Help!! Testing 3 1/2 year old

[butterfly80]

Hi!  My almost 4 yr old son has recently been tested for celiac.  He is very small for his age and as I review his growth he has dropped in percentile over the past 2 years from 40-30th down to 5-10th percentile.  He's always have had stomach "issues" alternating constipation and diarrhea and frequent Bms.  He has also had canker sores several times and he has eczema.  

He had a celiac panel and his labs were all within normal except Ttg Igg.  It was "7" and the normal range was between (0-5).  I dont know what his CBC was but I plan to find out this week.

Could this mean he is celiac or gluten intolerant?  When I "Google" the labs it means a "weak positive" but I'm confused as to whether another lab needs to be positive or not.  Are there other labs that need to coordinate with Ttg igg to be considered positive?

His doctor said his labs were "normal" but my gut tells me there is something going on.  I've been attempting to keep him gluten free to see if there is a difference.  

Any advice would be great!!  Thanks!

 

 

 

[cyclinglady]

Welcome!  

Was he tested for an IgA deficiency?  As part of the celiac panel, did he get the DGP IgA and DGP IgG tests?  One positive on the celiac blood panel requires further investigation.  I personally had only one positive and was classified as "mildly positive".  My biopsies revealed moderate to severe small intestinal damage.  

If you think something is off, then trust your instincts.  Get a second opinion.  Keep your son on gluten until all testing is complete.  Being off for as little as two weeks can cause false positives.

Why not just go gluten free?  The diet is difficult.  He'll need protection when he goes to school (e.g 504 plan) in order to keep him safe in the classroom (PlayDough contains gluten!)

Please do some more research.  The University of Chicago has a great website.  Dr. Murray and Dr. Fansano have excellent celiac videos and books.  Watch out for quacks!

Anyway, would love to hear exactly what was on his panel!  

 

[butterfly80]

Thanks for the reply..... Below are his exact labs that were drawn.  I actually did take him off gluten and we are on week two minus a couple slip ups.  We are moving and switching pediatricians in  few months and definitely plan to follow up with a second opinion.  I'm unsure if I should keep him on gluten or take him off gluten for a month or so to see how he does.  How quickly might we see results?  It's so hard to tell.  He did eat three cookies and then the next day complain of a stomach ache and have diarrhea.  Coincidence? Or could that be a result of gluten?  

**let me know if there is trouble reading labs and reference values.  I just copied and pasted.

 

Tsh

 

Test Low Normal High Reference Range Units Tsh   2.280   0.700-5.970 uIU/mL

 

C-Reactive Protein, Quant

 

Test Low Normal High Reference Range Units C-Reactive Protein, Quant   <0.1   0.0-4.9

 

Celiac Disease Comprehensive

 

Test Low Normal High Reference Range Units Deamidated Gliadin Abs, Iga   1   0-19 units Deamidated Gliadin Abs, Igg   3   0-19 units T-Transglutaminase (Ttg) Iga   <2   0-3   T-Transglutaminase (Ttg) Igg     7 0-5 U/mL Endomysial Antibody Iga   Negative   Negative   Immunoglobulin A, Qn, Serum   67   21-111 mg/dL

 

 

[cyclinglady]

 

Thanks for the reply..... Below are his exact labs that were drawn.  I actually did take him off gluten and we are on week two minus a couple slip ups.  We are moving and switching pediatricians in  few months and definitely plan to follow up with a second opinion.  I'm unsure if I should keep him on gluten or take him off gluten for a month or so to see how he does.  How quickly might we see results?  It's so hard to tell.  He did eat three cookies and then the next day complain of a stomach ache and have diarrhea.  Coincidence? Or could that be a result of gluten?  

**let me know if there is trouble reading labs and reference values.  I just copied and pasted.

 

Tsh

 

Test Low Normal High Reference Range Units Tsh   2.280   0.700-5.970 uIU/mL

 

C-Reactive Protein, Quant

 

Test Low Normal High Reference Range Units C-Reactive Protein, Quant   <0.1   0.0-4.9

 

Celiac Disease Comprehensive

 

Test Low Normal High Reference Range Units Deamidated Gliadin Abs, Iga   1   0-19 units Deamidated Gliadin Abs, Igg   3   0-19 units T-Transglutaminase (Ttg) Iga   <2   0-3   T-Transglutaminase (Ttg) Igg     7 0-5 U/mL Endomysial Antibody Iga   Negative   Negative   Immunoglobulin A, Qn, Serum   67   21-111 mg/dL

 

 

First,  I am not a doctor.  It looks like your Ped ran the complete panel.  It appears that your son is not IGA deficient, so when talking about Celiac Disease (celiac disease) , it means that the IgA tests are working.  But that slight positive on the TTG IgG could be a false positive.  Read up about it here:

Open Original Shared Link

Open Original Shared Link

 I would get an extra opinion (I have done that many times even if I have to go outside my insurance). (I think you are going to do that).    If you want him to be retested for celiac disease, then he needs to be on gluten.  If you ask for a genetic test it could rule out celiac disease for life.   You can be on or off gluten for that test.  But remember, this excludes celiac disease only (does not diagnose) as 40% of the general population carries the celiac disease genes but on a tiny percent goes on to actually develop celiac disease.  

You asked about going gluten free.  I would wait until after that second consult and the rest of the blood work he had done.  For someone with celiac disease it can take a year or two to feel better -- I kid you not!  Kids are supposed to heal faster, but that can be off set by falling off the gluten free diet wagon.  Maintaining a true gluten-free diet is really hard.  So, a month might not reveal anything.....or it might.  He could be reacting to anything in the cookie (if processed, just look at the crap they put in them).   Slip ups?  For a celiac, one slip could mean three months of triggering an autoimmune response!  That happened to me!  Three months being ill after being accidentally glutened.  Remember, gluten sets off an autoimmune response like lupus or MS.  The response can last for days, weeks or months!  The only difference is that gluten is the trigger.  Lupus or MS?  Science does not know!   Talk to your doctor and keep researching.  

You might research food allergies or intolerances since he has eczema.   There are many things besides celiac disease that can contribute to malabsorption.    The CBC and hopefully, glucose panel might reveal more.  

One more thing.  I come from a family of little people.  My own kid was in the 5% range for weight for the first three years of her life.  Once she got to preschool and was exposed to junk food, she jumped to 15%.  Now, at 15, she's at 50%.  How's your son in height, head circumference?  On track?  Kids grow and stall at weird rates.  If that did not happen in your family, talk to your son's father's family.  You might be surprised.

 

[Gemini]

Your son is very young and it is extremely difficult most times to diagnose a young child.  Many do not develop enough damage to trip a blood test for conclusive results until more time has gone by and more damage occurs....which you want to try and avoid.  I would definitely get a second opinion and maybe even schedule an endo.
If those come back inconclusive, then I would do a strict dietary trial to see if his symptoms get better or go away.  Include the gene testing also for purposes of ruling the genetics for it out.

What caught my attention were his symptoms.  Those are very specific to Celiac, or can be.  Mouth sores, abdominal complaints and skin rashes.  I had canker sores as a kid and stomach issues but no one was looking for Celiac back then and there were no blood tests. So....I ended up going to the age of 46 before I was diagnosed with Celiac, not to mention the 3 other AI diseases I acquired along the way. That should not happen to anyone.

If his symptoms go away or improve greatly, then document this and take it back to a doctor for his record. The diet is not hard to do but it is not convenient. I would say a dietary trial as a last resort is important because undiagnosed Celiac can really take it's toll on people and diagnosing or ruling it out in kids can be especially challenging.