats. It might be worth eliminating them for a few months, then get re-tested.
    • thejayland10
      I only eat certifed gluten-free products but a lot of which are processed. Could there be trace gluten in those or is that very unlikely? 
    • Scott Adams
      For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes (you may want to avoid oats):    
×
×
  • Create New...