3 Yr Old - Endoscopy

[peppyking]

I posted last week about my three year old, who had high #s on all blood tests:

Tissue transglutaminase ab, iga >100 (> or + 4 antibody detected)

Immunoglobulin A 126 (reference range 24-121 m/g)

Gliadin (deamidated) AB (IGA) >100 (> or = 20 units antibody detected)

endomysial antibody screen (IGA) positive

Endomysial antibody titer 1:160 (ref range less than 1:5)

 

The GI said with #s that high, the biopsy would likely confirm. Today, at the endoscopy, he said that everything looked normally visually and we would have to wait for the biopsy. Either way, she needs to be off gluten.

 

Is it common for little ones to have high numbers and no visible damage but still a positive biopsy? I would prefer a definitive diagnosis, and he seems to foliow the positive biopsy for diagnosis school of thought.

[cyclinglady]

You have to wait for the biopsy results. I had no visible damage, but the biopsy showed a Marsh Stage IIIB (moderate to severe damage).

Hang in there, Mom!

Be sure to read our Newbie 101 thread under the coping section of this forum. It contains helpful tips and how to avoid cross contamination.

[StephanieL]

Things can look very normal but be positive.  

 

It isn't uncommon to have high numbers and an inconclusive biopsy.  There are several thoughts on where to go from there.  We were told to either keep him on gluten till the biopsy came back positive or take him off.  Looking back at everything we have been through, I would not have taken him off till there was a biopsy + because even the "best of the best" doesn't consider it a positive in kids till there is a positive biopsy.

 

Did you do the genetic test?

[greenbeanie]

My daughter (age 4 at the time) was positive on all three blood tests they ran (tTG-IgA and both DGP tests), and she had a positive biopsy but the damage wasn't visible during the endoscopy itself. And it was only the biopsies of her duodenal bulb that showed damaged villi. Her doctor was very surprised that the biopsies didn't show more damage throughout, given her high blood tests and tons of symptoms. But it was enough to confirm the diagnosis. When they told me everything looked normal on the day of the endoscopy, I worried that we'd be left with no clear diagnosis - but we did get one once the biopsies came back.

Hang in there! The waiting is so hard, but it will be over soon.

[peppyking]

We didn't do the genetic tests. Should we still do that regardless of the results?

I did take her off gluten already. GI said it was fine a few days before the biopsy, as her symptoms (diarrhea, vomiting, pain) were worsening and she could not eat anything. I do not see how I could keep her on gluten now. She would end up in a hospital. So, either way, the treatment is the same, it would just be easier for her in the future for it to be definitive. I knew little of celiac a few weeks ago, and was surprised by the ambiguity so many have to live with.

Thanks for the encouragement. I have been pouring over the forum and learning tons. I have read Newbie 101 and should probably reread daily to let it all sink in.

For now, I will try to just sit tight waiting for results, and focus my energy on converting my home to gluten-free.

[cyclinglady]

If the results are positive, there is no need to do the genetic test.

[mommida]

I wouldn't do the genetic testing. (Things have probably changed from 10 years ago, but it was not 99% accurate ~ as any blood test has at least a 30% human error rate.  It is not considered as part of a "gold standard" diagnoses.  It may not be covered by insurance.  If the genetic test does not come back positive for the known Celiac genes some people my not consider you a "true Celiac" and not take it seriously that a gluten free diet needs to be followed.

[StephanieL]

  It is not considered as part of a "gold standard" diagnoses.

 

The genetics isn't diagnostic at all.  It shows the predisposition to developing Celiac.  If the blood is + but the biopsy is - then the genetics would give an indication of "Well you don't have active Celiac but you have the antibodies, S&S AND the genetics so yeah, it's more likely than not Celiac." but still not 100% for sure.  It is another piece to the puzzle is all. 

 

Like Cyclinglady said, if the biopsy is + then yeah, no need!

[SMRI]

With blood work numbers that high, she probably doesn't even need the biopsy.  The genetic tests are moot at this point.  She has Celiac, no question, so she has some genetic markers for it.  Everyone else in the family should be tested as well.  Just know that even if the biopsy comes back "negative" she is still Celiac.  If they did not take enough samples, they could have missed the damage.  To hit 100+ on all of the tests is conclusive.

[StephanieL]

Just know that even if the biopsy comes back "negative" she is still Celiac. 

 

You do know that many many in the community don't ascribe to that though.  Especially in kids.  The genetics aren't dx but give more credibility to a dx in the absence of a + biopsy.   

 

Again, doesn't matter if the biopsy is +.

 

Any word on when they'll have that ready?  The waiting really stinks

[mommida]

I would take the high positive numbers on the blood work to diagnose Celiac and the endoscopy to get a baseline of how much damage to heal or rule out any other illness.

[ArPlasma]

Hang in there! My son's blood results were comparable to your daughter and the doctor said the same thing to us after the biopsy "everything looked normal" but when the results came back I was told that there was a lot of villii damage. It was pretty stressful for me to hear too but we went gluten free right after the biopsy and got confirmation a couple of weeks later that indeed he had Celiac disease when the lab results came in.

[psawyer]

Blood testing in young children is known to be much less accurate than in adults. False results are common. I would think that the biopsy will probably be positive, but that will be the foundation of the diagnosis, not the screening blood tests.