Testing in young children

[SRI]

My daughter is 12 months old and was referred to a pediatric GI to rule out celiacs due to her slow weight gain. She was born at the 99th percentile for both height and weight and has consistently decreased to now being in the 3rd percentile for height and off the charts for weight. She has suffered with constipation for the past 4 months and has always had horrible gas.

the GI ordered the following bloodwork

anti-tissue transglutaminase, IGA

IGA

CBC

Hepatatic function panel

Now that I’m looking for information on this it seems that the blood tests are unreliable in children so young, but I can’t really find why.  I did read that it may because they have not had enough time to build up antibodies, but if that is the case would her total IGA be low? 

In other words if her total IGA is normal can I conclude that the results (if negative) are valid, or is it only with a low IGA that the negative results are suspicious.

And if the results are negative should I push for a full panel with Deamidated Gliadin IGA and IGG included as well? And should I be suspect that a pediatric GI wouldn’t run a full panel on an Baby, or is it normal to wait for results of the first tests before ordering more? 

Thanks for your help!

Meghan

 

 

[cyclinglady]

Hi!

Push for the full celiac panel (it is just one blood draw).  The TTG test does not catch all infants and toddlers.  They are so little that they might not  have had enough gluten exposure to develop antibodies.   Ask for the DGP tests!  

Open Original Shared Link

This trusted Preemie doctor has celiac disease and  children.  She has researched this topic:

http://www.thepatientceliac.com/tag/deamidated-gliadin-peptide/

i am one of the weird adults who only test positive to the DGP and I am biopsy confirmed.  I like the entire panel!  

 

[tessa25]

Yes, I would call the docs office and ask them to add on TTG IGG, DGP IGA , DGP IGG and EMA.

 

[CMPalmer]

Hi.  My son had an atypical presentation of Celiac.  He never had lower GI symptoms.  He grew well until he was about 12 1/2 years old.  Then, he started to have acid reflux (which led to asthma flares) and recurrent sinus infections (which required significant antibiotics).  His growth and weight gain nearly stopped.  The doctors focussed on his airway issues and did not seem to be concerned about his  growth deceleration, even though he'd just begun his pubertal growth spurt.  It took six years to get a definitive diagnosis.  Fortunately, he was a tall kid, so he is now average height. 

I was able to get him to the Growth Center at CHOP at age 15.  The endocrinologist performed a battery of blood tests.  Everything was normal except he had detectable TTG, although below the magic threshold.  When I asked about it, I was told that my son could not have Celiac because the level was not high enough.  We were not referred to the gastroenterology department.

I convinced my son to try a gluten free diet with the promise that he might start growing.  We all at gluten free at home.   In his senior year of high school, he started to cheat when he was away from home.  He developed episcleritis in both eyes that the ophthalmologist told us was autoimmune in nature.  I convinced my husband's GP (our son's pediatrician was not helpful) to redo the Celiac screen.  This time my son's TTG was very high (probably because we took gluten out of his diet and then added it back in).  Anti-endomysial antibody was also high.  His diagnosis was confirmed by endoscopic biopsy a few weeks later.

The anti-TTG test has a sensitivity of 98%, which means it will not detect about 2% of people with active Celiac disease.  And, of course, the sensitivity depends on the lab performing the tests...not all labs are equal.  The anti-endomysial antibody is very sensitive for Celiac, but a lab will not perform the test unless the anti-TTG is high...above the magic threshold.  

Endoscopic biopsy is considered the gold standard for diagnosis; however, the accuracy of the results depends on the surgeon performing the biopsy and the lab evaluating.  If the surgeon doesn't biopsy the right areas, active disease can be missed.  A little bit of damage can have a dramatic impact, especially in a baby.

I strongly recommend that your daughter have the genetic screen.  There are four HLA genes known to increase the risk of Celiac.  Two combinations are most common (HLA DQ 2.5 and HLA DQ 8).  Some people have all four genes.  Some people are double DQ 2.5 or double DQ 8.  If your daughter doesn't have at least one of these gene combinations, she probably doesn't have Celiac (I never want to say never).  You will probably be told that 30%-40% of the population in the US (European) carries these genes.  That may be true, but eliminating the possibility of Celiac allows you to look elsewhere for answers.

Our entire family had the genetic test.  My son inherited the DQ 2.5 genes (over 90% of Celiac patients have this combination) from his father.  There was no known history of Celiac disease in my husband's family, although there were many people with gastrointestinal issues on both sides in my husband's generation and my children's generation.  For many years, my husband had what would be considered typical Celiac symptoms without the weight loss.  He thought he was lactose intolerant.  He was tested a couple times, and his antibodies were consistently negative; but he is doing much better on a gluten free diet.  Truly, I wonder how many people with non-Celiac gluten sensitivity carry the Celiac genes.

Your daughter's symptoms are very alarming.  I urge you to get to a major children's hospital if you can.  Push for answers and don't be intimidated (I speak from experience).  Something is causing her growth deceleration.  Don't stop until you have an answer.  I wish you well.

[nela]

Hi,

We have similar symptoms with our almost 2 year old - and they persisted since he was a baby. Our celiac panel came back negative, but since he really does look like he has celiac, the dr is gonna do HLA test end of August (it cannot be done in our city, so we need to first get all paperwork in order to get refund for going somewhere else).  

The chances are slim for us, but it is worth doing. Reasons for FTT are numerous... You should do the normal panel first and if it comes back negative then re-evaluate. When we first did the panel he was less then 12 months, and we ruled out celiac at the time, but could not figure out what was going on in the months that followed. Just lost the time. Now trying gluten free, as I cannot stand to wait any longer. It pains me to see him smaller than 1 year olds  not to mention GI symptoms that must hurt, or the frustration at every single meal. 

Good luck!

[SRI]

On 7/27/2018 at 3:48 PM, cyclinglady said:

Hi!

Push for the full celiac panel (it is just one blood draw).  The TTG test does not catch all infants and toddlers.  They are so little that they might not  have had enough gluten exposure to develop antibodies.   Ask for the DGP tests!  

Open Original Shared Link

This trusted Preemie doctor has celiac disease and  children.  She has researched this topic:

http://www.thepatientceliac.com/tag/deamidated-gliadin-peptide/

i am one of the weird adults who only test positive to the DGP and I am biopsy confirmed.  I like the entire panel!  

 

Hi,

I have an update. The test came back that she is partially IgA deficient. Her level was 14 with the normal range being 21-100. He said she was not anemic and the rest of the bloodwork came back normal, but that because of her low total IgA the celiac screen is invalid.

The GI said at our next visit (not for another 6 weeks) he will order more bloodwork for IGG levels. Is this the same as DGP? Or is DGP not accurate in IgA deficient individuals. 

I appreciate everyone’s help, I usually am able to understand and digest medical information easily and for some reason all of the various possible tests and results for Celiacs has really thrown me off and I feel completely lost. 

My husband has dealt with GI issues his whole life and is self diagnosed as lactose intolerant and he has been tested for so many things but never for Celiacs. I told him at his next physical he should request blood work. 

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

[cyclinglady]

The tests are EMA, DGP and TTG.  All three have both IgA and IgG versions, though the EMA IgG is rarely ordered even in those who are IgA deficient.  But...discuss with the GI.  

Get hubby tested.  Celiac disease is definitely genetic (proven).  His diagnosis could help many family members.  Let him know that he might get dairy back (I did).    That can be his motivation for testing besides helping your sweet baby!