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Worriedtodeath

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Everything posted by Worriedtodeath

  1. Worriedtodeath
    HI! I didn't know where to post this but does anyone know anything about those bubble wands that come in a long bubble solution tube? My silly received one and of course they cut off the name and contact info to wrap it. I only have marketed by Wal- mart stores made in china and the code wmp60036b on it. I couldn't find it on Wal mart's site. Thanks...
  2. Worriedtodeath
    I have to second this. While we have recovered, my daughter's development still lags. She lost so much SO VERY MUCH. We gave digital photo frames to the grandparents for Christmas loaded with picts from the last couple of years. I cried thru them. The obvious change when being flipped by you in a matter of seconds - you go from that happy, fat smiling...
  3. Worriedtodeath
    I didn't refuse the biopsy and I should have. All it did was come back with a negative and 3 drs arguing over what might be wrong with my child. When before the biopsy, all involved were 100% positive it was Celiac and would come back positive. Her damage was not enough to qualify and was slight enough to be caused by a possible milk allergy (even though...
  4. Worriedtodeath
    If I remember right (the label wears off and I can't read the name ) it is ZUZU Open Original Shared Link expensive UGH Long lasting Good Sometimes clumpy but I can fix that . Wears well and stays on my eyelashes and not my face. Now get it at the local Earth Fare store.
  5. Worriedtodeath
    Please be advised that it may take months to feel better or get well. I wanted to say that so you don't get discouraged if you don't feel better in a few weeks. My baby became very ill and still tested negative on blood and biopsy. My mom told me I was like that as a child. Clingy, whiny, grumpy, sick, tummy problems all the time. Identical to the baby...
  6. Worriedtodeath
    HEre's what we had to do. Background - my 12 month old stopped growing and had continually worsening diaherra. I had a ped with a clue about Celiac but surrounded by specialists without a clue. Since we used an allergist with the oldest, I went that route first. First thing the allergist wanted after initial IGE testing was to get back to a normal...
  7. Worriedtodeath
    Well, our blood work is negative ( there are a percentage of people who will not test positive and I'm not sure if that puts the blood work as unreliable or what) so I can't depend on it to let me know if we ingest gluten or not. I switched because of that. I also switched because of the toddler who likes to drink the bath water, lick her fingers or people...
  8. Worriedtodeath
    My kiddo was extremely pale as well. The cbc is not a blood test that lets you know if there are deficiencies nutritional wise. I had to demand a vitamin test and a couple of other ones Her cbc was fine. Her Vit d was in the toilet along with Vit k, A, and calcium and I forgot what all else. It's taken months but her paleness is no longer that deathly...
  9. Worriedtodeath
    Agree with Shayesmom! Great post. We jumped through all sorts of hoops with our baby only to discover that playdough used in her classroom during the week was making her sick on Sundays. PLAY DOUGH she didn't even play with!!! And wasn't even in the room at the same time she was. UGH!! Flour bins, oatmeal, cereal..... I would be firm but clear....
  10. Worriedtodeath
    never even saw that!!!!! That may explain some things. Soy cheese and heavy soy products upset her stomach but i never paid attention to the almond milk ingredients for soy. Thanks for pointing that out. Stacie
  11. Worriedtodeath
    Just wondering if anyone uses these products?? www.purelifesoap.com They don't say gluten free or wheat free but they look okay other than some that use wheat germ. I'm just concerned over the "organic and vegatable source" I emailed and the company was very prompt and very nice and after a couple of emails, said they were in the process of tweaking...
  12. Worriedtodeath
    Okay the soap stuff totally mystifies me. What are the bad ingredients? I look at the bottle and nothing screams wheat. I didn't think about using the soap at places. SHe still likes to lick her hands. So some of those chemical names are code words for wheat? Here at home we are suave for kids shampoo (I thought Sauve was safe), equate brand...
