Help with daughters blood test results

[Aliciam07]

My daughter, almost 7 years old, recently had a lot of blood work done, her Dr is out of the office, but another Dr in the practice said everything looked normal. I'm waiting for her Dr to come back and see what she thinks. I'm concerned because there is one abnormal result and I can't find info to tell me if just that one test being abnormal means anything. The reason for the blood work is mainly because of her poor growth, though she does have some other symptoms.

IgA 133 mg/dl

Reference range 33-200

 

CRP <2.9  same as reference range

 

Gliadin Deamidated Peptide IgA .4

Reference range <=14.9

 

Gliadin deamidated peptide IgG 33.9

Reference range <=14.9

 

TTG IgA .5

Reference range <=14.9

 

TTG IgG <.8

Reference range <=14.9

 

[psawyer]

Even one positive can be diagnostic. This is one:  Gliadin deamidated peptide IgG 33.9. If unsure, a biopsy of the small intestine will provide definite confirmation.

There is a control test to validate the other ones, but I don't see it there. What is does is validate the others by checking on the overall antibody levels. But it is to detect possible false negatives. A positive is a positive.

I think your daughter has joined our club.

[Aliciam07]

Thank you for your reply, though it's not necessarily what I wanted to hear, it is what I was thinking. 

[cyclinglady]

Peter is correct.  You do have a positive so that warrants further investigation.  Here is a link supporting our comments:

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Does she have celiac disease?  You will never know for sure without an endoscopy.  Even then, there is a chance the biopsies are negative, but keep in mind that she might just be starting to develop celiac disease or that the damage was not captured (the small intestine is the size of a tennis court if spread out).  

Personally, I tested negative on all but the DGP IgA, yet I had moderate to severe intestinal damage.  The celiac blood tests are good, but they do not catch all celiacs,  some celiacs can even test negative to ALL the blood tests. Consider yourself fortunate that your doctor ordered several of the tests and not just the screening TTG IgA (very good, keeps cost down, but does not catch all).    The DGP is the preferred test in small children.  I do not know why it caught me because I am old,  but it did!  

Confusing, isn't it?  I wish there was an easier way to diagnose, but  we have to work with what we have available to us.  

[ravenwoodglass]

Welcome to the board. I agree with the previous posters that you are very likely looking at celiac. Please do keep her on gluten until all celiac related testing is finsihed. After that do give the diet a good strict try even if the biopsies are negative. Also keep in mind that celiac is genetic so it would be a good idea to screen others in the family even if they don't seem to have symptoms.

[Aliciam07]

Thanks everyone. I appreciate the answers. I'm waiting to hear back from her dr and then we will go from there. If the dr doesn't think the results show anything then I will get a second opinion thanks to everything that has been shared on here. I will make sure and not change her diet for now.  I am planning on getting tested myself, I have had suspicions since last summer that I could have it. I have a form of autoimmune arthritis, just unclear exactly what it is at this time. I  going to ask to be tested for celiac at my next appt though.

[ironictruth]

Run to the nearest celiac disease specialty center if you can. Especially with conflicting doc opinions. Where do you live? Honestly, I test positive to only the DGP and the newest research on its specificity is a mixed bag. My recent scope did not show "active" celiac disease but only a slight increase in IELs. 

 I am waiting for my post biopsy appointment with the Celiac specialist next month. But I've been through a couple of GI'S locally and honestly I  feel it was definitely worth going to a specialist. Especially when you have some positive blood work but a normal biopsy the doctors really go back and Forth on diagnosis and never really know for certain.  Unfortunately given the above I just said I probably still do not know for certain. Sigh. But I trust the specialist to be at the top of his game on the research  and at least I can feel confident and comfortable in what his opinion may be next month.

[Aliciam07]

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

[GFinDC]

Open Original Shared Link

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You can check with these groups to see if they recommend any doctors in Houston.

[Aliciam07]

Thank you so much for those links, I will check into it.

Her pediatrician told me this afternoon she is wanting to repeat the bloodwork since that one test was elevated. I'm relieved that her pediatrician didn't dismiss it like the other dr in the practice did.

[GFinDC]

Open Original Shared Link

You can also find lots of information on celiac at the University of Chicago celiac site.  One test they suggest is the anti EMA antibodies.  I don't see that one listed in her results.  Probably because it is more expensive to do.  So they may have skipped it.  The other test they usually do is the total serum IGA levels, which is used to prove that the person's immune system actually makes IgA antibodies.  Some people don't make IgA antibodies, so the IgA tests are useless in them.

It looks to me like she makes IgA though, if this is the serum IgA result.

IgA 133 mg/dl Reference range 33-200

There are also gene tests they can do.  The genes indicate the possibility of developing celiac disease, not the automatic presence of celiac disease.  About 30% of people in the USA have one of the genes for celiac disease, but only about 1% develop celiac disease.

Some of the celiac genes are associated with other autoimmune conditions besides celiac disease.  So there are lists of AI associated conditions with celiac disease.  Sometimes called related conditions.

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[TexasJen]

Texas children's hospital in the med center has a celiac center now.

 

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Good luck!

 

[Aliciam07]

That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.

[ironictruth]

You could possibly try calling the places in Texas and Chicago to see if they can refer you somewhere that does accept your insurance.

Oh good luck to you!

[Aliciam07]

We've done bloodwork again, not everything is back yet, but so far all except for that same one are normal. 

[cyclinglady]

Waiting for the EMA, I bet.  Keep advocating!

this is interesting.  If celiac disease is excluded, she might still have a gluten sensitivity.  There just is not specific test for that.

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[Aliciam07]

52 minutes ago, cyclinglady said:

Waiting for the EMA, I bet.  Keep advocating!

this is interesting.  If celiac disease is excluded, she might still have a gluten sensitivity.  There just is not specific test for that.

Open Original Shared Link

Interesting!! I'm going to share that with her dr. I'll have to look into the gluten sensitivity more myself, the main reason we started testing is due to poor growth. As I learned more, I've seen several symptoms that could be explained by celiac. I like feeling informed so I'll know what to talk to the dr about or ask about.

I think those are the results we are waiting for still, I couldn't remember the name.