Celiac testing

Ajmama2010

Hi, I am new to the boards but have a question about celiac disease. My daughter is almost 3, she just a had a negative celiac blood panel although has many symptoms and strong family history of celiac. Her pedi advised me to go ahead and put her on a completely gluten free diet and watch for changes. It has been 3 weeks gluten free and most of her symptoms are gone. Yay! However I am curious how much I should care about a diagnosis and what testing would possibly even help get a diagnosis? Does anyone have experience in testing a toddler as my pedi isn't even really familiar with it? Also I have an infant just starting to eat solids and wonder if I should avoid gluten with him also or wait to see if he has a reaction first?

tbmadeamistake

I (at the age of 25) continually had negative blood panels for celiac.  However, I did test positive for a wheat allergy and I have the genes for celiac, both of which are simple blood tests.  I cut out gluten and 90% of my symptoms went away!  If your daughter is happier without the gluten, I would not worry about an "official" diagnosis.  Even the gut biopsies, which I would never recommend for a child, can come back with false negatives.  The only true way is an elimination diet, which it sounds like you are doing.  The best part about the gluten free diet is that if you want to see if she still needs it in a year, give her a slice and see if she gets sick again. 

My daughter is now 14 months and she also eats gluten free.  Looking back, I had symptoms my entire life and thought they were normal because it was what I had grown up with.  I don't want C to have to go through that.  When she is old enough to start communicating what's wrong when something bothers her, we'll give gluten a shot.  Until then, with more than half the stuff in the house gluten free anyway, it's not a big deal to keep her gf as well. 

Also, you will find research on all sides of this issue.  The above is based on my own experiences.  I'd be happy to share more if you have any other questions!

law&order

Hi, I posted about celiac disease several days ago. You can see a few responses down the page a bit.  

We're just getting started and have an "inconclusive" celiac panel on our son.  His GI will likely want to perform an endoscopy to biopsy his intestines for damage sometime in the next two months. As I understand it, there are a lot of false negatives for celiac disease. Endoscopy can help diagnose, however it's not perfect and it could also result in a false negative. If you take a child off gluten before testing, their tests will very likely be negative. We were advised to keep our son on his regular diet during testing. 

Have you considered seeing a pediatric gastroenterologist? That would be my next step in your situation, given the family history and that your pedi is unfamiliar.  

Good luck! 

Ajmama2010

Thanks for the suggestions. I am currently in contact with my insurance to find a pediatric gi as the one the pedi suggested doesn't take our insurance. I am also looking into the genetic testing for myself and my daughter. @lilygrace48 how long were you off gluten before you noticed a difference in yourself? I have many symptoms myself but have been gluten free since I took my daughter off and have not really noticed a change.

tbmadeamistake

@Ajmama2010, I think I noticed the biggest differences after about 2 months.  I kept track of my symptoms and how bad they were on a number system (per my doc) and measured every 2 weeks.  By month two my number had dropped signifcantly and I was really able to tell that I was getting better physically.