Six-Month Bloodwork - What To Look For?

[MyCeliacKid]

My 10-year-old daughter was diagnosed with Celiac in January. (TTG >120, positive visual on endoscopy, positive biopsy; yes, she was a very, very sick girl with TTG that high.)

 

She goes back soon for her 6-month check-up with her pediatric gastroenterologist, and he had her peds clinic do a blood draw in advance of this. I realize her peds GE will be the expert at reading all the blood results, but they are available on my peds clinic's online portal for viewing already and, well, I can't help but be curious.

 

Does your gastroenterologist re-run the celiac panel bloodwork with any frequency? I was a little surprised that it doesn't look like a new celiac panel was ordered, as I don't see TTG or IGA any of those usual suspects on the very-lengthy list of blood test results that I see for my daughter's checkup.

 

Are there any specific levels that you continue to see elevated? Or should they all go to "normal"? (And if so - how quickly to normal?) My daughter appears to have oh-so-slightly elevated lymphocytes (1 percentage point above normal range). But her eosinophils are also elevated, to the tune of 4x normal range. I really didn't know how quickly to expect all her blood levels to get to normal range - did you see your ranges get to normal within 6 months? Or should I be patient and hope for more improvement at 12 months?

 

[cyclinglady]

I am sure a parent will respond, but healing can take months to a couple of years (probably faster for kids). Antibodies for some people, take a long time to come down. I have never gone back for a follow-up celiac blood test because I have been diet compliant. How do I know? I have been cooking for my husband who has been gluten-free for 13 years. Plus, my anemia has resolved (within six months) and I am feeling good. It did take a good year for me to really feel good.

Why am I telling you this? Six months may just be too soon for the GI to check. There is a steep learning curve and that takes time. Lots of mistakes are made (accidental exposure) during the first few months.

But I think it is a good idea to re-check kids at a year or sooner if there is no improvement at all. Kids tend to "cheat" when they are out of your sight. I would imagine there would be some improvement, but if not, you will have to figure out where the gluten is coming from.

[kareng]

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New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening."

[greenbeanie]

It's strange if they just did the other bloodwork for follow-up, and not the celiac tests too...

My daughter was diagnosed just after she turned four, and her tTG was 65 at diagnosis, with a reference range of 0-3 as negative and 4+ as positive. So it was over 16x normal at diagnosis. Six months after diagnosis, it was down to 9. Nine months after diagnosis, it was down to 5. It stayed at 5 at a year after diagnosis and some symptoms had returned, but we traced it back to a few weeks' exposure to a non-food source. Her doctor would not agree to test DGP for follow-up too, despite repeated requests, until this last round when the tTG hadn't changed. He did order it for her next check in a couple months.

Definitely get DGP run too if you can! Then if tTG is still positive, that can help determine whether it's just slower-than-expected healing or actual continued gluten exposure. With a high tTG to start, it certainly seems reasonable to think it might still be positive after six months. As long as it's heading down, that's a good thing. I'd heard from many people (including my daughter's GI) that kids heal faster than adults, but I'm not sure that applies to kids who were very sick and/or undiagnosed for a large portion of their lives. My daughter's GI symptoms and rash went away quickly, but some of the neurological stuff took much longer and is still improving now. Her symptoms have tracked her tTG level pretty closely, though I know that's not the case for everyone. Good luck!