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About dreamindarlin

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    My kids!!!
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    Asheville, NC
  1. My son is only 6 and he was diagnosed as well by an endoscopy......However all of his blood test/markers have been negative for celiac. We have been on the gluten free diet for over a month now and he is no better......he is still having bloody diarehea, losing weight, severe stomach pain. His doctor told me he was "shocked" that his biopsy came back positive for Celiac's and lets try the diet to see how things go. He also said it could be some other things but he didn't want to "overwhelm" me right now. He is up at night with pain and I called and he goes in a few minutes back to the doctor. I am anxious to see what his new blood work shows and the bone scan results. I think he will order more test but who knows? We have a appt in NY at the Celiac Center on Nov. 6 for a second opinion but it will be such an expensive trip I don't see us making it there now. I will probably get him an appt at a big city (closest one is about 2 hours from me.) I would suggest a 2nd opinion. I've read and read books and internet articles. A positive biopsy is conclusive of Celiacs Disease IF the blood test backs it up and the diet is working. However having a biopsy that suggests Celiacs there are also other causes that can mimic that on the scope. Hope this helps.....
  2. Hi, Many of you know we have scheduled an appt for our son in NY on Nov. 6th at the Celiac Center for a 2nd opinion. I just got off the phone with a nurse from there and she said to stop the diet? She said he has to eat a normal diet for at least 2-3 weeks before he comes. Now I'm concerned what if he gets really sick? We arent 100 percent sure if he has this disease.....all blood tests and repeated blood test say no but the biopsy said yes. However since he got out of the hospital and started the diet he is still having bloody diareahea and stomach aches. I'm terrified that will get worse and he will end up back in the hospital. On the other hand I guess it will tell us if the diet is helping at all or not? I'm just not sure what to do???
  3. He tested negative for all 3 blood markers on two different occasions. He is better than he was in the hospital but if it was a bug he would be right? He still complains of stomach pains and we have been doing a strict gluten free diet since the 16th. So he is the same as before he went into the hospital. He does have a new symptom........hip pain? He says his legs hurt. But he points to his hip....?
  4. I wanted to add that we don't have alot of money........we are barely scraping by. My husband says we owe it to our son. This is a life changing-life long illness and we just need to be sure. I've read and read and so many have been to doctor after doctor with problems unil they were diagnosed with Celiac's. This is not the case with us. I took my son to doctor and was told he had a virus or early appendicitis and to watch him. When he threw up blood I took him to the ER and after a CAT scan diagnosed him with intussesseption. We spoke briefly to a surgeon and they admitted him. His fever and diareahea and vomiting blood lasted over a week. We came home had a follow up appt and they said the biopsy was positive for Celiacs. Before the hospital stay he was pretty healthy. Stomach aches from time to time like all children but that was it. Which is why we want a 2nd opinion. I'm wondering if there are others that have been misdiagnosed? If after the 2nd opinion they say he still has it.......then I will accept that. It's hard when he asks me for something and I have to tell him no. He's only 6 and just doesn't understand, he thinks mommy is being mean.
  5. Wow! I was told Dr. Green only sees adults....we have an appt. with Dr. Kazlow at the Celiac Center. And I've spoken with them on several occasions. We are so lucky that they accept our insurance so we have to pay a 50 dollar copay. We live in the middle of nowhere lol. Asheville, NC. We have a total of 2 pediatric gastro doctors and they are in the same practice together. The nearest big city is Charlotte NC and there is no celiac center there. I've read articles by Dr. Green and he knows his stuff!
  6. Well my son was diagnosed about 2 years ago. I'm not sure if it is related to Celiac's or not. We are still unsure if our son even has Celiac's. But I'm intrested to see what others have to say.....
  7. My son was diagnosed with ODD (Oppisitional Defiance Disorder) about 2 years ago and were told he has some developmental delays. He is in 1st grade this year. My child lies alot and used to have tantrums where he would try and hurts his self. (Bang toys or anything on his head till it was bleeding) When he started Kindergarten he improved almost 100 percent. As far as the accidents my son still has them an average of 1-2 times a week. He doesn't realize he has to go until he feels it in his underwear. We are dealing with this as best as we can.......what else can you do? Your son does sound VERY small 7 years old and 34 pounds? There is something going on. My suggestion is if you aren't getting anwers/test from his pediatrician...it is time to find a new doctor. Does he complain of stomach aches alot? Any rashes?
  8. We have been following the gluten free diet since the 16th. Boy it has been tough!! I have done more research and reading in the past couple weeks than I think I have done in my life! Did you know there are other problems that will mimic a positive biopsy other than celiac's disease? Bacterial Infections, Helicobacter pylori infection, lymphoma, autoimmune enteropathy. However if you have classic celiac type symptoms, a positive specific antibody (anti endomysial or transglutaminase antibody) and a positive response to a gluten free than celiac is the likely cause. The likelihood is further increased if you carry one or both of the two major genes DQ2 and or DQ8. You can read more at http://Spammers Use This To Link To Spam.com/?Celiac-Biopsy-Ex...y&id=315570 We are seeking a second opinion because my son doesn't have the typical symptoms nor does he have any blood markers or the gene. Sooooo was wondering if anyone has been to this place in NY? They have an awesome website and great reviews.
  9. I googled gluten free candy and found a list. Be aware that it is from last Halloween so things may have changed. I will double check all ingredients. http://www.celiaccentral.org/SiteData/docs...October2007.pdf If you scroll to the bottom they have some great ideas about the gluten free candy your child can't have. My favorite is the "Pumpkin Fairy". Leave all candy containing gluten on the table before bed and the fairy will come take it for herself and leave you a nice surprise (toy)!!!
  10. Any ideas for Halloween? What's the best way to go trick or treating? I've been looking at candy and trying to find out which ones are gluten free. But kids get such a variety on Halloween....I'm kinda stumped on what to do.
  11. We went to the store and bought some of the beef stew. I also bought the Chebe pizza dough stuff........making it now hope its good!
  12. They have a huge list of gluten free foods ....ham and scalloped potato, chicken and rice, etc.
  13. I was browsing through Hormel's website and Dinty Moore Beef Stew is listed as Gluten Free.......just wanted to make sure????
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