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Endo Results Please Advise!


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6 replies to this topic

#1 kpw31

 
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Posted 02 July 2013 - 08:52 AM

My daughter's biopsies all came back normal so the GI said they've ruled out celiac, the only blood test that was elevated was TTG-IGG, everything else in the full celiac panel was normal. 

 

Why the high IGG then?  I know this does not rule out gluten intolerance, should I still try her with a gluten free diet?  I hate to make a complete dietary change for a 5 year old if it's not necessary but I guess we won't know about an intolerance until we try.  They also said they'd like to do a gastric emptying study next so we're scheduled for that next week.  Any thoughts or advice would be very much appreciated. Thanks!


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#2 GottaSki

 
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Posted 02 July 2013 - 09:17 AM

What are her symptoms?

 

Does this GI have a lot of experience with Celiac Disease and Non Celiac Gluten Sensitivity -- sadly, not all GIs do.  I find it curious that he/she would completely rule out Celiac Disease with a positive antibody test if they have extensive experience with young children.

 

Be sure to ask for a written or electronic copy of both the pathology and procedural reports from the endoscopy along with any blood tests.  This data may become very important to you down the road.

 

And yes....if your child has any symptoms associated with Celiac Disease and a positive DGP IgG, then it is of great value to completely remove ALL gluten one the endoscopy is complete for at least 3-6 months to monitor symptoms.  There is no test for NCGS except elimination of gluten.

 

Good Luck to your family :)

 

PS...make sure to have the full celiac antibody panel run again after 3 months completely gluten free -- that positive DGP-IgG means your daughter is making antibodies to one of the peptides (Gliadin) that makes up the protein in Gluten.


Edited by GottaSki, 02 July 2013 - 09:22 AM.

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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 :)


#3 kpw31

 
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Posted 02 July 2013 - 10:46 AM

it wasn't DGP though, it was TTG which I can never find as much information on.

 

They're sending me copies of the endoscopy report too, I don't know if I should get a second opinion.  I feel pretty confident in my dr we're going to one of the top children's hospitals in the US for this. At the same time I know this is all fairly new so I have to think about it.


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#4 GottaSki

 
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Posted 02 July 2013 - 12:15 PM

Oops sorry tTG -- same advice -- remove gluten now that tests have been complete and re-test the full antibody panel at 3 months.


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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 :)


#5 kpw31

 
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Posted 02 July 2013 - 05:52 PM

I feel like I've asked this a million times but is there any other condition or issue, other than a gluten issue, that would cause a "positive" TTG IGG? (an infection, crohn's disease, etc).  I just feel like I can never get a clear cut answer and am so frustrated.


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#6 GottaSki

 
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Posted 02 July 2013 - 06:37 PM

Yes a temporary rise in Tissue Transglutaminase Antibodies - either IgA or IgG is possible.  The keys (in my opinion) would be:

 

Symptom history.

Other serological results.

Endoscopy results - both observation and pathology.

 

If you have no symptoms of Celiac Disease...simply wait and re-test in three months.

 

It has been quite some time since I have personally researched each of the tests in the panel...perhaps someone else can provide current papers to support other causes of a rise in the tTG.


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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 :)


#7 powerofpositivethinking

 
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Posted 03 July 2013 - 02:35 AM

here's a link about ttg from the Chicago Celiac Center:

 

http://www.curecelia...sent-in-my-diet

 

 

I feel like I've asked this a million times but is there any other condition or issue, other than a gluten issue, that would cause a "positive" TTG IGG? (an infection, crohn's disease, etc).  I just feel like I can never get a clear cut answer and am so frustrated.


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 





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