Son--weak positive...dr says inconclusive????

[lizdawnhs]

Hi, I’m new here and haven’t had a lot of time to browse the boards so I apologize if this is a common question. 

 

We’re trying to figure out what is wrong with my eight year old son.  These are his symptoms:

 

Chronic constipation and stomach upset

Acid reflux

Poor weight gain (though he has gotten taller)

Fatigue (or, just needs to stop and rest a lot…gets worn out easily)

(He also has viral induced asthma, not sure if that is connected or not)

 

His aunt and uncle have celiac and while my blood work just came back negative, I also don’t handle gluten well and have celiac type symptoms.

 

His prealbumin blood test came back low (normal is 20-40 mg/dL and he was 17 mg/dL).  Dr said that meant he was malnourished…we assume it is because of malabsorption because he has a good diet and eats well.

 

Here are his celiac test results:

 

Component                                                   Your Value             Standard Range

 

DEAMIDATED GLIADIN PEPTIDE ANTIBODY IGA     <5.2 CU     <20.0 CU

 

ENDOMYSIAL AB IGA                                  Negative               Negative

 

TRANSGLUTAMINASE IGA AB                 22.6 CU             <20.0 CU

 

IGA                                                              69 mg/dL             34-305 mg/dL

 

 

So, there is the picture.  When I saw the prealbumin and celiac test results online, in combination with his symptoms and family history, I thought we had found a diagnosis.  Everything seemed to point to celiac.  We were thinking maybe just adding a genetic test for one further confirmation, but even that didn’t seem really necessary. I mean, if we take him off gluten and he feels better, it seems that would really nail down the diagnosis. 

 

But when the pediatrician called she said the results are inconclusive and referred him to a GI specialist.  Very long wait and we’re supposed to keep him on gluten. Ugh. 

 

I’m confused, why isn’t that a diagnosis for celiac?  

Thanks, Liz

[kareng]

Slightly elevated blood test caused by other things.

 

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[lizdawnhs]

Thanks!  

So, if we went off gluten and his symptoms went away, would that be sufficient to rule out other things?  Or are there other things that can cause a positive Ttg that also respond to a gluten-free diet?  

[squirmingitch]

Are you in Canada or the UK? Or are you in the US? I ask because you talk about the long wait for the GI. Is your insurance with a PPO or can you go to any doc you choose?

I think he should now have the full celiac serum panel while you wait for the Gi appt.

This is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[lizdawnhs]

We are in the US, but there aren't many options around here.  Our wait is about two months, so not as bad as Canada...just feels long to us.  

We wouldn't mind going to a bigger city, just didn't understand why it was necessary.  I looked at the other diseases that can have a positive ttg result and he doesn't fit any of them (that I could find).  If going gluten-free helps him it seems like that would be celiac.  But, I am really new to this. :-)  

Good idea about the full celiac spectrum.  My dr only ordered two tests for me...something to look into for both of us!  

[squirmingitch]

It's best to get the full panel especially when one comes up with results like your son did. We have members who only test positive on the DgP and they are adults which is unusual because usually that's the one that only shows positive for kids. If you can get your Doc to order the missing pieces of the panel for your son than that would be a great step in the right direction. Also, yes, if you can get the full panel run for you as well.

I understand where you're coming from about eliminating gluten now but PLEASE, PLEASE don't! You REALLY need to get a dyed in the wool dx for your son at least and he needs to keep eating gluten until ALL testing is done. The gold standard is positive blood PLUS positive endoscopy. If he does have celiac then you will need that bonafied dx for him for school for a 504 plan and in future for college in order to protect him under the laws that apply. Otherwise, you're going to be fighting for his safe food forever. The other thing is that he's 8 now but what about years from now when he's older? He might begin to wonder without an official dx if he truly is celiac or not & get sloppy or cheat on the gluten-free diet.

It's truly best to just keep him eating gluten. Many who go off of gluten in the interim end up getting themselves caught between a rock & a hard spot because once celiacs go BACK to gluten eating they almost always have much stronger reactions and a great many of them get too ill to complete the "gluten challenge", thus they never get an official dx. 

[cyclinglady]

Hi!  The celiac blood tests are pretty good, but not perfect. . One positive on any one of them calls for a GI consult to really confirm a diagnosis.  The blood tests are really just for screening since doctors can not order an endoscopy for everyone  due to resource constraints, etc.  You do have a positive family history.  If your doctor is willing to provide you with a formal diagnosis after going gluten free for six months that might be an option.  The other option is to keep him on gluten until that GI consult.  I know that sounds bad, but going off and then doing a challenge later can be really hard.  You can call to see if there are any cancellations.  He needs the diagnosis to keep him safe in school (504 plan) and college.  Some adults and kids have no choice, and have to choose not to pursue a formal diagnosis for a variety of reasons.  If you can, I recommend (yeah, some stranger in the Internet who is not a doctor), a formal diagnosis.  

i test positive to ONLY the DGP Iga (rest of panel is negative) -- even on follow-up testing yet my biopsies revealed a Marsh Stage IIIB which is moderate to severe damage.  I got my diagnosis (4/2013).  My hubby went gluten free per the poor advice of my allergist and his GP 15 years ago.   Well, the good news is that it worked.  Was a real struggle the first year.  A lot of doubting, cheating, etc.  Now, new doctors do not believe him, but they believe me.  Lab tests rarely lie!  He tell you that I get way more support from family and friends.  

i would push for the GI visit.  Two months will fly by (thankfully it is summer).  

in the end, it is up to you (and plenty of research).  I wish him well!

