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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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