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bear6954

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Everything posted by bear6954

  1. bear6954
    being put under is much better than sedation in young kids. The worse part is withholding food and drink at midnight. The whole procedure takes about 30 minutes or so. My son was 2 when he had his done. He does not remember it and I was a wreck. But since the blood work was negative, I needed proof of what was wrong. After the procedure, we waited for...
  2. bear6954
    I did the same thing as Hopemom. My son only grew 1 1/2" between the ages of 1 and 2 and went from the 50% tile for growth to 0. My sons ped gi said he had all the symptoms - enlarged stomach, liver enzymes through the roof, the bid D - about 9 a day, throwing up at least once a day, failure to thrive etc. His blood work came back negative for celiacs...
  3. bear6954
    My son grew after going gluten free - 5" but he only gained one pound. In all reality he lost weight. He is not on the growth chart. He also has EE and refuses to eat meat. We just had blood work done and his liver enzymes are through the room still and the ultrasound showed his liver at 13 cm (the size of an adults). He has also become hypoglycemic...
  4. bear6954
    My son is on EO28 Splash. It is for children who have issues getting vits the normal way. The box says its for kids ages 1-10 who have GI impairment, EE, reflux, short bowel syndrome and other medical conditons for which an amino acid based diet is required. Its hypoallergenic and gluten and casien free. My sons dietation recommended it because my son...
  5. bear6954
    If your son is only 6.5 months old - his gut probably will not be able to digest that stuff because he is so young and his intestines are not ready for it. By pure luck, I did not introduce wheat, rye, barley (by food) into my sons diet until he was 1 yr old. He did get gluten from my breastmilk which resulted in the poop issue. I used easy to digest food...
  6. bear6954
    I gave my son iron supplements at first, then I switched to cooking all food in cast iron. He has not had a problem since.
  7. bear6954
    Have you had your son the his dr recently or to a GI dr? My son had classic symptoms, but it took almost a year to get diagnosis. His blood work for celiacs was negative at age two, but dna positive and positive scope. He always had the bid d - very messy, smelly and burned his little bottom so bad. He started throwing up daily about 4 months before diagnosis...
  8. bear6954
    For anyone in Jacksonville, NC, White Oak Bakery makes gluten free cakes and cookies. You need to call and special order and they are expensive. However, I got a gluten-free cake for my son and it was wonderful. He was so happy to eat cake with everyone else. It brought tears to my eyes!
  9. bear6954
    I will do that. I know they pulled a bunch of blood work on Ray, but I don't know if they checked his iron levels. I cook everything in cast iron and he gets iron in EO28. He is a very picky eater and mostly eats whole grain rice pasta. I will have him tested and see if we need to add other supplements. Thanks a ton.
  10. bear6954
    At the end of Feb, we went for my sons 1 yr check up and found that this liver was 13 cm and that he had non fasting hypoglycemia (51mg) and liver enzymes were 700 and 1400. He grew 5 inches but only gained one pound, so he actually lost weight. He is the size of a two year old and is not on the growth chart. We started him on EO 28 Splash and he is doing...
  11. bear6954
    I have a cook book called "You won't believe it's gluten free!" by Roben Ryberg. This book is made with single ingredients - rice, corn, potato etc. It has everthing in the book and it gives subs for dairy. It has snacks, meals, crusts, cookies, bread etc. I have not interest in selling of the book, it happened to be the first cook book I picked out...
  12. bear6954
    My son also tested (and still does) negative in blood for celiacs. He is DNA positive with DQ2 and a very positive biopsy. He was 2 when diagnosed and had classic symptoms of celiacs.
  13. bear6954
    Before my son was diagnosed it seemed like every cold last 4 weeks instead of two and turned into ear infections, strep and scarlet fever, or lung issues. He lived on nebs from 1 yr to 2 yr every time he got a cold. It seemed like every time he got sick - he got real sick and was on meds. After going gluten free, his colds seen to last no longer than my...
  14. bear6954
    I had a real hard time with our family. We did not have a lot of family support - they thought I was nuts and over protective of ray and thats why he cried all the time. Now, everytime we were around them ray gets glutened. I finally got mad and explained that they were piosoning my child and that it had to stop. We now only eat at the table, so I can...
  15. bear6954
    When you see the nutritionist ask about EO 28 Splash. It is an amino acid based formula -grape, tropical fruit and some other flavor. It is really easy to digest and is gluten and casen free. It is made for kids with severe gi track damage and ee. It has good calories, and if used as a supplement gives all the vits, protien, carbs, fat your son will need...
  16. bear6954
    Tylenol is digested by the liver and Motrin is digested by the kidneys. If you have liver issues its best to stay away from tylenol and use motrin.
  17. bear6954
    by the way, i have been gluten free for about 2 weeks now and I believe my son is no longer having night fevers!
  18. bear6954
    My son had his seizure at 18 months and he was not diagnosed until he was 2 yrs old. August he had his seizure. October started the projectile vomiting several times a week. He has always had 5-9 really messy stinky diapers a day. From october -jan we went to the doctor every other week because I knew something was wrong. WIC tested my son for anemia...
  19. bear6954
    My son was in my husbands arms when it happened. I hit construction barrels to get to the er. He passed out cold and then slept for 3 full days. I could not get him to wake up for more than 10 minutes he would just lay there and moan. On top of that we were on vacation in Michigan (we live in NC). I took ray to my old family dr and he said that ray could...
  20. bear6954
    My son had a one at about 18 months - before being diagnosed with celiac. We took him to the er since we were in the car and his temp was 103.5. My son was diagnosed with an ear infection. Before my son was diagnosed with celiacs he would have unexplained fevers that would last less than 24 hours but you could tell he felt bad. My son also has night fevers...
  21. bear6954
    Does your son choke on food or throw up when he is eating? My son did that and the things you mentioned - still does chew food and spit it out. My son has eosinophilic esophogitis. Its swelling of the throat that is not life threating in most cases. It makes it hard to swallow and when he does good gets stuck in his throat. The only way to get a correct...
  22. bear6954
    My son also needed iron and I gave him a supplement for a while. After 3 months he was good. Now I cook everything in cast iron and have not had to use a supplement on him for that in about 9 months. His blood work came back last week and his iron was good!
  23. bear6954
    My son had the same symptoms as you listed when we was just about 2. His blood work was negative at that time. We did a DNA test and he had both sets of DQ2, so he is very positive for celiacs in that manner. We had a biopsy done because he was not growing etc and it was positive also. Once we went gluten free, the vomiting stopped at once and the diarrhea...
  24. bear6954
    I remember reading somewhere that gluten was not absorbed through the skin. So I allowed my son to play with playdoh two days in a row. I watched him both times - he did not eat it. I washed his hands, cut his nails, scrubbed his hands and arms again, changed his cloths and cleaned the entire area. He still got glutened. My neighbor even noticed. His...
  25. bear6954
    Young children can test negative for celiacs by blood work. My son was negative by blood, positive DNA and positive biopsy. I DNA tested the rest of the family through our primary care manager. It was a cheek swab and easy to do. Its expensive, but noninvasive.
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