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Advice Please!
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Hi, my daughter was diagnosed with celiac disease in March and has been gluten-free since. The results have been remarkable! Due to moving this summer, we were just able to have her first "check up" with a Ped GI specialist on the 3rd. He told me he doesn't regularly do blood tests on patients and since she is growing so well and he said we were being so careful he didn't see any need to test her. I was under the impression regular blood testing was needed to make sure no gluten was getting in undetected. I didn't push the issue on Friday since we have just changed from teflon pans to stainless steel (I was hopeful in beleiving those who told me I didn't need to, but I think you guys are the experts!) I didn't feel the test would tell me much. Her symptoms at first went away, but after we moved here this summer, I accedently used the wrong butter on her pancakes once, but have noticed gluten like reactions off and on for the past few months. They are much more mild than what she had, but it concerns me. The Dr. told me it was most likely IBS, which makes me even more skeptical of him! I think if I insist on testing he will do it, but I don't know how soon to do it, since we have only been rid of teflon pans for a few weeks. Sorry for my rambling, any advice would be helpful though!

Thanks,

Michelle

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Well, I'm not an expert, but I do know that if your doctor refuses to do any tests that you want (within reason), then he is not the best doctor for you. If you feel that your daughter might be getting some gluten from an unnoticed source, then you should be able to have her tested.

Also remember that doctors get tired of listening to "overprotective" parents (not that I think that you are, you are just being cautious, but he might think otherwise) so don't go in with both guns. Just ask nicely, and if he doesn't ask for a referral for a second opinion. If he won't give you that, then he is not a good doctor at all. Hope this helps.

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Thanks for the quick response Dave! I guess I should clarify. It sounded like he would do the test if I really wanted, I just didn't know what it would tell me since we have just made a change. If it did show gluten, I would have assumed it could still be from using the teflon pans, and since we have already changed, I wouldn't know if she was getting some from somewhere else. Once I feel that enough time has passed since changing pans, I plan on calling him and asking for that blood test, just to ease my mind. I guess what I am wondering is if regular blood testing is the norm, and how long it can take to clear the blood system.

Thanks,

Michelle

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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.  
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