3 year old celiac blood test

[Mags88]

Hi! I’ll try to keep this short and sweet. ? We are currently testing our 3 year old for celiac.  My main questions are about which tests were run and which are missing from the full celiac panel.  From what I understand, the full celiac panel is ttg iga, ttg igg, dgp iga, dgp igg, Ema, and total iga (to check for iga deficiency).

My son’s bloodwork came back and these were the tests run: total iga, ttg iga, ttg igg, ab gliad iga, ab gliad igg.

He tested in the normal range for all but his total iga.  It was slightly high at 117 - reference range 21-111.

His doctor wants to retest in 1 year, but now that I’ve gotten my thoughts together I would rather finish the full celiac panel now as well as have the genetic testing done for rule out.

My question is this this: are the ab gliad iga and ab gliad igg different names for dgp tests?  I don’t want to ask for the dgp iga and dgp igg if those have already been done.  Trying to get a solution for my buddy the fastest possible way, and unfortunately our pediatrician (while awesome and so sweet) is not very familiar with celiac and how to test for it.

Thank you so much for any input you have to give! ❤️

[cyclinglady]

Hi!  

The old AGA (anti-gliadin antibodies) tests are no longer in use, but I am not sure what country you are in.  These AGA (IgA and IgG versions) were replaced by the better and more accurate DGP tests.  I think you need to confirm with the lab as to which tests were run.  The EMA is even older.  While very specific to celiac disease, it is less sensitive.  It also is a more manual lab test, so it costs more.  A positive on the EMA is like 99% celiac disease, but it misses a little more than 10% of celiacs.  

The DGP is best for kids under three (and elderly people like me).   But he is barely in the age range for testing.  Kids do not have antibodies well established yet.  You might have to wait and have him retested in six months or a year.  

Some celiacs are seronegative which can complicate getting a diagnosis.  

All the IgA version tests should be accurate as long as he is not a seronegative celiac because he is not Immunoglobulin A (IgA) deficient.  

You could run the genetic test to exclude a celiac disease diagnosis.  Some 35% of the population (that is a tone of people) carries the genes that could develop into celiac disease but only a tiny few do.  

Talk to the lab and your doctor.  She might be right in waiting. What are his symptoms?  

[Mags88]

6 hours ago, cyclinglady said:

Hi!  

The old AGA (anti-gliadin antibodies) tests are no longer in use, but I am not sure what country you are in.  These AGA (IgA and IgG versions) were replaced by the better and more accurate DGP tests.  I think you need to confirm with the lab as to which tests were run.  The EMA is even older.  While very specific to celiac disease, it is less sensitive.  It also is a more manual lab test, so it costs more.  A positive on the EMA is like 99% celiac disease, but it misses a little more than 10% of celiacs.  

The DGP is best for kids under three (and elderly people like me).   But he is barely in the age range for testing.  Kids do not have antibodies well established yet.  You might have to wait and have him retested in six months or a year.  

Some celiacs are seronegative which can complicate getting a diagnosis.  

All the IgA version tests should be accurate as long as he is not a seronegative celiac because he is not Immunoglobulin A (IgA) deficient.  

You could run the genetic test to exclude a celiac disease diagnosis.  Some 35% of the population (that is a tone of people) carries the genes that could develop into celiac disease but only a tiny few do.  

Talk to the lab and your doctor.  She might be right in waiting. What are his symptoms?  

Thank you so much for your response.  It is very helpful.  We are in the US.  I am going to call the lab today, but I think you are right about them running the old tests.  

I never received an official celiac diagnosis myself, but have the gene for it and had all of the symptoms.  I had already gone gluten-free prior to testing because my symptoms were so severe.  So every time I hear him complain about something it’s in the back of my head that he might have it.

He complains quite often that his stomach hurts.  Sometimes it will have him in tears, other times he will just mention it.  This happens almost daily, sometimes he’ll skip a day here or there.  He has pale yellow bowel movements.  Sometimes they are loose, sometimes smelly, sometimes fluffy.  Then he won’t go for several days before he has another one.  He usually complains the most after a bowel movement.  I have just recently noticed a little bit of white spots on his teeth.  He’s also very moody (but what 3 year old isn’t? ?)  He’s a little skinny stick, but isn’t technically under weight.  This has been going on for quite some time now, and I hate to see him continue to hurt for another year.

I think I’ll talk to the lab and be 100% sure they didn’t run the DGP tests.  Then I’ll ask for the genetic test as well as the DGP.  That way, if the gene comes back positive, even if all tests are negative, I will know I’ve exhausted every option for him and will test again later.

Again, thank you so much for your input.  This forum has been so very helpful!

[cyclinglady]

 Genetic testing will just lump your son  into the possibility of developing celiac disease, along with almost a 1/3 of the population!  That is a lot of people!  Even if he has the genes, what will you do?  

I understand your position.  My hubby went gluten-free almost 20 years ago.  Twelve years before my celiac disease diagnosis.  It was recommended by his GP and my allergist.  The diet worked.  That much we know.    He refuses to do a gluten challenge because, quite frankly, we like to pay our bills and we are self-employed.  Does he enjoy the same support as me?  No.  But he has done well and is like so many other members who are in the same boat.  

We have tested our kid twice since my diagnosis.  Her most recent testing occurred this year because she was going off to university.  Like your son, she has odd on and off GI issues, but both times she tested negative to the complete panel.  She does have  Raynauds (autoimmune: blue fingers and feet) which have been observed by her doctor, but wisely not charted. (Nothing to be done anyway).  She is doomed for some autoimmune because it runs so heavily in both our families.    I will not do genetic testing.  Not because of the cost, but I worry that some stupid insurance company will prevent her from obtaining insurance (life, health....whatever).  Before the AHA went through I had difficulty getting health insurance because I had Hashimoto’s.  I could afford to buy insurance, but I was denied by several carriers.  So, think about the genetic testing and make sure the result is going to be valuable.  

My kid?  She can get genetic testing later if she decides.    In the meantime, insurance will continue to test her every few years.  They check her thyroid too.   Odds are, she has the genes.  

So my kid’s tummy aches?   Our house is gluten free.  I used to pack gluten in her lunch and she would get access outside of our home.  When she was retested, I made sure she consumed it for a solid three months daily.  I wanted to insure that celiac disease testing would be accurate.  She will say that at times, being gluten-free is better, but maybe it is because we do not consume a lot of processed foods and we do not eat out (her friend’s family seems to get a lot of food poisoning and they eat out constantly).    I do know that she has my garlic and onion intolerance which effects her gut and triggers Acne Rosacea like me.  

You can have your son gluten free for a while and then retest when he goes to Kindergarten or in a year if he did have the correct tests done.    Then a firm diagnosis can be very helpful (504 school plan) or even critical.  

Keep researching.  That way you will make the best decision for your family.  

Edited December 11, 2019 by cyclinglady

[knitty kitty]

Not sure if this article will help...it's about when antibodies develop in children predisposed to Celiac and diabetes, but it discusses the different antibody tests and the ages different antibodies appear.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2845026/

Good luck