  13. Worriedtodeath
    The class knows about the glue and paint and playdough. However, we have been using those stickable foamies. Peel the sticker off and stick it. Hadn't even thought about that. I'll have to see what the "sticky" is made from. As for playdough, mine absolutely cannot under any reason even be in the same room with it (or so it seems) If you have a wheat...
  14. Worriedtodeath
    She was checked for tree nuts and peanuts. All clear. Is almond a different test?
  15. Worriedtodeath
    Forgot to add we are also dairy free and only use Almond milk by blue diamond. I'm pretty sure they have no gluten. We do an occasional cheese pizza since soy makes her sicker than the milk does but that is rare and any issues from that is a one time deal. Not ongoing like this has been. Stacie
  16. Worriedtodeath
    HI! OUr dd is now 2 and is in the midst of a bad bad gluten reaction. Horrible runny poop. We've done great with just a few instances in the beginning since our dx (or lack of one ) in Jan. But this is definitely like she was way back before dx leading me to believe we are getting regular gluten somewhere in the last month but I can't figure out where...
  17. Worriedtodeath
    HI!! Don't relay on the tests for kids. My baby would not have made it had I continued to follow the drs advise and orders. I cancelled all medical appointments for two months, put her on a strict fruit, plain meat, and veggie diet and went back with a detailed food diary recording everything from bms (I took picts on some just for verification )...
  18. Worriedtodeath
    Thirsty little ones here too. I make juice from those cans of concentrate. I mix it up one can per gallon of water. You might could try that. Maybe do the actual mix first , then each time water it down some more until you get to the gallon per 1 can concentrate. Stacie
  19. Worriedtodeath
    Crazy question but did you see the actual surgical path report or the dr's interpertation of that report?? They can be vastly different. The path could have done the biopsies wrong or been a dope himself as ours was. I can't get the dr to order my daughter's biospy to another lab even though we know the path only looked at 1 sample and never examined the...
  20. Worriedtodeath
    Dx with Ibs at 14, dx with fibro at 22 after a huge weight gain in virtually a few weeks and crippling joint type pain symptoms. After putting everyone on a gluten free/dairy free diet 5 months ago to solve the baby's issues with gluten have had virtually complete diappearance of ibs, joint pain, muscle fatigue, extreme chronic fatigue. Never been dx with...
  21. Worriedtodeath
    HI EVERYONE!! I thought I would pop in!! I haven't been posting much here (do I lose my cult status?) but do I gain it back if I place 3 orders in one week? Two in the same Day!!!!! Little bitty orders though. I only placed one to get the special and just took the discount on the others. Once they all arrive, I will have the majority of the eyeshadows...
  22. Worriedtodeath
    The gi isn't going to tell you to take him off of gluten without a positive biopsy and blood unless your baby is in the hospital dying. Hate to be dramatic but I've been there. My child couldn't speak, did nothing but scream and went from bad to worse. The gi even said he had never seen someone get so sick on a gluten challenge so quick but still refused...
  23. Worriedtodeath
    How long has he been on gluten? Has he ever gone off of gluten? This sounds so much like my baby. All of her testing came out negative but we did the diet and within the week the runny poop stopped. Within the month, she started gaining weight. Now after 4 months, she has grown and gained weight. Her gi dr wanted us to continue to feed her gluten for...
  24. Worriedtodeath
    If he's been gluten free for several months, the test will come back negative. If he's been lite gluten or has been getting a little thru cc then it might show some antibodies but will probably still show neg. Your best bet is to continue on the path of gluten free. You will have to put him on a heavy gluten loaded diet for a minium of 3-6 months to even...
  25. Worriedtodeath
    I would stick with natural fruits/veggies for a long time. There is a yahoo group called silly yaks that has lots of kid recipes on it icluding gold fish crackers. You could make your own teething biscuits. There is a cheerio sub called Perky o's. We make lots of cookies and i even just made a cookie cake that a little one could probably gum. Leave out...
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