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Celiac Blood Testing

celiac blood test panel high b-12

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#1 dkaj

 
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Posted 09 July 2014 - 11:57 AM

Hi All,

I am new to the forum.  I have 2 children with GI issues and I myself have had IBS type symptoms most my life.   We've had blood work celiac panels run on both of my children and told they were negative with no need for genetic testing.  My dd also had an endoscopy done at Mayo Clinic in Rochester and from all those results, I see they did not do any separate biopsies for celiac.  When I talked to the nurse about it later because dd was still having symptoms, I was told that since there was no sign of inflammation or damage, they did not need to do the biospies for celiac.   Not sure what I think about that.  My gut tells me they can not see that well to know for sure, but wanted the groups advice on all of this.     OK, so my dd's GI history is MSPI as a baby, then reflux and regurgitation of foods possibly related to histamine intolerances, and also possible fructose malabsorption. She's also has constipation issues since she was a baby.   Recently diagnosed with SIBO at age 8 but since the methane gasses were higher toward the end of the breath test, doc thought it was being caused by her constipation.    Her vitamin B-12 was over 1500.   No exact number was given, just over 1500.     DD has aversion to almost all fruits and veggies.   She'll eat strawberries, green beans, some lettuce and cooked carrots.   Sometimes some applesauce or fresh apples but we are pealing the skins to make easier to digest. .  She also has texture issues but is very smart, top of her class.   Was not growing at one time around age 2, but now is growing and gaining weight but on the lower end of the curve for her age but looks healthy.    So  here are my dd's blood test results.  She was almost 7 years at the time.   Immunoglobulin A Serum =101  ( range is 33-200);

Gliadin Peptide Antibody, IgA  = 2  (range 0-19); tTG Antibody, IgA  =4  (range 0-19).      Also, my son's Celiac results were almost identical to my daughters and the same testing panel was done on him.   Both tests were completed by ARUP labs out of Salt Lake City, UT.      

   Any advise on these test results would be appreciated.   Specific questions being do you all think ARUP's panel is complete or a good one.  Do those blood test results look questionable at all for possible celiac disease or do they looked strongly negative.   Just trying to put this to rest as FP doc keeps telling us to avoid the wheat, but don't want to take her off it, if more testing should be completed.      


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#2 GottaSki

 
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Posted 09 July 2014 - 12:16 PM

First thought.

Have you been properly tested for celiac disease?

Other thoughts:

It is difficult sometimes kids take longer to test positive and do agree that samples should have been taken and sent to the lab during the endoscopy...sadly not many doctors want to move forward with celiac diagnosis once blood is negative.

Did either child have a DGP-IgG?
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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 dkaj

 
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Posted 09 July 2014 - 12:37 PM

Thanks Gottaski,  No, I have not been tested myself for Celiac.    I've never had an endoscopy.  Years ago I had a sigmoidoscopy, BE series and upper GI Barium study but that was it. I was told all was fine with these tests and  I was told I had IBS with no advice. Just avoid gassy foods.       Neither kids have had the DGP-IgG test done.   Do you know which lab runs that test in the US.   All the hospitals in our city use ARUP out of Salt Lake City.    Not sure if ARUP does that test.    It seems like the GI docs in our town don't do celiac biospies very often.  I've just heard stories of people having endoscopies and no biopsies for celiac being done.    That's why we went to Mayo with my daughter.  They are supposed to be the best and then they didn't even do the biopsies.     What are your thoughts on the results I listed??   I don't even know what the Immuglobulin A test is for?   Is that to show if a person if IGG or IGA deficient???   No one explained any of the blood test results to me.   Just that the kids were negative.   Don't get to talk to doctor about results.   The nurses always just call back and say they are negative and then they don't know the specifics about the tests.   Very frustrating....  


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#4 GottaSki

 
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Posted 09 July 2014 - 01:10 PM

Oh goodness.

Yes, the Immuglobulin A is often referred to as "Total Serum IgA" and is a control test to see if one is IgA deficient. If deficient then some docs will order the IgG based celiac antibody tests.

Here's one problem....some, especially young kids can be positive on one of any antibody tests or all of them. I always recommend kids with obvious symptoms &/or family history of celiac disease be tested with the complete celiac antibody panel.

I'll add the complete list when I get back to my laptop....on mobile version just now.

Hang in there...keep reading.

I would suggest you get a complete antibody panel yourself. Your primary can order it.
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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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