 

[lizdawnhs]

I like the idea of asking the dr if she would be willing to diagnose on the combination of genetics, symptoms, blood work, and a gluten-free symptom reversal.  Going to check into that before making a final decision.  Thank you SO much!!!  :-D  

[Jmg]

On 6/17/2016 at 2:52 AM, lizdawnhs said:

I like the idea of asking the dr if she would be willing to diagnose on the combination of genetics, symptoms, blood work, and a gluten-free symptom reversal.  Going to check into that before making a final decision.  Thank you SO much!!!  :-D  

I completely understand your eagerness to get a diagnosis and move on to getting your son well,, but are you sure that this route will provide the certainty you, your son and potentially your son's future physicians will need?  You may, depending on the doctor, be able to get a celiac diagnosis but I've seen several accounts on here of people who were diagnosed by a single blood test or genetics years ago and have subsequently been told that their diagnosis is uncertain. So when they subsequently present for whatever symptom the Doctor asks them to gluten challenge to confirm celiac, because they need to definitively exclude if they're going to diagnose other issues. I know that for me, going back onto gluten after removing it was very unpleasant, worse than the initial effects.

If you can in your son's case push through and get the gold standard confirmation from a dedicated GI, that could serve you and your son well in the future. AS much as anything it gives him the 100% no doubts medical validation that the gluten-free diet is essential. When it comes to college or being out in the world with all the gluten filled temptations to stray, that level of certainty may be all that keeps him on the diet. Otherwise he could be on this forum in 15 years saying that a Dr in his childhood diagnosed celiac but it was never really confirmed and he now has the occasional beer and pizza and feels ok...

Good luck to you both in whatever you decide  

[squirmingitch]

4 hours ago, Jmg said:

I completely understand your eagerness to get a diagnosis and move on to getting your son well,, but are you sure that this route will provide the certainty you, your son and potentially your son's future physicians will need?  You may, depending on the doctor, be able to get a celiac diagnosis but I've seen several accounts on here of people who were diagnosed by a single blood test or genetics years ago and have subsequently been told that their diagnosis is uncertain. So when they subsequently present for whatever symptom the Doctor asks them to gluten challenge to confirm celiac, because they need to definitively exclude if they're going to diagnose other issues. I know that for me, going back onto gluten after removing it was very unpleasant, worse than the initial effects.

If you can in your son's case push through and get the gold standard confirmation from a dedicated GI, that could serve you and your son well in the future. AS much as anything it gives him the 100% no doubts medical validation that the gluten-free diet is essential. When it comes to college or being out in the world with all the gluten filled temptations to stray, that level of certainty may be all that keeps him on the diet. Otherwise he could be on this forum in 15 years saying that a Dr in his childhood diagnosed celiac but it was never really confirmed and he now has the occasional beer and pizza and feels ok...

Good luck to you both in whatever you decide  

This is such a perfect post. 

[nmlove]

Hi there,

You've had such wonderful responses! I just wanted to support the "keep on gluten and see the GI doc first" point of view. Having had to see a variety of specialists for a number of years, two months is quite decent and such a small window in the larger picture of life. 

My third child was diagnosed with a "weak positive" (by weak her TTG was 60-something). The GI doc diagnosed celiac from family history (me, my mom, her two brothers). She was eating gluten alongside my husband about once a week at the time. The doc said if it had been another child, she would want to run other tests to rule out other things. We never discussed it because it was pretty obvious in our situation.

I have regretted a handful of times not having an upper endoscopy done on my second son (he was diagnosed via bloodwork - extremely positive, in the 800s - almost immediately after his older brother's positive bloodwork and upper endoscopy). He's doing great now so I'm not worried but in those first few years, I wondered if there was something else going on.

Also, going off gluten, as you seem pretty aware, leads to a rabbit hole of problems sometimes. Other food intolerances pop up and it's definitely hard to tell what's what sometimes.

Last thing, your son is 8. You're in control quite a bit now, but think down the road. That diagnosis will help him to adhere to the diet, move doc to doc, help with school, keep you and him aware of possible problems (like my son who was recently diagnosed with type 1 diabetes, a comorbid autoimmune disease with celiac), etc.

Best of luck!