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My 6Yr Olds Celiac Panel - ? Borderline

The Horticulturalist

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The Horticulturalist Apprentice
The Horticulturalist
Posted

A little bit of background on me, for the last 18 months I have a post infectious IBS type illness, my celiac blood work was -ve. I had a colonoscopy early on, however the doctor only took biopsies of the large bowel which is pretty useless for diagnosing celiac, I thought that's what he was looking for but it looks like we had our wires crossed. I only got copies of the lab report for that this week to give to another gastroenterologist who is helping me now, I have a two week course of xifaxan that I'm about to start taking today.

I've been on a gluten free diet since then and so I feel like I've missed my window of opportunity for potentially diagnosing celiac. I do have HLA-DQB1 0302 and HLA-DQB1 0202.

I also have a paternal aunt and a first cousin (also on my fathers side of the family, she's the daughter of his other sister)with rheumatoid arthritis.

So anyway, given all that history I wanted the blood panel for my 6yr old who appears well, but is much smaller than his older brother was at the same age. He regularly has mild diarrhea, complains of 'sore tummy' and has headaches.

The results are as follows:

Immunoglobulin A 157 (range 87 - 474)

Tissue transglutaminase 4.9(range <4 negative,4-10 weak +ve,10 and above +ve.

The pediatrician says it's probably nothing to worry about,that's what the receptionist told me when she called this morning.He eats gluten every day, I'm the only gluten free person in the house.

So my questions are

1) Are there other blood tests that may shed some more light on this and what are they?

2) He has an allergy to tree nuts, could that skew the blood results?

3) should I pursue this further or do you think that his levels are low enough that I have nothing to worry about?

Thanks in advance!

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shadowicewolf Proficient
shadowicewolf
Posted

1. errr not that i'm aware of. You could try the diet and see how it goes.

2. No, it would not.

3. Persue it definently. You might have caught it "early" :)

seezee Explorer
seezee
Posted

1. I think there are 4 blood tests for celiac (Open Original Shared Link)

2. ?

3. I would pursue it. Celiac can cause really bad things like learning problems, neurological problems, growth problems, and bad teeth in kids. I also think a lot of doctors don't have current information and shouldn't give advice. There are a number of pediatric GI specialists who work mainly with celiac. Not sure where you live but you may want to look for one. I found it really helps to work with a doctor who really knows about this. I also find it puzzling that so many doctors pretend to. When my daughter's test was positive her pediatrician called me and told me that her test was abnormal and that she didn't know a whole lot about it since she had only seen a few cases in her practice, but she would write a referral for a specialist.

GottaSki Mentor
GottaSki
Posted

#3 - Pursue it.

ALL of my kids and grandkids had negative celiac panels. Mine was only marginally positive at 43 years old - turns out I had serious intestinal damage and celiac was diagnosed by biopsy.

Back to kids...they all had negative panels and ALL improved gluten-free. We chose to eliminate gluten as a test rather than push docs to endoscopy on them.

Good Luck to you!

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

#3 - Pursue it.

ALL of my kids and grandkids had negative celiac panels. Mine was only marginally positive at 43 years old - turns out I had serious intestinal damage and celiac was diagnosed by biopsy.

Back to kids...they all had negative panels and ALL improved gluten-free. We chose to eliminate gluten as a test rather than push docs to endoscopy on them.

Good Luck to you!

Thanks to everyone who replied. I am trying to find out online if his "mild positive" result would be considered significant by Drs who are more expert in celiac, but so far I'm not finding anything.

I am very reluctant to start a gluten free diet for him right now given his vague symptoms and the fact that it would rule out the chance for accurate diagnosis in the future.

mushroom Proficient
mushroom
Posted

The complete celiac testing panel is considered to be:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Of these tests, the new DGP is considered by some doctors, especially Dr. Rodney Ford (a pediatric specialist) to be the most accurate in testing children. I would suggest you try and get this test run.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

The complete celiac testing panel is considered to be:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Of these tests, the new DGP is considered by some doctors, especially Dr. Rodney Ford (a pediatric specialist) to be the most accurate in testing children. I would suggest you try and get this test run.

Mushroom, thank you.

My son just had the Iga and TTG only. I have been reading on the website for the University of Chicago Celiac Disease Center, they have a hotline and will try to call Monday to see if someone can help interpret the results.

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Skylark Collaborator
Skylark
Posted

Out of shroomie's list, I would specifically ask for anti-EMA IgA and anti-DGP IgG. EMA is very, very specific, an I completely agree that the DGP is looking like the most sensitive test out there.

