Totally Confused

[caution1180]

Im new to all this celiac stuff so Ill just explain my situation. My daughter is 18 months old and is not growing she went from being in the 90th percentile on height and weight to falling to 3 precent in weight and about the 13th percent in height. She eats like shes starving, is anemic, has constant grainy like diareha 3-4 times a day and lately ive been noticing her belly looks like its sticking out more after she eats. Shes been tested by blood for celiac and they said it was not celiac. Can she have a negative blood test but still have celiac or do you think she has something not related to celiac?

[ShayFL]

ABSOLUTELY!!

If you read a lot of threads you will hear countless testimonials of Moms who put their children on a gluten free diet with amazing results when the tests said negative. My understanding is that in young children their immune system isnt fully developed yet, so they do not produce enough antibodies to give a positive on a test. But they are still reacting.

The longer you wait to go gluten free, if they are in fact celiac/gluten intolerant, the more damage that can be done including auto-immune diseases such as type 1 diabetes, thyroid, skin, etc.....

I dont say this to scare you. I say this because Mom's have instincts and they are usually right. You feel that gluten might be a problem. I recommend trying the diet for a few months and see if there are improvements. If there are, you have your answer and you dont need a test to tell you.

And BTW....kids dont "grow out of" celiac.

The good news is you have the opportunity to help your child grow normally and avoid awful diseases. The bad news is by being/staying gluten free she will never get an official diagnosis.

At some point as a teenager or adult she might decide to eat gluten on her own. You cannot stop that and then if she developed health issues, you could have her tested or instruct her to get tested.

All you can do is give her the best start you can.

[caution1180]

Thanks so much for your help! I really feel like there is something not right with her and I get tired of everyone telling me shes probably meant to be small, thats fine but it doesnt explain her anemia or her digestive problems! We have an appointment with a pediatric Gastroenterologist but its not until november and that is a very long wait for a concerned mom. Thanks again for your information I will definately put it to use.