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gypsyrosenfmommy

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About gypsyrosenfmommy

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  1. So a bit of an update for everyone. I took DS off gluten since I posted this. His belly has gone down DRAMATICLY and his skin is clearing up some. He still bloats like this down from time to time and he still has a SMALL constantly bloated belly but NOTHING like before. I know lactose intolerence and Celiac can be an issue so I am going to try and keep him on almond products and coconut products. I will try and get a picture up soon of how his belly is improving. Still not great but better.
  2. I He is my handsome little man. He is hard headed just like me and looks just like his father. I agree he looks like a poster child for the illness. His belly gets even worse than that. There are times at night he just cries and cries though not so much anymore. When he does I give him a warm bath and then lay in bed with him rubbing his belly. I found it helps get the gas out. This is a better picture of him. It took me a YEAR to get him diagnosed with NF AFTER I had already been diagnosed. The doctors where i just moved from NEVER told me even why my oldest started having seizures out of the blue! I am hoping now that I am close to a REALY good hospital I can start getting answers. Clean him (His name is Arlo) and messy Arlo LOL (he had just eaten dinner at his grandmothers) They wont referell until they see him I have been fighting for a long time to figure out why he bloats so bad.
  3. We just moved. The soonest they can get a new patient in is 2 months . Yes a nero follows NF. He has already had his yearly exame 3 months ago.
  4. The problem is getting a referance to a pedi GI. My old pedi refused to do it. (So glad we moved!). Insurance wont pay and the pedi GI if there is no referral.
  5. I agree 100% that something just is not right. He also has Neurofibromatosis type 1 and I know it's slightly more common in people with it than a "normal" person. I feel like ripping my hair out sometimes. All the Drs i have spoken to besides his old alergist seems to think I am over dramatizing it because he is growing right.
  6. Last year DS wsa 2 years old. He was tested for celiac (it was a basic test and did not do the DNA test) and it came back negative. He was tested by his Pedi. I honestly still feel he has it. (or that and something else is going on) He bloats SOOO bad, has gritty poop, he is VERY irritable (the slightest thing bothers him), his skin is very dry and he gets chicken skin. He has had cases of dihareha so bad that when he poops it leaves his diaper and covers the floor (this is uncommon but has happend a few times). He gets VERY gassy and lets out toots so strong you can feel the floor shake a tinny bit, he has a chronic runny nose (started at a week old), dark circles around his eyes (at a very young age before age 1 he got these) to the point he looks ill often. I am just at a loss. His test was a blood test. I am TRYING to convince my husband to remove ALL gluten from the house. (we have 5 kids total so this will prevent any chance of him"accidently" getting some). I also have bad bowel problems, and dark circles. (when he bloats his pants will NOT fit!)
  7. If my son has celiac will we have to remove all gluten from the house? I hear many people do.
  8. My 2 year old just had blood drawn for a comprehensive test. We should hear back tomorow. He gets very bloted, gassy, has diareaoften, wakes up with gas pains crying and very foul poops. I know they say 25% of people with our geneti disorder (nerofibromatosis) has it. I also have bowl issues. Such as i often have mucus in my bm. Often that is all i poop is mucus. What are the chances of a false negitive for a comprehensive celiac test? Does it sound like celiac?