Daughter's high test results.

[bpritch27]

Hello,

I'm looking for some help/input on my daughter. She turned 3 in November and was diagnosed with Celiac Disease one year ago, just following her 24 month checkup. Last week she went in for her one year follow-up lab test and we were completely shocked when her Gliadin (Deamidated) AB (IgA) level came back at 148.3 U/mL. For reference, her initial lab was at 46, and her 3 months off gluten level was 25.3. 

She has been 100% gluten free since 12/26/23, and her first lab test was showing improvement. We have hardly altered her diet in the last year, and everything she ingests is labelled gluten free. After the most recent lab test, we checked her body wash and found that it may contain gluten, but it was the same body wash she used a year ago as well when she was improving. Her medicine is gluten-free, her toothpaste is gluten-free. 

My wife and I have been so careful to keep her away from gluten, and yet here we are at a complete loss as to how she has continued to be exposed. Any help or advice would be extremely appreciated!

[trents]

Welcome to the forum, @bpritch27!

Is your daughter still consuming oats (even "gluten free" oats) and dairy?

[bpritch27]

Thanks @trents! Seems like I'm a year late to the party given the timing of the diagnosis, but better late than never. 

She does still consume dairy and some oats. The oats are certified beyond celiac gluten free. 

[trents]

The problem with oats is not necessarily cross contamination with gluten containing grains such as wheat, barley and rye. The problem, even with "certified gluten free" oats can be the oat protein avenin which is similar enough to gluten that it causes a "cross reaction" in about 8% of celiacs.

Even a higher percentage of celiacs react to the protein casein in dairy like they do gluten. Some small studies put the rate as high as 50%. Sometimes this disappears with time as more complete healing of the damaged villous lining of the small bowel happens.

On top of these considerations is the fact that the children have immune systems that are immature and in flux, changing as they grow. But it might be worth it to do a trial removal of dairy and oats for several months and have her retested.

[bpritch27]

That is very disheartening... She's due for the celiac genetic test, and the gliadin test again in 3 months. 

Oats are easier to avoid, the milk is going to be an issue. 

Thank you! We'll see how this goes. 

[bpritch27]

It doesn't look like either avenin or casein would contribute to her IgA levels being high. From my understanding, that is only an indication of gliadin, which is only in gluten. 

I should have noted that she does not have any symptoms of being constantly exposed to gluten as the test result shows. No intestinal discomfort, no brain fog, no lack of energy. She is still growing and gaining weight, which was the first indicator that she was not absorbing nutrients properly and led to her celiac diagnosis. 

[trents]

I think we all wish that managing celiac disease was a simple as just avoiding gluten. And I think we all enter into the journey with that naive misconception. And for some, it is that simple. But for many, it is not. The same processes that resulted in the immune system misidentifying gluten as a threat opens the door for misidentifying other food proteins as threats. At it's core, all this simply is the result of an immune system that has become dysfunctional in some ways and is hypervigilant. 

I assume you already know that genetic testing cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only about 1% develop active celiac disease. However, genetic testing can be used as a rule out and thus to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity). 

[trents]

Were any other celiac antibody tests run besides the DGP-IGA? Was a total IGA test run to check for IGA deficiency? There are multiple IGA tests that can be run as well as several IGG tests when checking for celiac disease. The DGP-IGA test is helpful when diagnosing children whose immune systems are immature.

 

[bpritch27]

Her IgA was normal at 89.

TTG IgA Ab was less than 1.

[Jsingh]

On 3/27/2025 at 10:10 AM, bpritch27 said:

Her IgA was normal at 89.

TTG IgA Ab was less than 1.

Hi, 

My daughter has reacted to casein and the symptoms are unmissable- totally gluten symptoms. Joint pain, nausea, intestinal spasms. This has happened ten months after we went dairy free along with gluten free post diagnosis. I am certain she is reacting to casein. We never did oats for the same fear. Not even going to try the Certified one. 

It might be worth looking at the meds- xanthan gum, guar gum, and cellulose gum is also what she reacts to. I bet you’ll find them in every OTC for kids. 

We have stopped using things like honey -!: ketchup as well. Basically anything coming out of a packet. 

My daughter was diagnosed with >100 ttg. Five months later in was down to 13. But then she had literally no symptoms. 
 

As time has passed she reacts to slightest of things. We have obviously stopped casein, we only needed it for butter, because almost every cooking oil has been prone to contamination for us. It’ll be interesting to see what her labs look like in June, which will be an annual antibody test. We decided not to test her at six months this time because I was certain she was reacting to many things .

She is six now and was diagnosed at five. I cannot tell you how wrong the doc was when she said oh just don’t eat gluten and she’ll be fine. Doctors send ups packing like that. I wished it was as simple as that. 
 

I hope your daughter feels better soon.