Help understanding follow-up test results

[Lana H.]

My daughter (now 12) was diagnosed in Jan. 2020 and her tTG IgA was in the high 100s if I recall correctly. After a gluten-free diet for over a year, the number was down to 15. At her next follow up almost 1 1/2 years later, the tTG IgA was higher again, at 38. She has never been symptom free (main complaints are daily nausea, random sharp abdominal pain a few times a day). We are quite strict with diet, do not eat out (other than a couple of times a year at dedicated gluten-free restaurants). She does eat more processed foods (gluten-free pasta, bread, chicken nuggets etc) than is ideal. Our home is gluten-free, she takes lunch from home to school, etc.

 

My question is, is this higher number and her symptoms clearly a result of continued contamination? I've seen members discuss those numbers being high due to other issues, but her GI didn't mention that possibility. I've combed through everything she eats and possible contamination sources and I'm at my wits end trying to figure this out. Any help would be greatly appreciated!

Here are her test numbers:

Endomysial IgA: negative (previously positive)

IgA: 118 

Glidadin (Deamidated Peptide) IGA Ab: 10.2 (previously 42)

Gliadin (Deamidated Peptide) IgG Ab: 3.2 (previously 55)

Tissue Transglutaminase (tTG) IgA: 38.9 (previously 15)

Tissue Transglutaminase (tTg) IgG: 4.0 (previously 6)

 

 

 

[trents]

There are some other medical conditions and some foods and meds that can cause elevated tTG-IGA. Crohn's disease is one. NSAIDS can cause elevated tTG-IGA. Dairy and oats (even gluten-free oats) for some celiacs causes a celiac reaction for some people. You might google, "What can cause elevated tTG-IGA besides gluten" and "What can damage small bowel villi besides gluten."

Are her vitamins and supplements gluten free? Wheat starch can be used in pills as a filler. Are the other members of the household practicing gluten free eating at home? Some people on our forum experience glutening from shampoos, body creams and lotions (any epidermal contact with wheat), and oral hygiene products.

[Lana H.]

  

She doesn't consume any oats, and rarely takes NSAIDS. She does have a fair amount of dairy, though. 

 

Yes, her vitamins and supplements all claim to be gluten free. Everyone is gluten free at home. I've done my best to check all of the personal care/hygiene products to ensure they're gluten free as well.  

 

I'll read up on your suggested searches. Thank you for your input!

[knitty kitty]

Mucosal reactivity to cow's milk protein in coeliac disease

https://pubmed.ncbi.nlm.nih.gov/17302893/

 

 

[trents]

I would give dairy a good look as the possible problem: https://pubmed.ncbi.nlm.nih.gov/2262836/ This is a very common additional food intolerance among the celiac population.

[Lana H.]

Thanks for the responses! We'll be cutting out dairy to see if that helps.