Second child with Celiac

[lizzie42]

After my 3 year old daughter's diagnosis, we all got tested. My 5 year old son also came back positive with number 12x the upper limit. 

We will confirm with another tTG and the other 2 tests in the panel. 

He has zero symptoms that I have noticed. Maybe occasionally vomiting. He does have asthma. He's kind of an a**hole sometimes but also he's 5. He has SO much energy. Like miles and miles of biking, running, gymnastics. Never stops. Eats great, normal growth. It was comparing my daughter to him that made me push to figure out what was wrong with her! 

Is it possible for a tTG test to just be totally wrong? 

[Scott Adams]

Your son's situation highlights an important reality about celiac disease - it doesn't always present with classic symptoms. While his tTG-IgA result being 12 times the upper limit is strongly indicative of celiac disease (false positives at that level are extremely rare), you're absolutely right to confirm with the full celiac panel before proceeding with any dietary changes. The fact that he's asymptomatic except for occasional vomiting is not uncommon - research shows about 20-30% of celiac cases in children present atypically or silently. His asthma could potentially be related, as some studies suggest connections between celiac and other immune conditions. The high energy levels and normal growth are great signs of his current health, but don't rule out celiac - many undiagnosed children show no growth issues. While it's theoretically possible for tTG tests to be wrong, the extreme elevation makes this very unlikely. The next steps you're taking (repeat testing and full panel) are perfect - this will give you definitive answers before making lifestyle changes. Remember, even if he continues to show no symptoms, untreated celiac can still cause internal damage and long-term complications, so it's good you caught this now. Many parents report behavioral improvements after going gluten-free, so you might even see positive changes in his mood and energy regulation if he does have celiac and starts the diet.

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

 

 

[lizzie42]

Well, the problem is we kind of did proceed with dietary changes. Until his ASK study test he was eating school lunch 3x a week (high on the gluten) plus occasionally a weekend treat with gluten. Since the test I went to packing his lunch and everything he eats at home is gluten-free due to his sister. I would say 1-2x a week for the last 3 weeks he had a decent serving of gluten like pizza or a cupcake at a party. Will that be enough for an accurate result? I assume a number 12x the limit isn't going to back to zero in 3 weeks of eating *mostly* gluten free. I am kicking myself now because I was so sure he'd be negative I didn't even make an effort to have him keep eating gluten after we drew his blood for the ASK study. Never thought we'd need a confirmation test. 

And we probably won't even see the GI so we will have to make our own decision based on the results. The pediatric GI telehealth appointment was almost $500 for a 30 minute appointment and it's just out of our price range to do that again with another kid. 

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

  Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

Expand Quote  

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Scott Adams]

Did you get any further tests done? Just curious if you know more now.

[lizzie42]

We decided along with the pediatrician based on his results and his sister having it that he does have it and proceeded with the gluten free diet. His behavior seems a little different so we will see how things change over the next few weeks! We think we just caught it really early. 

 

He can always do a gluten challenge when he's older if he wants to, but my hunch is that when he eats it on accident we will find out pretty quickly!