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Another Positive Test
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2 posts in this topic

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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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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    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
    • Yeah I actually live in Japan which is pretty similar, because Coeliac disease is rare over here so is the understanding and accommodating it. When I mention Gluten to some restaurants they think I am talking in English and they are unfamiliar with the word in Japanese.    So it seems I can write off my chances of getting some authentic Chinese gluten-free food at the airport, but at least there is a Thai restaurant in T3 so I won't starve. Its called  'Phrik Thai' for future reference. http://en-shopping.bcia.com.cn/store/739.html  
    • While in Boston I found Cheer's  Bloody Mary mix that says gluten-free on the bottle and have had no issues and  tastes pretty good 
    • I always assumed plain coffee was, but I have seen some controversy online about this. I know someone who is gluten free and only buys whole beans and grinds them herself because she doesn't trust how the grounds are processed.
    • I have confirmed that Member's Mark Ibuprofen are gluten free in three ways: the list of ingredients matches the list of gluten-free excepients from the Gluten Intolerance Group's list, I called the customer service number on the bottle (they confirmed it is gluten-free), and I found another website in which a dr claims it is gluten-free.
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