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Thoughts On My Son's Most Recent Labs?


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#1 megsybeth

 
megsybeth

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Posted 13 November 2012 - 01:34 PM

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?
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#2 GottaSki

 
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Posted 13 November 2012 - 02:19 PM

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 :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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