4 Year Old Celiac Panel Test Results - Help Understanding

[NHMom1016]

My 4 year old recently had a celiac panel blood test done due to his ferritin not going up.

These are the results I was given:

IGA – 123 – Not High

 

Gliadin IGA – 179.62 – Super High – Positive

 

Gliadin IGG – 55.03 – High – Positive

 

TTG IGA - <300 – Positive

 

TTG IGG - <300 - Positive

 

I was told the last 4 are specific to celiac disease.

 

Does anyone have the ranges for each test?  I was given these over the phone so I do not have.  We have an appt coming up with the GI,

so I am trying to understand these results as best I can before I go so I am prepared with my questions.

 

Is it likely that my child has celiac disease with these results?  Could he just have an intolerance?

 

Will they want to scope him?  Can these results mean something else?

 

Any information is greatly appreciated

 

Thank you so much!

[kareng]

Different labs could use different units of measurement.  But " high positive"  " super high"  - sounds like Celiac to me.  When the tests are slightly positive, they can be from other things.  They may want to scope him to make sure there are no other problems and see how bad the damage is.

[ravenwoodglass]

Those are some really high results. As Karen said the doctor may want to do an endoscopy  but they may diagnose without one with results that high.  If you do think you will want to have them do an endoscopy do be sure to keep him eating gluten until that is done. Then you can get him gluten free. Do check out the Newbie 101 thread at the top of the Coping section for some good info on what you need to do to kepp him safe. You should also consider getting other family members tested even if they don't have tummy issues as celiac has many different symptoms. This can be very important for children and teens since celiac can affect mood and learning.

Hope you see good results quickly with the diet but it can take some time to heal.

[ironictruth]

Those are high. Wow. Do you live in NH?

[NHMom1016]

On ‎5‎/‎7‎/‎2017 at 7:15 PM, ironictruth said:

Those are high. Wow. Do you live in NH?

Yes, we are in NH. 

 

[NHMom1016]

On ‎5‎/‎7‎/‎2017 at 2:52 PM, ravenwoodglass said:

Those are some really high results. As Karen said the doctor may want to do an endoscopy  but they may diagnose without one with results that high.  If you do think you will want to have them do an endoscopy do be sure to keep him eating gluten until that is done. Then you can get him gluten free. Do check out the Newbie 101 thread at the top of the Coping section for some good info on what you need to do to kepp him safe. You should also consider getting other family members tested even if they don't have tummy issues as celiac has many different symptoms. This can be very important for children and teens since celiac can affect mood and learning.

Hope you see good results quickly with the diet but it can take some time to heal.

Thank you for your reply!!  We went to the GI and he strongly thinks it is Celiac Disease based on the high positive test results but wants to do the biopsy to make diagnosis.  I don't want to put my son through this if we can do a gluten free diet and re- test him in a few moths to see if it helps.   I was told twice now that doing a biopsy is the gold standard of testing for celiac disease but I keep reading that this is now being debated?  Thank you again for responding  

[CeliacMommaX2]

Here's our story:  2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac.  We were convinced to put them both through a biopsy after having positive labs.  Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed.  Our 3 year old's biopsy only showed a little damage, but not enough to diagnose.  Shortly after, we had a new GI doctor who actually knew celiac disease and diagnosed our 3 year old as well because he had elevated TTG and EMA which went to zero after starting a gluten-free diet.  There was nothing else that could have explained the elevated labs...  He was either too young to have had much damage done or they biopsied an area that was not damaged (yet).

I believe there is new research that is saying the biopsy is not necessary to diagnose children with elevated celiac labs.  However, after your son is put on a gluten-free diet and heals, there is no way to assess what damage is/was there at a baseline upon diagnosis.  We have been struggling to get improved labs on our daughter for 2 years now and are sort of grateful to have a biopsy when she was diagnosed, so we can know if she's healing should we choose to re-biopsy.

Good luck with your decision!

 

[ironictruth]

2 hours ago, NHMom1016 said:

Yes, we are in NH. 

 

Mass General in Boston has a pediatric celiac institute. 

[Victoria5289]

On 5/7/2017 at 1:47 PM, NHMom1016 said:

My 4 year old recently had a celiac panel blood test done due to his ferritin not going up.

These are the results I was given:

IGA – 123 – Not High

 

Gliadin IGA – 179.62 – Super High – Positive

 

Gliadin IGG – 55.03 – High – Positive

 

TTG IGA - <300 – Positive

 

TTG IGG - <300 - Positive

 

I was told the last 4 are specific to celiac disease.

 

Does anyone have the ranges for each test?  I was given these over the phone so I do not have.  We have an appt coming up with the GI,

so I am trying to understand these results as best I can before I go so I am prepared with my questions.

 

Is it likely that my child has celiac disease with these results?  Could he just have an intolerance?

 

Will they want to scope him?  Can these results mean something else?

 

Any information is greatly appreciated

 

Thank you so much!

Yea he as celiac to me too 

[NHMom1016]

On ‎5‎/‎10‎/‎2017 at 3:44 PM, CeliacMommaX2 said:

Here's our story:  2 years ago, our 3 and 4 1/2 year olds (at the time) were diagnosed with celiac.  We were convinced to put them both through a biopsy after having positive labs.  Our 4 year old's small intestine was clearly and significantly damaged and she was quickly diagnosed.  Our 3 year old's biopsy only showed a little damage, but not enough to diagnose.  Shortly after, we had a new GI doctor who actually knew celiac disease and diagnosed our 3 year old as well because he had elevated TTG and EMA which went to zero after starting a gluten-free diet.  There was nothing else that could have explained the elevated labs...  He was either too young to have had much damage done or they biopsied an area that was not damaged (yet).

I believe there is new research that is saying the biopsy is not necessary to diagnose children with elevated celiac labs.  However, after your son is put on a gluten-free diet and heals, there is no way to assess what damage is/was there at a baseline upon diagnosis.  We have been struggling to get improved labs on our daughter for 2 years now and are sort of grateful to have a biopsy when she was diagnosed, so we can know if she's healing should we choose to re-biopsy.

Good luck with your decision!

 

Thank you for your post!  I'm still trying to decide on the biopsy.  I am currently trying to find a doctor who will diagnose on the blood tests.  We just had his blood re-tested because his results were very high before and it was mentioned that it "could" be a false positive?  Waiting on the new results now.

[alioubba]

Wow - those are some really high numbers. Something definitely has to be going on. It will be interesting to see if the numbers are still high.

My  7 year old has one positive celiac test - the TTG IGA and it's just barely positive (20-24 is weak positive and over 25 is positive - she is 27).  Her GI appt isn't til September but I hope the doctor will re-run the bloodwork and then if it's still positive, we will do the endoscopy. I am tempted to run her bloodwork sooner because September is a long wait.

I understand that some doctors will diagnose children without endoscopy if you meet 4 out of 5 criteria:

1. The presence of signs and symptoms compatible with celiac disease.
2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.