Defiant behavior of newly identified celiac tween

[JDNJ]

My daughter, 12, just met with a GI doctor. She had a celiac blood panel done by her pediatrician before we went, both tests came back positive. She is scheduled for a biopsy to confirm the diagnosis (on June 7).

her behavior is awful-but not all the time. She’s constantly hungry and moody. We took her off of gluten, and she was so much better. It was incredible. But she has to stay on gluten until the biopsy. We are all at the end of our rope with her behavior. Has anyone experienced gluten related behavior problems? She frequently has  headaches, stomachaches, joint paint, is hungry, and is miserable. I’m just so tired of it. 
just hoping to hear it’s not uncommon, and that it gets better. Would also love to know if there is anything i can do to help her (she has done therapy, counseling, medication, etc). Doesn’t feel like it works.

[Scott Adams]

Depending on her blood test results doctors are moving away from endoscopy to confirm a diagnosis. Feel free to share her results if you like, but perhaps you could discuss this situation with her doctor and either get the endoscopy appointment moved to a sooner date, or get her diagnosis based on the blood test results so that she can go gluten-free ASAP.

[GodsGal]

  On 5/15/2021 at 8:18 PM, JDNJ said:

My daughter, 12, just met with a GI doctor. She had a celiac blood panel done by her pediatrician before we went, both tests came back positive. She is scheduled for a biopsy to confirm the diagnosis (on June 7).

her behavior is awful-but not all the time. She’s constantly hungry and moody. We took her off of gluten, and she was so much better. It was incredible. But she has to stay on gluten until the biopsy. We are all at the end of our rope with her behavior. Has anyone experienced gluten related behavior problems? She frequently has  headaches, stomachaches, joint paint, is hungry, and is miserable. I’m just so tired of it. 
just hoping to hear it’s not uncommon, and that it gets better. Would also love to know if there is anything i can do to help her (she has done therapy, counseling, medication, etc). Doesn’t feel like it works.

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Hi JDNJ!

First of all I want to say that your daughter is blessed to have you as a parent. I can tell how much you care. 

I know how cranky and irritable I get when my belly hurts. I would say that what your family is experiencing is pretty normal. In addition, at her age, is she also experiencing the beginning of puberty? 

Do you know other people in your area who have celiac disease or a gluten sensitivity?

How much gluten is she eating per day? I think that the bare minimum is 2 slices of bread per day. Is she eating more than that?

My guess is that June 7 probably feels like it's a long way away. Hang in there, friend! Keep us posted!