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ryebaby0

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ryebaby0

  1. ryebaby0
    My son is still dairy-free and we've been using RiceSlice, which comes as "american" or "mozzarella". It tastes good enough to eat plain, and we can find it in our grocery store (Wegmans) in the alternative foods section cold case.
  2. ryebaby0
    If she takes the calcium with oj, that will help a little, but really her doctor should test levels. A low zinc level (which is likely with malabsorption) will really slow down growth; Patrick took zinc for almost 4 months! Iron, folate, potassium -- make sure it's a multi with minerals, but a "regular" vitamin just can't make up for certain deficiencies...
  3. ryebaby0
    My son was dx with celiac (which rules out dairy for the time being) and in hospital we discovered an egg allergy as well. He is 10, however, which makes it a little easier. On a typical day he eats: gluten-free cinnamon toast, or EnviroKids Gorilla munch, or gluten-free toaster waffles and maple syrup PLUS a serving of some fruit and a glass of Pacific...
  4. ryebaby0
    Well, his strep test was negative (at least so far) so I guess it's somethings else!
  5. ryebaby0
    Yup, that's what I thought too. His older brother was at the doctor about 10 days ago, but his strep test was negative.... I guess we'll find out tomorrow. My son is immunosuppressed so strep would be a really bad thing...
  6. ryebaby0
    Patrick was complaining about a sore throat, so I looked....He was just at the doctor's Thursday but between then and now the back of his throat is red, and has a few little tiny white spots. Yes, his tonsils are swollen. He's back to the doctor tomorrow, but are these the notorious celiac disease mouth sores? And is my understanding correct --- the sores...
  7. ryebaby0
    Lisa: I normally am over on the "children with celiac disease" forum, but I try to lurk here and there since I usually learn something that is good for my son's life. I know how discouraging being sick can be and didn't want you to feel all alone after posting. I think everyone has days where they just can't stand it anymore and need to vent. Good for...
  8. ryebaby0
    You won't feel like this forever, but there's just too much information to process at first, and you spend a lot of time worrying that you're contributing to the problem not the healing! The advice here is excellent. I would only add that you can keep it simple at first -- plain fruit, plain meat, plain veggies are all effortlessly gluten-free. If you are...
  9. ryebaby0
    For a man who is so "famous" , he is awfully accessible. He was speaking at the hospital my son had just left, and met after the seminar to talk to Patrick's doctors about his case. I think he has made it his business to meet every peds GI doctor he can. (I had emailed Dr. Fasano directly early in Patrick's rather complicated and mysterious case) He seemed...
  10. ryebaby0
    Remember, plain old food is okay -- you can still have strawberries, bananas, etc. plain chicken, etc. Be open to experimenting first to find what kinds of gluten-free foods you like (we are living on Ms. Roben's pizza crust), so you might choose to buy a few things, try them, and not buy too much in bulk. I went to a gluten-free cooking class and the instructor...
  11. ryebaby0
    Sorry, I also wanted to tell you that you should ALWAYS have your doctor give/send you a hard copy of test results! ALWAYS! Keep them in a notebook, and if you have to be The Difficult Mother, this is the time to do it! (Sometimes it works best to ask the nurses, "could I just have a copy of that for myself?")
  12. ryebaby0
    I think I can help a little here -- the ANA-RP test is sometimes done for juvenile rheumatoid arthritis, and the anti-mitochondrial AMA is often done to differentiate between types of IBS (Crohn's or irritable bowel). It looks like your doctor was trying to get a wide net cast from the one blood draw (good for him/her). Certainly her IgG and IgA values are...
  13. ryebaby0
    We're also in PA -- where are your peds GIs working out of? The HLA tests are usually sent to Philly and will take until the next "cycle" of testing (they do them in batches so it could be a while). If her HLAs are _both_ negative (DQ2 and DQ8) she can't have celiac; it's much more likely that her biopsy just didn't catch a lot of damage. I would resist having...
  14. ryebaby0
    Early on, when everything was so overwhelming, when I baked on cookie sheets I just used parchment paper and so when I was done, I could throw the paper away.
  15. ryebaby0
    Most all of them have 'artifical flavors" so I don't know the source of the flavoring. I was always told artificial meant you need to check...
  16. ryebaby0
    I thought I read here that JustBorn jelly beans are gluten-free, but I can't find that information now. Can anyone verify that they are, indeed, gluten-free? Thanks
  17. ryebaby0
    My son was diagnosed with celiac disease in December /03, but has some other, serious, medical complications. I need to know where I can find out which inert ingredients are gluten-free: you know, hydroxypropyl methycellulose and croscamellose sodium, etc.... Many thanks!
  18. ryebaby0
    It's hard to not worry about contamination. I put his most-commonly used foods into plastic bins so I just didn't need to worry anymore! I would let her eat absolutely anything she'll like at this point, and then gradually move to what will become your normal meals. It just takes so long to re-adjust, so be patient with yourself. We've been at this only since...
  19. ryebaby0
    I think the recovery period varies from child to child. Our peds GI said it would be 2 weeks before we noticed a difference; friends with celiac disease said it would be more like 5. One can of Pediasure is not very much, but some kids just don't like the way it tastes. I would try for 2 or 3. (My son, at his worst, was completely dependent on elemental formula...
  20. ryebaby0
    My son loves the Kinnikinick donuts! Microwave them and then he says "get away from my donuts" to his brothers... Bread is hard. I would start with more successful transition foods: rice pasta, for instance, tastes just like the "real" thing. (We don't say that here, food is "mainstream" or "gluten-free") There are gluten-free chicken nuggets sold at Wegman...
  21. ryebaby0
    I don't know exactly what your situation is, but our peds and peds GI both advised against using any medication in children with diarrhea. If the problem is some sort of IBS, non-diarrheal meds can actually make it much worse (or at least that's my non-medical understanding of it). Acidophilus can help, but it takes a couple weeks to see any difference if...
  22. ryebaby0
    After 2 years, you don't need to settle for an appointment in 2 months. Keep calling and bugging your pediatrician, or get a nutritionist to advocate for you. We've spent the past 5 weeks in the hospital with our son, who was also down to skin and bones. He tested positive for celiac (serum tests and biopsy both) but there are OTHER things that can be the...
  23. ryebaby0
    I ordered the SCD book this morning. I'm a little leery of stuff my doctor pooh-poohs but it makes sense and I thought I'd read more about it. Now a friend with celiac children is saying "get him off the supplement" because it's giving him 27g of protein a day (not all at once--it's 9g a serving) and protein is too hard to digest. His docs want to up his...
  24. ryebaby0
    Well, at least I feel well-informed! Yes, that's me at the other forum, too -- I guess I wanted to cast a wide net. We tried the banana muffins, and he did like them, but what isn't included in that post of mine is later that night he threw up. Buckets. I thought it was the honey, but maybe not. Sooo, that would leave eggs. I'll have to check the food diary...
  25. ryebaby0
    Thanks. The gluten-free cereal and muffins are both made in gluten-free factories -- we are really cautious right now,but I'm always afraid he's still sick because I gave him something "wrong". He won't eat avocado or coconut, but I get the picture of nutrient dense. I'll admit that the fries (which I rarely let any of my kids eat) were to combat depression...
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