Advice Needed Regarding My 10 Year Old Son.

[knackeredcow 0]

Hi All,

I am very concerned about my son. I have always suspected a gluten issue but he has been tested negative 2 times now. Once when he was 5 and the last time around 6 months ago.
As he is 10 I don't often see his stool but a few times recently he didn't flush so his Dad and I both noticed his stool was very pale, fluffy looking and looked like there was lots of undigested food. I think this must be the way it is most of the time.
He is small for his age and I am concerned there might be a problem that is effecting his growth but at the same time the males in the family aren't too big so this might just be the way he is.
I am thinking he should go completely gluten free for 2 weeks to see if there is any improvement. Would this be long enough?
Is there another problem that might be causing this that any of you know of?
I want to have as mich information to take to the GP as possible as they are usually very good at fobbing me off!

Thanks in advance
 

[nvsmom 334]

Welcome to the board.  I'm sorry your son hasn't been feeling well.

 

Only go gluten-free if you are satisfied that his testing is complete.  He must be eating gluten in the 2-3 months prior to (blood) testing for it to be accurate.  These are all of the celiac disease tests:

• tTG igA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - good for detecting early celiac disease , and for testing kids
• EMA IGA (endomysial antibodies) - similar to the tTG iGA but detects more advanced disease
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

None of those tests are perfect.  It is quite common for celiacs to be positive in only one or two tests yet negative in the rest - including the biopsy.  Most tests have a sensitivity around 75-85% so some celiacs do get missed.  If you run all the tests, your chances of having accurate tests increases.

 

This report has more info on the tests:  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

An article on how symptoms can't be relied upon in kids to diagnose celiac disease: http://pediatrics.aappublications.org/content/early/2014/01/07/peds.2012-3765.full.pdf

 

If you are satisfied testing is done, and is negative, then trying the gluten-free to check for non-celiac gluten intolerance (NCGI or NCGS) is a good idea.  You may need to give it more than two weeks though.  Generally, most people will notice a difference in post meal stomach aches and bloating within a few days, but other symptoms may take weeks or months to improve.  I was still noticing improvements at over one year gluten-free (but celiacs seem to recover a bit slower).  Keep a food and symptom journal to keep track of the changes.

 

Hypothyroidism can also affect digestion and slows growth. Check for TSH (should be about a 1), free T4 and free T3 (should be in the 50-75% range of the normal range), and TPO Ab.

 

Celiacs and those with NCGS can be low in nutrients that can affect his growth and life.  Check for levels of: A, D, B12, Ca, K, Mg, Fe, Zn, Cu, ferritin.

 

BTW, I am a celiac and I suspected a problem in a couple of my children.  They were tested but only with the TTG IgA (all that was available) and it was negative.  I made them gluten-free anyways and they improved quite a bit.  They have no dianosis of anything but they feel better... that's all that matters.

 

Best wishes.