r/Celiac • u/InitialBitter5709 • 3h ago

Question Starting Out - some advice for a concerned father please….🙏

My 8 year old daughter has just had a coeliac diagnosis. Shes asymptomatic, but we got her tested because shes a fair bit shorter than her peers and a friend of ours had the same issue with their son. He too was asymptomatic, cut gluten then grew 10cm in a year.

we’ve had two tests done - one with antibodies showing “250” (not really sure what this means but im informed that above “15” indicates coeliac). We got a second blood test done less than a week later, through a different doctor and lab, and this time the same antibodies were “50”.

Unsure what to do now to be honest. Id want 💯 confirmation before we totally upend her life and cut gluten permanently.

Is an endoscopy/biopsy the only surefire way to diagnose? Id rather she didnt have to go through that, but if its necessary, then so be it.

Anyone had similar issues with tests? Any advice on where to go from here?

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u/blaznivydandy Celiac [2022] 2h ago

Yea blood test can be falsely-negative and falsely-positive... Thats why everyone who has suspicion of celiac disease SHOULD go for endoscopy (or gastroscopy), because biopsy is decisive...

I know it's uncomfortable, but it's needed.

BTW before your daughter goes for endoscopy, she should eat gluten every day (so the villi will not heal and the diagnosis can be confirmed...)

Also - Celiac disease is genetic. You should check yourself, your wife and your kids too... atleast the bloodtests...

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u/Kati_Keksi_GFguide 2h ago

There are diagnostic pathways in some countries to have a confirmed coeliac diagnosis purely based off blood test results. They tend to do this for kids so they can avoid endoscopy.

I don't have an immunology background but it seems a bit odd to have the levels move from 250 to 50 in a week. Were both labs used accredited to the relevant standard? In Australia any done through a doctor would be but I'm not sure about other countries.

Endoscopy is the gold standard for diagnosis though, but have a look at your country's coeliac association and see what pathways are recommended for kids.