Help interpreting son's blood work

[Booiegirl]

Hoping somebody can help me - I am confused.  I have celiac disease, as does my sister and nephew.  OUr house has been gluten free for 7 years so my children eat very little gluten (only outside the home at friends etc).  However, since Xmas my 13 year old son has been eating lunch at school more regularly so would have had been eating more gluten than he had previously (although still not every day etc.).  He also had a really hard winter with infections, sick, headaches, no energy, losing interest in his sports etc.  I thought maybe it was his age but then in the spring he told me he had been having some diarhea and bloating.  And all of a sudden his increased ingestion of gluten dawned on my so I started to wonder if he had celiac disease.  So from mid June until he had bloodwork the start of August I tried to ensure that he was eating gluten consistently and daily.  He definately would have bloating (my other kids said he looked pregnant!) and was tired, but it was inconsistent.  His blood work results are as follows:

EOS % high 4.9% (normal below 4%)

TTG high 19.5 (normal below 14) 

IgG normal 12.07 (normal 6.5-15.2)

IgA normal 1.76 (normal 0.95 - 3.59)

IgM normal 0.89 (normal 0.46-3.04)

Originally our family doctor called with TTG results, said positive for celiac and given family history amd his symptoms we both felt comfortable forgoing scope (due to lenght of time it would take to get - just don't want him to have to keep eating gluten if it is making him feel crappy).  However, when she called GI doctor he was reluctant to not do scope and prescribe lifelong gluten free diet for my son based on "weak positive" ttg.  Our doctor said she did explain family history and that our house had been gluten free but he wanted the IgG, IgA and IgM results (to see if weak positive was result of those - but those came back normal).  I suspect lower TTG levels are simply due to length of time that he has been ingesting gluten, but clearly I could be wrong!  (also in googling high EOS - one of causes "could be celiac" - could also be other things but of course I though that was interesting) So, my questions are:

1. I always understood that a positive for TTG is positive - am I correct in thinking the lower ttg level could be result of not having ingested gluten consistently for a very long period of time?

2.  What else could cause high TTG?

3.  How would you interpret blood work results?

Just don't know if I should have him go gluten free, or keep eating it while we wait on referral etc. Just I hate to see him feeling crappy if gluten is the cause, and it would be so easy to fix.  But also don't want to assume that is the case if it isn't!  Grr.  So confused!

 

Thanks for any help you are able to provide!

[tessa25]

A high TTG should lead to a gastroenterologist doing an endoscopy to verify a celiac diagnosis. Find a better gastroenterologist.

[cyclinglady]

 A TTG positive does warrant a a biopsy, but since your family has a strong celiac disease history, I can see why your GP would rather skip this step.  I also understand the GI’s position as well.  Not because of a lifelong restriction of gluten, but it is nice to have a firm diagnosis (for school/university) and a benchmark of damage for future follow-up testing.  The TTG can be elevated due to other illnesses.  Just because you are celiac does not mean he has it.  It could be something else like Crohn’s.  You could see if your GP can run the EMA and DGP IgA versions to help your case of avoiding the endoscopy.

It sounds like that endoscopy can not be done quickly (insurance or where you live).  Maybe call daily to see if there have been cancellations?   You might also  consider having your son go gluten free and then back on gluten two to four weeks prior to the endoscopy.  Do this next summer!  If he has celiac disease he is mostly going to be miserable.  

I hope it works out.  

 

Edited August 16, 2018 by cyclinglady

[frieze]

On 8/16/2018 at 12:11 PM, cyclinglady said:

 A TTG positive does warrant a a biopsy, but since your family has a strong celiac disease history, I can see why your GP would rather skip this step.  I also understand the GI’s position as well.  Not because of a lifelong restriction of gluten, but it is nice to have a firm diagnosis (for school/university) and a benchmark of damage for future follow-up testing.  The TTG can be elevated due to other illnesses.  Just because you are celiac does not mean he has it.  It could be something else like Crohn’s.  You could see if your GP can run the EMA and DGP IgA versions to help your case of avoiding the endoscopy.

It sounds like that endoscopy can not be done quickly (insurance or where you live).  Maybe call daily to see if there have been cancellations?   You might also  consider having your son go gluten free and then back on gluten two to four weeks prior to the endoscopy.  Do this next summer!  If he has celiac disease he is mostly going to be miserable.  

I hope it works out.  

 

i understand CL point, BUT,,, he is at an age were major growth should be expected, and you might not get that back if you keep him on gluten, even small amounts at school.  if he is a reasonably mature 13 year old i would have a sit down with him and explain the situation, perhaps he would elect to wait till he is older, and grown.

[cyclinglady]

6 hours ago, frieze said:

i understand CL point, BUT,,, he is at an age were major growth should be expected, and you might not get that back if you keep him on gluten, even small amounts at school.  if he is a reasonably mature 13 year old i would have a sit down with him and explain the situation, perhaps he would elect to wait till he is older, and grown.

Great advice!  It is so hard to determine the best course of action.     I worry about this very issue with my 17 year old who is due to be retested.