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Another Positive Test

SprueCrueNTX

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SprueCrueNTX Newbie
SprueCrueNTX
Posted

My 14 1/2 year old daughter has severe celiac (was diagnosed almost 2 years ago with an anti tissue transglutaminase of >250 with normal range less than 20) She was really sick needless to say. At barely 13, she weighed only 74lbs (the doctors felt she was merely growth delayed...I had her to two Endocinologists). She was tiny, hadn't matured, and we found out finally through labs she was horribly anemic with a serum ferritin level of nearly 0. It was not good. We took her immediately to a Pediatric Gastroenterologist at that time and she suspected either Ulcerative Colitis (as I have it) or Crohn's Disease with an active bleed. She decided to throw in a Celiac panel for the heck of it. Imagine our surprise? I had never heard of it. Let me further enlighten y'all....we are of Irish descent (hmmm), my son has Asperger's, we won't discuss the ADD in the family (too numerous), my mother has chronic "IBS" as does my grown daughter..... So did I (along with my U.C.....poorly managed with meds, I might add). Turns out I was diagnosed by blood test and bx this year too with Celiac disease. I am doing well on the gluten-free diet. But back to my daughter... We started her on the gluten-free diet and also Ferlecet (sp?) infusions for her anemia. Turns out she also has Alpha Thaalasemia. After 8 infusions, she did great. She has gained weight and is now 100 lbs and looks healthy. Her CBC looks great. Whats the problem? I took her in last week for a follow up anti-tissue transglutaminase and it came back yesterday at 39...still abnormal. So she's having indiscretions. We are 100% gluten-free here at home. I have talked to her about health complications til I'm blue in the face (as I am under treatment for osteoporosis at 44 for untreated Celiac) and that's a minor problem in comparison to others i.e. cancer, etc... I think I sound like a broken record. We go to see the G.I. next week and my daughter really likes her. And I know she's sick of the disease too and frustated. I've thought about getting involved with bringing "Making Tracks for Celiac's" to our hometown and getting her involved too. I know she gets fed up with people not knowing about it and having to explain it to people over and over and over.....like the cafeteria ladies and what designated oil is and isn't...and would they puh-lease stop putting rolls on her plate!! I know how she feels....probably about the same way when at work when they offer you cookies and you say "Oh, I can't have that." and they say, "Oh, take just one." <sigh> It's just easier to say you're allergic and save yourself the time. Anyway, anyone have any suggestions for a frustrated teenage Celiac and a tired Celiac parent? Thanks for the ear and the shoulder......

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flagbabyds Collaborator
flagbabyds
Posted

I'm 13 and my e-mail is flagbabyds@aol.com and i was dx w/ celiac disease when i was 20 mnths so if she has any ?'s she can e-mail me

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