New + Serology, 2 Yrs Old

[Pickle4]

My 2 year old daughter has not gained enough weight between her 18mo and 2yr well check ups.  Less than a pound.  The ped decided to run bloodwork including Celiac.  She has NO symptoms and is an excellent eater.    The bloodwork:

Tissue transglutam AB IGA:   51 U/mL (normal ref. range <4)

Gliadin Deamidated AB, IGA 52 U (normal ref range <20

Endomysial Antibody Scr (IGA)  Positive (normal ref range – negative)

Endomysial Antibody titer 1:40 (normal ref range < 1:10)

IgA, Serum:  115mg/dL (normal ref. range 24-121)

 

The nurse at the Peds office only said “positive for Celiac. Call a nutritionist”. That’s it.   I have already taken it upon myself to call a pediatric gastroenterologist who we will see in about a month.  For now I am keeping her on gluten since my reading suggests they might want a biopsy.  I’m very worried but I am also confused about her lack of any kind of symptoms outside of not gaining weight.  If she isn’t absorbing nutrients that would indicate some serious intestinal damage – wouldn’t that come with other symptoms?  Could there be something else going on? Can she be serologically positive but not celiac?  Going gluten-free is going to be a serious challenge for my family of 6.  My family business is also an industry that essentially involves a giant grain mill.  I don't know...looking for any insights at all! 

[cyclinglady]

So sorry that your daughter has celiac disease. You are right to keep her on gluten until you have had the opportunity to talk to the GI doctor.

She is pretty young and as you said she is a good eater. Because it was caught early, she might not have the damage that older kids or adults might have.

I encourage you to research celiac disease further and make some preparations (read our Newbie 101 posting under "Coping"). The entire family will need to be tested too. Not everyone has classic symptoms of malnutrition.

As far as your business is concerned, worry about getting a diagnosis first.

Take care!

[mamaw]

sorry  about  your  daughter.....but  I think  the blood work  speaks  volumes  .....our  kid  was 2 1/2  when  we  had a endo with biopsies  done,  it  is  scary  for  a  small child,  I feel your  pain.....of  course  no one  want  to be celiac  but  I too believe  it  is  great  that   it  got  caught  early so no horrible  damage ......You  need  to test  the  entire  family....

Something  to  think  about.. She  is a good  eater  but not  gaining  weight  or  growing,  well,  that  is  celiac  in a  child.. she  is not  growing  because  she  is  getting  no nutrients  to her  body from  the  good  eating  habits! Her  body  maybe  trying  to  eat  a lot  to  get  nutrients  but  the celiac  is keeping  that  from happening....by the  way  the medical field  call this "Failure to thrive".....

Dairy  is also  broken down at the tips of  the villi  so  check  that  out  as well....

Try  not  to think of  this  as a challenge  but  a lifestyle  to health  for your  daughter...

We  all have  had  to face  changes  that  have changed  our lives  with  celiac  but it  all  comes  together  & works... Knowledge  is  your best  friend....

There are four  of  us  celiac, others  are  still okay... 

blessings

[africanqueen99]

Welcome to the board.

 

Like you, my youngest was DX when she was very young.  No weight gain and dropping off the chart between 12 and 18 months caused her DX.  At the time I thought her only symptom was no growing, but looking back I can see other things that I blew off because I had other kids (never slept, screaming at night in pain, nursed around the clock, etc).  Like I said, we just didn't put all the pieces together.  Looking at pictures of her at that time vs now it's a night and day difference.  Her skin looked shallow, her cheeks were gaunt, etc. 

 

Once one person is DX then all first degree relatives need to be tested.  This led to the DX of the oldest (who had also been tested for celiac, among many other things, the previous year, but came back negative) and finding out the middle kid is going to develop it eventually.

 

The youngest wasn't given a biopsy based on her age and her enormously high numbers (run twice b/c they were so high for her age) - whereas the other two were.  Doctors have differing thoughts on biopsy for children, but they all seem to agree that testing won't work unless on a gluten containing diet.  So live and eat as usual and plow through this.

 

Good luck!  Don't hold back any questions.  Believe me, there is a wealth of knowledge on this board.

