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3.5 Yr Old Daughter May Have Celiac?
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First off Happy New Year! So a little background.... i am currently awaiting the results of my celiac panel (tuesday morning) but I am starting to wonder if my 3.5 yr old daughter may have it as well. From the get go she has had a terrible time gaining weight. Every month until she was 1 we had to take her in for weight checks. Once she started truly being on solid foods (about 1 year old) she had chronic constipation, so bad at 2.5 we took her into a pediatric gastro because she would go 10 days without going and no matter what we gave her (fiber, massive amounts of fruit you name it we did it) they just brushed it off as she was doing it to herself and put her on miralax. It has gotten better on its own (stopped the meds about 6mo after she started them) but she still isnt 'regular'. Complains her 'tummy hurts' first thing in the morning, almost every morning. One thing that I didn't know if anyone else has come across is horrible night terrors. She will wake up screaming, running around the room in circles almost like she is in pain. She is not awake during the episodes. They last anywhere from 10 min to the longest being last night at 45 min.... has anyone else's child experienced this??

I also want to add thank goodness for this site! I now know how to approach my results and doctor when they come in and it has been sooo helpful to me!

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My middle son struggled with constipation and a daily probiotic did the trick for him. He also did not sleep well when he was constipated, but he did not have night terrors.

My daughter (who has gluten intolerance) was failure to thrive from her issues with gluten. It doesn't sound far fetched that your daughter might have it. It might be good to get her tested before initiating a gluten free diet.

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I would get her tested. My oldest daughter had constipation problems since she was about one some months she was fine then it would start up again one time they have her medicine to help. I finally got her tested at 4 1/2 after I was diagnose now she's been gluten free 6 mtgs and it has gotten slot better. She only has issues if she get glutened.

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My daughter used to wake up at night crying with no reason behind it. She had open eyes but seemed "out of it" I could not get her to stop crying nor figure out what was wrong. Sometimes I had to get her up and out of the room to "wake her up" other times I just rub her back and she stops. Since going gluten-free this does not happen anymore. I am positive it had to do with gluten...either nightmares or just not feeling well but being unable to explain it.

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My daughter used to wake up at night crying with no reason behind it. She had open eyes but seemed "out of it" I could not get her to stop crying nor figure out what was wrong. Sometimes I had to get her up and out of the room to "wake her up" other times I just rub her back and she stops. Since going gluten-free this does not happen anymore. I am positive it had to do with gluten...either nightmares or just not feeling well but being unable to explain it.

My daughter had this same problem, she would wake up crying and screaming. I would try to calm her down and she would look at me like she didn't even know who I was or what was going on, it was heartbreaking to watch! I would just hold her and comfort her until she calmed down and went back to sleep. Doesn't happen when we're strict gluten free but if she gets glutened she'll start with the restless sleep again and wake up whining or crying.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
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    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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