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bear6954

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Everything posted by bear6954

  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...
  16. bear6954
    When my son was that age, he would have mucas in his poop a lot. His poop was also acidic and burn his bottom. He had constant diaper rash. As he got older and ate more gluten, his symptoms got worse. I was looking at pictures of my son when he was about that age and my son was real chubby. However, his stomach was very large at that time. My son also...
  17. bear6954
    Looks like my sons did before going gluten free!
  18. bear6954
    I was very lucky. When my sons liver panel test came back extremely high, we were sent to a Ped Gi specialist the following week. He took one look at my son and told me he had celiacs and this was prior the the dna results. Our GI dr recommended the scope. I did not want to do it! However, I am very glad I did. Otherwise we might still be guessing....
  19. bear6954
    My son had the same symptoms as yours when he was 2. His celiac panel was negative, positive for both DQ2 genes, and very positive biopsy. My son had the bloated belly, lots of mess bowel movements also. My son quit vomiting in the mornings after 1 week of being gluten free. My son would not vomit every day, but a few times a week. It did not seem to...
  20. bear6954
    At 23 months, my son was considered failure to thrive, short stature, and malnurished. My son had 6-9 messy smelly diapers a day, vomitied at least 5 times a week, really grumpy and had a huge belly. He has classic severe celiacs. All of his blood work came back negative. We opted for a biopsy and is was very positive. At his 1 yr celiac check up Ray...
  21. bear6954
    My son is now 3. He was diagnosed with celiac via biopsy at age 2. At that time, I told his GI dr that I was still nursing him down to sleep. He told me that gluten does not pass into breastmilk. Fast forward 1 yr. We go in for my sons 1 yr gluten free check up. My son has been 100% gluten free for 1 yr. (This occurred in Feb). My sons liver was ...
  22. bear6954
    My sons gi dr was able to tell us after the biopsy that he was positive. He was able to see it when he did the endoscopy. His gi dr still looked at it under the microscope and called up back to follow up in about 7 days.
  23. bear6954
    My son was diagnosed at 2 yrs old. He also would throw up in his sleep - just sit up, throw up and go back to sleep. Just recently, he would be playing, throw up a little, and go on like nothing happened. My son has acid reflux and once the doctor put him on prevacid (about 3 weeks ago), no more juicy burps, throwing up in bed or throwing up when playing...
  24. bear6954
    Good luck! I hope every thing works out for you.
  25. bear6954
    I am sorry to hear that things are more confusing than ever. I started to keep a log of my kids meals, drinks, poops, dates, times this occurred and what the poops looked like - etc to figure out what was going on. My son has issues with sugar and dairy. He can handle kraft singles, but yogurt give him diarrhea. Juices really bother him. He drinks crystal...
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