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:
    Help Celiac.com:
    eNewsletter
    Donate

Thoughts On My Son's Most Recent Labs?


megsybeth

Recommended Posts

megsybeth Enthusiast

So I've posted quite a few times about my celiac diagnosis process and that of my son, who's four. But just for background, he's had failure to thrive, markedly small stature since he was one. I thought he was tested for celiac because it was discussed but looking back see all they did was stool testing for fats. In addition to slow growth, he has motor and speech delays, weak (stained) teeth, dark circles under the eyes, pale skin and starting in August has had terrible diarrhea frequently (constantly until we took him off gluten following endoscopy). He's very clumsy (and so am I).

I started reading about celiac and also realized I have it, which blood tests confirm across the board (deciding on the endoscopy still). I saw a celiac specialist who confirmed it and have my boys scheduled to see a pediatric celiac specialist at the end of the month. His GI swears he doesn't have it based on biopsies (more than six of duodendum). But she also doesn't really offer any other idea of the problem (I think she actually thinks I'm making up the diarrhea to a degree).

After some nagging she did run another celiac panel for me (the first she ran through quest was negative, but not the full panel).

Here are his results from Prometheus:

Notes: "Results may support a diagnosis of celiac", "Serological markers for celiac disease detected" (I'm no expert but I think I can interperet this part...)

DGP lgG .5 EU/mL: negative: referenc range <4.9EU/mL

DGP lgA 15.0 EU/mL: positive: reference range <6.1 EU/mL

TTG lgA .4 U/mL: negative; reference range <10.3 U/mL

EMA lgA: negative: Reference range "negative"

Total lgA: 294 mg/dl (3-13 years 41-395 mg)

Genetics: DQ2/other low risk gene, relative risk low

I think it looks like a duck, quacks like a duck...No matter what I'm doing gluten free indefinitly with him. I would like to have a clearer diagnosis for people who will ask about it (meaning people who might be feeding my son and think I'm crazy) but I believe this kid has celiac.

Also, we saw the GI two weeks ago today, went gluten free about 12 days ago, following endoscopy. According to her nurse he's grown 3/4" in that time. Guess it was the Halloween candy?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Positive DGP with obvious symptoms and a duck for a Mom - I'd say you've got a duckling with a great Mom!

I was only weakly positive at 43 with total villous atrophy - my teen sons had different symptoms for years, but both tested negative upon my diagnosis. They were older so each removed gluten at different times and each has had symptom resolution - had they decided to wait until they tested clearly celiac - they would have likely ended up as sick as myself and my eldest daughter.

The tests are far from perfect.

Keep up the great work and watch him grow :)

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,460
    • Most Online (within 30 mins)
      7,748

    BrittanyH
    Newest Member
    BrittanyH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • B1rdL0ver
    • shadycharacter
      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
×
×
  • Create New...