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bear6954

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    bear6954

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    jacksonville north carolina

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My son was diagnosed with celiacs by bioposy in May 08 when he was two. He was DNA positive, but negative for blood work. I have been trying to find accurate information on children with celiacs and other people who have children with the disease. I live in a small community and do not have a support group locally. Its nice to find other people who are dealing with the same thing I am.

  1. bear6954
    Yahoo groups has a support group for EE - eosinophilgastro is the name of the group. Kids range from severe to mild symptoms. Some drs do meds first others do elimination diet.
  2. bear6954
    My son also has hypoglycemia. His morning fasting blood sugar was 41 and 46. I started two thing for him and it has really helped. My son is 3, but we started him on a amino acid/elemental formula that is easy to digest and full of vits, fats, carbs, and minerals. I also wake him at 2 am and feed him something small. He normally eats about 5 bites of...
  3. bear6954
    My sons celiac panel blood test was negative, but his liver emzymes were through the roof. We got a referral to a ped GI dr and just by looking at rays body and what was happening he dx him with celiacs. We still did dna - positive and positive biopsy. Once we went gluten free almost all of the pooping and rashes went away. Now, if my son eats too much...
  4. bear6954
    When you can find time google glycogen storage diseases - its a metabolic disorder.
  5. bear6954
    Could it be acid reflux? My sonw as gluten-free for 1 yr and started to throw up again. Not huge amounts, but at weird times - like play group. It never really bothered him. He would also throw up at night. He first went on mylanta and then we switched to prevacid. I still watch him when he drinks or eats a lot at one time. But so far, on the prevacic...
  6. bear6954
    My son was completely negative on all celiac panel tests also. However, he had the classic gi symptoms. He was positive for DNA and positive biopsy. My son only gre 1 1/2" between one and two. Once he went gluten free, he started to grow and teeth again with a month or shortly after. I began to measure my son every month so I could keep track of his...
  7. bear6954
    My son was tested for this a few months ago. At dinner, he would vomit his entire stomach that contained food from breakfast. His test showed boarder line slow emptying and boarder line acid reflux. My son only ate one egg and 1 oz of water. I knew he had acid reflux even if the test did not verify it. We put him on prevacid and I have not had a problem...
  8. bear6954
    My 3 year old son went for his 1 yr gluten free check up. At that appt, his liver was 13 cm - confirmed by ultrasound. His enzymes were 790 and 1420 (not sure which was alt/ast). We had a live biopsy done on April 3rd - biopsy shows scarring of liver not as a result of celiac disease or hepatitis. They think he has glycogen storage disease and we are...
  9. bear6954
    We dont eat pp and j here, but for the butter - I do most of the cooking and if I need to use the butter for gluten stuff, I take a big chunk out of the container and put on the plate. I do not double dip. My sons gi dr told me that his liver was not functioning correctly (hense the increase liver emzymes) because he is malnurished because of the damage...
  10. bear6954
    He will also eat Ians chicken nuggets and french toast sticks.
  11. bear6954
    My son is still having issues of cc. I know he is not eating any. We are pretty careful - trader joe organic brown ric noodles, verified chicken stock is gluten-free, pamelas products, oscar mayer hot dogs, gluten free pantry bread, smart balance, Kirkland brand organic soy milk, gerber rice cereal, and enjoy life cookies. My son is not having the issues...
  12. bear6954
    Ok - I have thrown away all plastic plate, bowls, colenders etc. We use china, glass, metal or cast iron now. I clean the table, counter and anything else with soap and water. Is there anything else I should be doing to prevent cc in our house. I do not bake with gluten products, but my hubby and daughter eat gluten foods. Thanks for the help!
  13. bear6954
    esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.
  14. bear6954
    Yes it is an auto immune disease that attacks the small intestine causing damage and inflammation.
  15. bear6954
    My son was 2 when he went gluten free. Prior to that, his main foods were ravioli and spago's. He also liked cheese its, wheat thins, fruit loops etc. For several months, I could not walk down those isles without crying. People prob thought I was weird. But I guess I was sad because my son could not eat the foods he loved. However, now, I dont feel...
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