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Defiant behavior of newly identified celiac tween


JDNJ

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JDNJ Newbie

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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Scott Adams Grand Master

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 Community Regular
2 hours ago, 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.

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!

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      @Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.
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    • sillyac58
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    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
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