[nvsmom]

Welcome to the board.

 

Wow.  She has more positive tests, and with higher results, than most adults get.  That is definitely celiac disease.  The GI doc will probably want to biopsy her, if so make sure at least 6 samples are taken because up to 1 in 5 celiacs has a false negative biopsy which many find very confusing.  With three types of positive tests, she should be considered a celiac no matter what happens.  

 

Take a look at the specificity of her tests in the following lab report (page 12).  Each of those tests are about 95+% specific to celiac disease, meaning that out of 100 tests, less than 5% are caused by something other than celiac disease.  With three different positives, her test result specificity must be as close to 100% as you can get, and it is quite unusual for most celiacs to be positive in so many tests. Open Original Shared Link

 

Generally speaking, people with a positive endomysial test (EMA IgA) do tend to have quite advanced damage.  It is not very common for very young children, or those with early celiac disease, to have a positive EMA IgA.  That test becomes positive AFTER the tTG IgA has already caused a bunch of intestinal damage.  The EMA IgA goes in there with the plan of wiping out the top layer of the intestines in an effort to destroy whatever has been causing the damage.  It's overkill. 

 

As the others said, the rest of the family needs to be checked.  Somewhere around 10% of celiacs have an immediate family member who also has celiac disease.  Remember that celiac disease can develop at any time in a person's life so the family will need to be tested every two years, or as soon as symptoms develop, for the rest of their lives if they eat any gluten in their diets.  Remember that those with early celiac disease may test negative, so if you suspect celiac disease in spite of negative tests, retest or try the gluten-free diet.

 

The nutrients that celiacs are often low in are: K, Mg, Ca, Fe, A, D, B12, ferritin, Zn, and Cu. You might want to get those checked.  Also, thyroiditis and diabetes (type 1) are closely linked to celiac disease so you'll want to check for that and keep an eye out for them in the future.  Happily, because you caught this early, and she'll be treated with the gluten-free diet, she is less likely to develop those diseases than an untreated celiac.  Good catch, Mom.  

 

Hang in there.  The first few months are quite hard to change the way you eat and shop, but you'll settle into it by the summer.

[Pickle4]

Thanks so much for your replies.  I met with the pediatrician this morning. He was comfortable diagnosing her as celiac disease and sending her to a nutritionist. No GI specialist or testing for any vitamin deficiencies or anything else necessary.  But I disagree so he is going to look for someone that does a lot of work with pediatric celiac.  Luckily I live near NYC and have access to excellent medical care.  My gut instinct (see what I did there?) tells me to get a baseline for her health now to find out what the damage might be, what her nutritional absorption is.  But I also confess I think I am struggling with some pretty serious denial.  

[nvsmom]

Thanks so much for your replies.  I met with the pediatrician this morning. He was comfortable diagnosing her as celiac disease and sending her to a nutritionist. No GI specialist or testing for any vitamin deficiencies or anything else necessary.  But I disagree so he is going to look for someone that does a lot of work with pediatric celiac.  Luckily I live near NYC and have access to excellent medical care.  My gut instinct (see what I did there?) tells me to get a baseline for her health now to find out what the damage might be, what her nutritional absorption is.  But I also confess I think I am struggling with some pretty serious denial.  

 

I too was diagnosed without a biopsy.  It is becoming much more common, especially for those with two or more positive tests (when there really is no question that it is celiac disease).

 

I like to compare celiac disease testing to pregnancy testing.  The ultrasound isn't usually needed when you have three positive tests lined up in front of you, but if the test is barely readable, then more testing may be needed.... but a barely positive pregnancy almost always still means a baby is on the way just like a single positive celiac disease test means celiac disease in almost all cases.

 

A biopsy isn't really needed but if you want it for your own reasons, I bet you could find a doctor to do it.

 

The nutrient testing is a good idea though - I would push for that.  The majority of celiacs are low in something, the most common being B12 and D, but the others are far from rare.  I would guess that 90% of celiacs are low in something, and that at least half of those are low enough that it is causing problems.

 

Best wishes.

[frieze]

GET THE OTHER KIDS TESTED!    yes i am yelling.  good luck.