Allergy to tree nuts will not skew his results and heck yes, you should pursue this!

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Out of shroomie's list, I would specifically ask for anti-EMA IgA and anti-DGP IgG. EMA is very, very specific, an I completely agree that the DGP is looking like the most sensitive test out there.

Allergy to tree nuts will not skew his results and heck yes, you should pursue this!

Thanks Skylark! I'm hoping that the Chicago place can answer my questions,I'll let you know what they say.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Got an email today from the Celiac Center at UofC, it reads as follows:

"I received Dr. Guandalini

Skylark Collaborator
Skylark
Posted

OMG they're looking at symptoms! Fabulous advice from them. If you're unsure about the biopsy locally maybe look at more bloodwork and go from there.

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

OMG they're looking at symptoms! Fabulous advice from them. If you're unsure about the biopsy locally maybe look at more bloodwork and go from there.

Very, very helpful people! The hotline there is really a wonderful service.

Anyway, I am seriously considering planning the long drive up there, it's about 11.5hrs from north Mississipi where we live. The lady I spoke to gave me her direct office number so I'll speak to her monday about other blood test and/or the genetic tests.

JoshB Apprentice
JoshB
Posted

Second the DGP test idea as the older tests are not supposed to be at all accurate in children (though I don't think DGP is supposed to be perfect either). His TtG certainly seems suspicious.

Also... your HLA type doesn't seem to put you at risk for celiac disease. You're (at least half) HLA DQ2.3 which is not a risk factor.

Open Original Shared Link

  • 3 weeks later...
The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Can you help me out with translating this list of blood tests please? In speaking to a Dr nearer to home, before they would consider an endoscopy they have requested that I ask my pediatrician to order this blood panel and the HLA DQ tests from LabCorp:

Deamidated Gliadin

Endomysial IgA Antibodies

Tissue Transglutaminase

Total IgA

I'm not sure what the 2nd one is, is that the EMA or something else? They asked for a repeat of the Ttg and the IGa as I previously had them done (through a different lab) with the old reference range.

Skylark Collaborator
Skylark
Posted

Yes, emdomysial is EMA. That's a good list of tests. Is your son still eating gluten for the tests to work?

The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Yes, emdomysial is EMA. That's a good list of tests. Is your son still eating gluten for the tests to work?

Yes, I have not modified his diet.

faithforlife Apprentice
faithforlife
Posted

Out of shroomie's list, I would specifically ask for anti-EMA IgA and anti-DGP IgG. EMA is very, very specific, an I completely agree that the DGP is looking like the most sensitive test out there.

Allergy to tree nuts will not skew his results and heck yes, you should pursue this!

I agree

  • 3 weeks later...
The Horticulturalist Apprentice
The Horticulturalist
Posted
  • Author

Yes, emdomysial is EMA. That's a good list of tests. Is your son still eating gluten for the tests to work?

Skylark and the rest of the forum, here is an update to the story above.

Short version, my son has long standing nut allergies, I decided to see an allergy Dr in a nearby town about it, really just for some advice.

While there I asked if he would repeat the Celiac panel and include EMA, DGP and repeat the others.Plus the genetic work.

He called my pediatrician who ordered the first lot (Ttg and IgA only - a weak +ve on the Ttg) and then he was very amenable to having his nurse order the bloodwork, he even got the book out with the order codes to make sure that they could get all the tests I wanted.

They sent them to Prometheus - is that regarded as a good lab, I figured it was? No reference range was given for the EMA, it just said "positive" under the results list and had "negative" under the reference range

Here are the results:

RESULTS REFERENCE RANGE

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG) 1.6EU/ml - <4.9EU/ml

Deamidated Gliadin Peptide Antibody IgA (DGP IgA) 2.6EU/ml - <2.6EU/ml

Anti-Human Tissue Tansglutaminase IgA ELISA (TTG IGA) 13.0U/ml + <10.3 U/ml

Anti-Endomysial IgA IFA (EMA) Positive +

Total Serum IGA by Nephelometry (TOTAL IgA) 173mg/dl

Celiac Risk Genes Detected:

DQ8 (HLA DQA1 *03 DQB1 *0302) and other non risk aleles

relative risk MODERATE

Still reeling a little from the this, trying to get through to UofChicago Celiac Hotline and speak to the lady there that helped me.

Folks, his symptoms were so mild to almost non existent that I really didn't think they would show up anything. Any ideas on the sharp jump in only a matter of weeks between the two Ttg tests? Do you think the lab makes a difference? He had been eating gluten all the time, perhaps some weeks less than others though.

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