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Williamsmom

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About Williamsmom

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  1. So I should get a bone scan and nutrient levels. Which nutrients? GI is testing for b12 deficiency and folate. , I'm giving him a multivitamin, but I don't know if that is enough. Thanks
  2. Thanks for the replies and information. We did have him tested for mono 4 months ago and they are testing him again now. I'm going to make appt with rheumatogist and see what happens with his blood tests they are running.
  3. My 13 yo son was tested 4 months ago. The test came back with very high numbers for celiac: Deamidated Gliadin IgA 105 & IgG 154; t-transglutaminase IgA >100 & IgG 8, Endomysial Antibody IgA positive. Pediatrician was amazed at how high the numbers were and GI called them very impressive. They followed with endoscopy and biopsy that was positive for celiac . We were completely unfamilar with Celiacs disease and the rest of the family tested negative including his twin brother and 2 other siblings. Strangely he has never had any GI symptoms. He is quite small for his age, but so is his brother and father. His symptoms were fatigue, back pain, sore throat and general malaise also affecting his ability to function well in school. Doctors said all this was related to celiac. I asked to test for vitamin deficiency and/or for referral to nutritionist and told it wasn't necessary. Doctors referred us to a website and said go gluten free! Fast forward four months and his symptoms have only improved marginally, although he did gain about 7 lbs. We are gluten-free and my son has been super vigilant- bless him. He really wants to have the energy to go back to playing sports etc. I've gotten calls from other moms, "Is it true that your son can't eat a burger if it just touched the bun?" Back to GI today who said he would do blood work to check, but that his symptoms do not appear to be related to Celiacs disease. I guess 4 months ago they were all so excited about the 'amazing' numbers they weren't listening to us. Doctor says he has Celiac, but probably just asymptomatic. Doctor thinks we should see Rheumatologist and Endocrinologist. So now I am wondering what the.... Could these test results have been a mistake? But I thought endoscopy was definitive although I don't have the actual biopsy results in my hand (going to request a copy asap). And I still have a sick 13 yo boy. Does anyone know if fatigue, back pain, sore throat and inability to concentrate in school could be related to Celiac. Should I go to Rheumatologist? We live an hour from Columbia Univ Center for Celiac Disease. Thinking of just taking him there for some definitive answers first before I get back on the doctor carousel. I would appreciate any advice or feedback. Thanks!!!