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Anxiety Issues In 10 Year Old Celiac Daughter
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My daughter has been diagnosed about a year and half.  She's had some continued ups and downs related to the celiac and is currently on miralax as she was getting a lot of stomach cramping/constipation.  That seems to have helped a lot with the frequent tummy pain however we're now dealing with a lot of anxiety.  She is nervous in any situation where she may not be near a bathroom and gets a bit panicky.  In turn, I think the nerves cause some digestion distress (nervous tummy) and I feel we're in a bit of a vicious cycle.  We've tried to cut back on the miralax thinking maybe it was working too well but then the stomach cramping comes back.  It seems like it's actually keeping her quite regular but the anxiety is now what is causing her tummy distress but I've been unsuccessful trying to settle her down and not worry in these situations that are outside her normal routine. I'd love to hear suggestions as to how to help her feel better!  I don't want her to start holding back on activities due to this new anxiety. 

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Has she had her antibody levels checked lately?  Maybe she is getting cc'd from somewhere.

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Getting diagnosis of a serious, life changing condition like Celiac and coping with it on a daily basis can be stressful, especially for a kid.  When unchecked anxiety gets in the way of living your life, a talk with a professional can help.  It is better to do counseling for it now than let it grow into a greater issue.

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I was like that as a kid, very strange looking back because kids shouldn't have to worry about those things. I have had anxiety my whole life but it is much better since March when I stopped eating gluten. There is a learning curve and I have made mistakes but I have still seen a huge improvement with my anxiety. I think discontinuing the miralax might be a good idea, maybe her constipation issues are improving and shes feeling alot of urgency with her bowels because of the miralax?

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Don't tell the school.  In the future they might treat any missed days as due to anxiety rather than illness.  I shared my son's anxiety with the school when he was first diagnosed at age 10.  Then 5 years later my son's school put him in a special 2 hour a day (only) program to reduce stress after he missed school due to a glutening.  They would not understand despite doctor's notes.  We had removed the gluten contamination from his diet and he was better an could have attended full time at that point.  He had been an A student in an accelerated program.  He wasn't allowed to even bring home any work or continue with his advanced courses.  His teachers had been told to only give him the work required to just pass.  How on earth you are supposed to learn enough to do well on exams this way? 

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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