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Guest	Posted: Thu Jul 14, 2005 3:41 pm    Post subject: Matthew Update Hello everyone, I'm sorry I haven't posted in awhile. I have been reading threads, but haven't been able to respond for we are on vacation out of town. Actually, you may remember, but my parents were going to take Matthew for awhile, but due to his "health and diet problems" (as they state it) they felt it best that mom tags along. I am happy to report, it's going wonderfully (thank you Lord!) He hasn't had any gluten or dairy accidents. I have had to oversee all of his meals, but I knew that's why I'm here. Before we left, his pediatrician had him retested with the antigliadin blood panel. Well, the day they ran the test, I did some research (after his ped said it didn't matter) and found out that the test most likely won't be accurate because he's been (minus a few "gluten accidents") gluten free for nearly a year. Of course the test came back negative. *sigh* My husband didn't react exactly like I feared he would for I showed him the research and he read for himself. However, it saddens me to hear his response of "lets just let him have gluten for a week or so and retest him." To me, that is just cruel!!! Besides, he's not the one who'll will have to deal with the side effects of it. His ped is doing some checking on what else can be done without putting him through too much. I'm afraid the list will be short, very short. She did say, she's willing to state in writing if need be, for school or daycares or such that Matthew is Gluten and Dairy sensitive, and must avoid all food containing either. Which, I suppose will help. I just don't understand why the positive panel he had nearly a year ago (while he was on gluten) wasn't enough to give him a dx from a doctor. We wouldn't even have to consider giving him "posion"!! Which, I don't think I will allow to happen at this point, I don't care who's support I have or not any longer, I know what the slightest bit of gluten does to my son, and that is enough proof for me!! If by chance it becomes a problem with the school, I will just homeschool him. (which I have considered doing with both of my children prior to this anyway.) Hubby.. well, a few nights on the couch may change his mind! Before I sign off, does anyone know of any other fast food restaurants besides Mcdonalds that serves gluten free foods? We don't eat much fast food at home, but with a full day of traveling coming up... it'd be nice for a break. Other wise, I'll just pack food for the trip like I did on the way here. Thanks gang for being here! God Bless, Kristie
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aklap Joined: 02 Oct 2004 Posts: 8795 Location: WI, USA	Posted: Thu Jul 14, 2005 4:49 pm    Post subject: Hi Kristie, Sorry to hear of the struggles! Thanks a lot for the update! Very short on time. I'll answer more later... Look here for GF menus: http://www.celiacforums.com/viewforum.php?f=2 Lots in here: http://www.celiacforums.com/viewtopic.php?t=24 I hope this helps! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa Last edited by aklap on Wed Sep 20, 2006 9:35 pm; edited 1 time in total
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skbird Joined: 13 Jan 2005 Posts: 245 Location: California	Posted: Thu Jul 14, 2005 4:53 pm    Post subject: It must be really hard when it's your child who is sick. I am glad to hear he is doing well without gluten. I don't eat at a lot of fast food restaurants but have heard some items at Wendys are ok. Also, I do eat at In N Out Burger - you can get a burger "protein style" there, wrapped in lettuce, and that is ok. I don't know if the secret sauce there is ok - I usually get it plain. Or I get "The Flying Dutchman" which is two patties with cheese melted in between, nothing else (though I do have them put onion on that). I have not gotten sick from that. My best to you. _________________ Stephanie
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aklap Joined: 02 Oct 2004 Posts: 8795 Location: WI, USA	Posted: Thu Jul 14, 2005 9:19 pm    Post subject: Re: Matthew Update OK - I'm no longer at a customer site working...so I can post now! LOL!!! Quote: Before we left, his pediatrician had him retested with the antigliadin blood panel. Well, the day they ran the test, I did some research (after his ped said it didn't matter) and found out that the test most likely won't be accurate because he's been (minus a few "gluten accidents") gluten free for nearly a year. YEOW!! Yeah - a year would matter! Giving him gluten for 1 week really wouldn't do it. A typical gluten challenge is 35g (1 bagel/ 1 or 2 pieces of bread) per day for 6 weeks! I tried to do this, but called it off after 5 days. You could try the stool tests from www.enterolab.com. They supposedly can detect evidence of gluten for up to 2 years after being GF! Quote: I just don't understand why the positive panel he had nearly a year ago (while he was on gluten) wasn't enough to give him a dx from a doctor. Please forgive me as I have forgotten your history ...Did they want to do a scope to take some biopies? Usually if they get a positive blood test, they will check for villi damage. Unfortunately, some docs won't recognise that. The bloods tests are not perfect - that's why they usually do the scope. Postive blood work and negative biospy is another problem - most docs won't dx CD because CD by definition has villi damage. They are told they don't have CD and continue eating gluten - and continue feeling like crap. Many people fall thru the cracks because they have gluten sensitivity. I would've fallen thru had I not been doing research Quote: We wouldn't even have to consider giving him "posion"!! Which, I don't think I will allow to happen at this point, I don't care who's support I have or not any longer, I know what the slightest bit of gluten does to my son, and that is enough proof for me!! I am glad you are being pro-active about this. At some point in time you have to listen to what the body is telling you - regardless of what the docs say (with in reason of course). If you know Matthew is better GF and CF - so be it! If the doc will give you the note stating that fact - GREAT!! From an insurance stand point - it might be better for him w/o an offical CD diagnosis. I hope hubby will support you in that decision. It will be hard if you are trying to keep him GF/CF and he is letting him cheat. I sure hope for hubby's sake that it doesn't come to "the couch" hehehe I wish you and Matthew luck in your GF journey! I am so glad he is doing better! Keep up the great work Mom!!!!! _________________ Al “We cannot all do great things, but we can do small things with great love.” Mother Teresa
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Jeannine Joined: 02 Apr 2005 Posts: 160	Posted: Thu Jul 14, 2005 9:34 pm    Post subject: xxx Last edited by Jeannine on Thu Mar 02, 2006 1:28 pm; edited 1 time in total
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Gina Joined: 29 Mar 2005 Posts: 9	Posted: Thu Jul 21, 2005 1:22 am    Post subject: Stool test Hi Kristi, Highly recommend the stool test from Enterolabs. Just had my son tested and it is so easy to do. Good luck!!!
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