Toddler Diagnosis?

[CatLady15]

My 2 year old son has been slow growing and gaining weight. At each of his standard check ups the pediatriation would hem and haw when she saw his percentiles come in. At his two year appointment, he was below 10% ile (originally around 45) for both hight and weight. Since he is a very good eater (I’m quite petite but dad is very tall) she referred us to a GI specialist. He has no remarkable GI symptoms. 
 

the GI specialist initially brushed me off but ran bloodwork. His results came back as:

everything normal except:

-TTG IGA weak positive (normal IGA level)
-slightly low hemoglobin and hemacrit
-deamidated Gliadin Peptide, IgG: weak positive
-AST high 

We proceeded with a endoscopy with biopsy which revealed “mildly increased intraepithelial lymphocytes” in the Duodenum and Duodenal bulb. 
 

Doc was not sure beyond “it could be celiacs or not” and had no further suggestions. I was frustrated since our first meeting 2.5 months prior he still had not grown any and had actually lost weight (now in the 3%ile) so she agreed to test him for the celiacs gene. Blood test confirmed positive for DQ2 gene that varies celiac. 

She suggested try gluten free for three months and re-test blood then. I am fine with this plan moving forward (for now) but curious if anyone has had similar test results, especially with someone so young (still not 2.5). 
 

he has been gluten-free for just over a month now and has already gained 2 lbs. Not sure if it is related. 

[trents]

Welcome to the forum, @CatLady15!

Your son's test results, both bloodwork and biopsy, are not uncommon for someone with celiac disease. The test results are not dramatic but they often aren't. The DQ2 gene is the strongest single gene marker indicating the potential for developing active celiac disease. AST is a liver enzyme. About 20% of celiacs have elevated liver enzymes. I was one of them and it was elevated liver enzymes that started me on the journey eventually leading to my celiac diagnosis over 20 years ago. 

This link might be helpful to you in achieving the gluten free diet for your son. It often involves a real learning curve:

 

[Scott Adams]

Your son has two positive blood tests for celiac disease, plus a positive biopsy for it...why hasn't your doctor diagnosed him with celiac disease, which is the most likely diagnosis based on the test results you shared? The next step should be a gluten-free diet, which your doctor already recommended. 

 

 

[Wheatwacked]

On 11/25/2024 at 8:52 PM, CatLady15 said:

he has been gluten-free for just over a month now and has already gained 2 lbs. Not sure if it is related. 

After 3 months without gluten he will have healed and his blood tests will be negative. That does not mean "not celiac, ok to eat wheat, rye and barley again.  It does mean the diet is working.  Many of those recently diagnosed with Celiac Disease are often deficient in vitamin D and other vitamins and minerals.  It's a side effect called Malabsorption.  Get his blood checked for 25(OH)D level to be sure.

[Wrensmith]

With such a weak positive, his got may or may not be cleared in three months. My daughter when diagnosed at the age of seven had a TTG score of 388. It was 18 months on a gluten-free diet before her levels returned to normal.

it seems to me that when you started something that allows your son to gain weight, as he clearly needs to do, you may want to keep doing it.  Sometimes you just need to figure out the science of it as you go along.

Have you been tested?  That’s how I found out I had celiac disease, was after my daughter was diagnosed, and the recommendation given to me was that all of her first-degree relations should be tested as well. I came back with a weak positive when I was on a largely, though not entirely, gluten-free diet (cooking for my newly diagnosed child).

good luck with everything.

[DebJ14]

They will have to put him back on gluten in order to get accurate tests results, so all the progress may be lost for a while.

My grandson was 2 1/2 years old when he, his father, and his mother, were diagnosed.  He was not even on the chart for height or weight and had not been on the chart since he was 12 months old.  The first month he went gluten free he gained 6 pounds and grew an inch. 

Unfortunately, he missed a whole lot of opportunity to grow in those first years.  He remained the smallest, skinniest kid in the class until high school when he clawed his way into the middle row for pictures.  He is 20 and topped out at 5 ft 6 inches.  His mother is 5'7 in a family where everyone is 6 feet tall or more.   His younger brother was 7 months old when he was diagnosed.  At 18 he is 6ft tall.  Best to catch it as early as possible.