Toddler Needing A Diagnosis

[RiverCity]

Hi all -

I have celiac disease (positive antibody test + DH) and have a 2.5 year old daughter with unexplained balance issues and general malabsorption symptoms. She has been on a gluten-free, cow-milk free diet for over a year and strangely the onset of her ataxia was after her diet was changed.

Although we continue to search for a cause for her ataxia (and some days/weeks her balance is worse than others) I cannot help but wonder if her symptoms are related to celiac disease. We've been searching for a cause (EEG, MRI, EMG, etc.) for over 9 months and have found nothing so far.

I don't want to just assume everything is being caused by celiac disease in case it is not. She has had the antibody test which came back negative. The gluten-free/cow-milk free diet has not gotten rid of her iron absorption issue and her balance issues have better days / worse days. I don't think she is getting contaminated anywhere so I wonder if perhaps it is not celiac disease but just have no idea.

Any thoughts on how to figure this out?

Any thoughts on who we should be working with on this?

Should we be consulting an immunologist?

The neurologist wants to do a spinal tap next and I cannot help but think we're on a wild goose chase but have no idea how we could find out for sure if her ataxia is celiac disease related...

Any help is greatly appreciated!

[tarnalberry]

She could have celiac disease AND something else going on. If she's gluten free, you can't test her to find out if she has celiac; the tests are useless.

If I were in your shoes, I'd probably stick with gluten free ('cause it won't do any harm), and continue with the additional testing.