9Yo Daughter No Test Results But Sick

[Motherbird7]

So, all my seven children have been tested for celiac as of last Friday but I have not recieved the results yet. Before testing, I was making sure they all were eating whole wheat sandwiches and other store bought bread products but I tossed all wheat flour and gluteny ingredients from the home. We ran out of bread a couple of days ago (after testing but before results) but didn't miss it because I was experimenting with gluten free baking.

So...my 9yo daughter is one of my children who I have been wondering about since I was diagnosed celiac. She is my picky eater, often complaining of stomachaches and headaches. After she ate her dinner tonight, within 10 minutes she came to me and said "Mom, I can't eat beans remember, they always give me a headache." Within 20-30 minutes she was sick in bed at 6pm with body aches and a throbbing headache and mild tummyache. Even though she has complained of beans before, I thought to check with Dad (a friend had brought dinner over while I was busy working on a project in another room) and realized she had eaten a whole wheat tortilla with it.

My instinct is to keep her far away from gluten but do I need to continue giving her bread in case we need any further testing?

[MitziG]

Yes, she needs to keep eating it. Blood tests often give false negatives, so if you still feel she has a problem with gluten AND WANT THE OFFICIAL DX, then she will need a biopsy of her duodenum. (This can also give a false negative however, if they don't biopsy the correct spot.) Also keep in mind she may not have celiac disease, but may very much be gluten intolerant. When all tests are done to your satisfaction, THEN take her off gluten. Good for you for getting the whole family tested!

[Motherbird7]

Yes, she needs to keep eating it. Blood tests often give false negatives, so if you still feel she has a problem with gluten AND WANT THE OFFICIAL DX, then she will need a biopsy of her duodenum. (This can also give a false negative however, if they don't biopsy the correct spot.) Also keep in mind she may not have celiac disease, but may very much be gluten intolerant. When all tests are done to your satisfaction, THEN take her off gluten. Good for you for getting the whole family tested!

Thanks MitziG, now I just need to convince my parents to get tested....

I am a little confused still about non-celiac gluten intolerance. I have been understanding it to be on a spectrum that progresses towards celiac or can be triggered at any time? If not, then how know if she is 'safe' to eat gluten sometimes even when it makes her sick?