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tkseeley

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About tkseeley

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  1. First off, I apologize - I am sure you all probably hear lots of stories like mine and you may be tired of answering newbie (potentially) questions. I don't need much, I just need to hear from those of you who have been through it. I'm so exhausted of dealing with doctors and the unknown that I may rip my hair out. Ok - here's the story (compressed, of course!) My son has huge - 98% in height and weight - until age 2. Then he just stopped growing. He was never hungry, but I still made sure he ate 3 very healthy and hearty meals a day + 2 snacks. Then the tummy pains started and the behavior problems. He's been tested for all kinds of physical and behavioral problems and every single time everything comes back with "I don't know". He's now 6 (almost 7), 40 lbs, very poor muscle development, doing poorly in school despite having a high IQ, and he's missed several days because the nurse has called saying he's had a bad bout of diarrhea and he's crying from tummy pains. In august I started pushing the pediatrician to find out what's causing the problems. We tested for every allergy and everything came back negative. I'm not sure exactly WHAT was tested, but he said he was negative for celiac. Stool samples are clean. His bloodwork DID show high EOSOINOPHILs and high liver enzyme. TWO repeat blood tests (3 total over 4 months) showed the same result, so we were referred to a gastro. The first thing the gastro said was "Celiac" but after looking at the blood work, he said, no. We were told to avoid fructose and sorbitol and keep a food diary. We repeated bloodwork and were to come back in March. Blood work - EOSOINOPHIL - .71, Carbon Dioxide - 29, Sed Rate - 22. Everything else, including IgA is normal. The doctor says, "Eh, we'll see you in May". I'm going crazy. I'm tired of cleaning poopy butt, poopy undies, having my 6/7 yr old scream in pain... So I email the gastro and ask if we can just go ahead and go the endoscopic biopsy but he's not willing yet. I got mad and asked him if we were just going to keep repeated the same darn bloodwork that's been the same since August (now 4 times total). So what do I do? Should I find someone who will do it? Does he sounds celiac-like? Any quick advice would be fabulous. Thanks you in advance!!
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