Bad Numbers Compliance Test, Where To Start

[MiaT]

Hi Everybody -

My daughter, 8 was diagnosed with Celiac back in April. We just undertook our first compliance ( blood) test. I was told she scored 47 but should be down to 4. She previously had been >100, but we don't know whether this was 507 and we've made great gains or just 101 and we've done just alright.

I'm wondering if there are some gluten culprits I should be on the look out for that we haven't found yet.

As soon as I heard that she was Celiac I cleared out the cupboards - but I'm not sure about toiletries. We've changed out her toothpaste, cold medicine, mouthwash...is there anything else I should be looking at??

We're also wondering about our Trader Joe's balsamic vinegar, which we use almost every night - should we look for a gluten-free version?

Is there anything else that might have tripped you up with gluten that you hadn't expected? I'm not surprised that my daughter isn't yet where she should be - her stamina hasn't quite returned yet.

Thank you in advance for any suggestions or tips. Last December my girl was diagnosed with type 1 diabetes and we've done well managing it - now we need to focus on her Celiac.

All best,

Mia

[Lisa]

  On 9/8/2012 at 8:28 PM, MiaT said:

Hi Everybody -

My daughter, 8 was diagnosed with Celiac back in April. We just undertook our first compliance ( blood) test. I was told she scored 47 but should be down to 4. She previously had been >100, but we don't know whether this was 507 and we've made great gains or just 101 and we've done just alright.

I'm wondering if there are some gluten culprits I should be on the look out for that we haven't found yet.

As soon as I heard that she was Celiac I cleared out the cupboards - but I'm not sure about toiletries. We've changed out her toothpaste, cold medicine, mouthwash...is there anything else I should be looking at??

We're also wondering about our Trader Joe's balsamic vinegar, which we use almost every night - should we look for a gluten-free version?

Is there anything else that might have tripped you up with gluten that you hadn't expected? I'm not surprised that my daughter isn't yet where she should be - her stamina hasn't quite returned yet.

Thank you in advance for any suggestions or tips. Last December my girl was diagnosed with type 1 diabetes and we've done well managing it - now we need to focus on her Celiac.

All best,

Mia

Hello and Welcome!

Recheck everything that can past her mouth, as in shampoo, vitamins and call the manufacturer for all meds she may need. Keep a food diary.

Does she have a separate toaster? I don't have a Trader Joes's near me, but it it's just plain Balsamic Vinegar, it should be ok.

And school? Is she tempted to share food/snacks/lunch. And she needs to wash her hands frequently at school to avoid any contract with leftover crumbs from other kids.

Glad she is feeling better. Looks like just a few tweaks should put her on the road to full recovery.

[Newbee]

I'm not sure which of the blood tests they gave her exactly, but sounds like she has only been gluten free for a few months. It can take awhile to have a normal blood test especially if she had a very high one to start with (which sounds like she did). For example, my first ttg IGA was 125. The second one after almost 7 months was 33 (still positive but down quite a bit). Are her symptoms improving? If so, this is a sign that she is slowly getting better.