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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
    (answering for my gluten-free son, who's already asleep..) 1. favorite desserts: (anything that isn't sticky, or messy)round shortbread, anything with m&ms, ice cream 2. least favorite: bar cookies, oreos (before gluten-free), cheesecake 3. live with : 3 others 4. eat with: usually 2 others or 20 other 5th graders 5. prefer: fast food...
  2. ryebaby0
    I like your attitude; we usually bring in gluten-free treats without commenting about it and it is nice -- not only to feel included and accepted-- but it does reduce the amount of pity-parties his friends feel they need to have for "poor Patrick" who "can't eat anything". Wave a quinoa qrunchy or gluten-free brownie in their face and they suddenly aren't...
  3. ryebaby0
    The first time I made gluten-free Pantry's chocolate truffle brownies I almost cried, they were so darn good. You know, not tolerable, not okay -- GOOD! Bread is still tricky, but I always tell my son, we're either baking bread, or we're baking breadcrumbs (the bread that isn't so good to eat still is great for chicken!) Congrats! Joanna
  4. ryebaby0
    Thanks for all the suggestions -- he'd love ice cream, but is still off dairy, so that's not a choice! (He has even mentioned making a cake out of EnerG cinnamon crackers, which are EVERYONE's favorite food at this house. Can't keep the things on the shelf for more than two days....)Luckily we have never had a fixation with typical birthday foods -- my husband...
  5. ryebaby0
    Okay, my son's first gluten-free birthday is coming up--and I need a _really_ good cupcake or cake recipe/mix/anything! I've tried Ms. Roben's yellow cake mix and a gluten-free Pantry but both were like lead. He can't have eggs either, so that really makes this an iffy proposition. He and I already decided that if we can't produce a yummy cake, the heck with...
  6. ryebaby0
    I'm so sorry you are still on a bumpy road. My son has an egg allergy, celiac, and autoimmune enteropathy (his body thinks his gi tract is a transplant). I think I've emailed you off-list about our travails? Anyhow, you might contact the U. of Maryland's Celiac research center (find them on the net), Dr. Joseph Murray at the Mayo Clinic (although he doesn...
  7. ryebaby0
    We are attending a large (100+) Boy Scout anniversary party, and they went so far as to ask for anyone with food allergies to please let them know -- turns out there are over 20 people with allergies that all fall into the "Big 8" so I am coordinating a whole "allergy free" grilling area! How cool is that!
  8. ryebaby0
    Actually, our families and friends asked for a "short list" of mainstream things my son can have so they are sure there's something for him. (A good host wants happy guests!) Our parents went so far as to order things from Miss Robens and Kinnikinick to keep on hand. For potlucks, we bought some shockingly orange platters, and I bring a gluten-free food...
  9. ryebaby0
    My son takes Caltrate 600 plus, and a Centrum Jr. tablet that he believes is the worst tasting-vitamin in the world (and this from a kid who was taking zinc -p'tooey!). If your son is only off dairy, you might have more success with a soy milk or almond milk (my son LOVES Almond Breeze). There's also a lot of calcium in broccoli, I believe. Not all calcium...
  10. ryebaby0
    Good morning! The red rash with the use of lotions certainly sounds like dermatitis hepa-- hepa-- hepaform? It's a form of celiac; we don't deal with that here but if the lotion is not gluten-free (and it probably isn't) that would be consistent with celiac. There are lots of celiacs with a DH form. Good luck at the doctors! You sound like you are on the...
  11. ryebaby0
    Your post gave me chills. Here I go again --- my son was originally dx with jra, and rheumy said that she has patients with celiac and jra and it's certainly linked, but sometimes it turns out that the "jra" is actually untreated celiac disease that has progressed to the point that joints are inflamed. This is especially common in children. My boy's hands...
  12. ryebaby0
    We had a picc line too when he first got home. In my head I knew it was a good thing, but I felt so much better when it was pulled! Protein typically takes quite a while to rebound from profound malabsorption, and potassium levels are often (from what I read) impacted by medications. We had started ng feeds around the clock but are now down to 250-500cc...
  13. ryebaby0
    I'm with Richard -- definitely loss of spontana..spontanaei....spontananeity....grrr... I have to plan everything now, and long road trips are a challenge. On the bright side, we've found who our truest friends are. My son's friends got on the web, bought a bunch of stuff from Ms. Roben's and stocked their cupboards with it. Isn't that cool?
  14. ryebaby0
    What meds are your daughter on, and how old is she? Has her liver function been checked, and has she had a biopsy (endoscopy or colonoscopy?). At this point you need to be at a major medical center -- are you? Not to be so nosy, but we landed on this board because my son, though dx celiac/jra continued to fail despite being gluten-free and ended up on ng...
  15. ryebaby0
    celiac3270: My son (who is 10) just saw his GI yesterday and we asked the very same question. He was DX the same time as you, but has additional immune-system problems. Anyhow, his doc still wants him off dairy (we were soooo bummed). It isn't just an issue of healing; premature exposure to dairy can -- sometimes -- set off an actual allergy to milk (casein...
  16. ryebaby0
    My son (age 10) was dx 7 months ago and reliably gluten-free (he was in the hospital on tube feeds!) 6 months ago. His orginial number for tTg was 157; in about 7 weeks it was down to 130 and a few weeks ago he re-tested at 35. I think your doctor is just plain wrong about how fast it should happen, but maybe you should post and see if anyone spots anything...
  17. ryebaby0
    No, I'm not sure it isn't a bug -- he's on immunosuppressants, so that's always a possibility (he picks up stuff that other people might carry, but be asymptomatic). But he doesn't have a temp, or any other symptoms, and he hasn't been in school for days. Yeesh. Today is better though-- he kept everything in, so that's good. "Everything" was water, and late...
  18. ryebaby0
    My son started throwing up/dh yesterday afternoon, he was dx 12/03 and we've never had a gluten accident so I'm assuming that's what this is -- he didn't ingest anything non-gluten-free yesterday, and everything was food he had had before, but I don't know what else it could be. (He doesn't seem sick - no temp, etc.) Can you develop a sensitivity to "maybe...
  19. ryebaby0
    I just wondered what your experiences with GIs regarding "refractory sprue" are. We had a consult with an experienced celiac GI and I was surprised that the (apparent) current thinking/research is that there really is no such thing as "refractory sprue" -- if you don't respond to a strict gluten-free diet clincally and/or pathologically, then by definition...
  20. ryebaby0
    Of COURSE there are people in Lafayette with celiac disease -- good heavens, I live in a dinky city in PA and every other day somebody tells me about their neighbor, their teacher!! We're everywhere!! It's as common as diabetes! Your son will be fine. You are doing a great job, but it doesn't happen overnight. He will literally never really miss the...
  21. ryebaby0
    I have eaten B&M Baked Beans my entire life, like a good Yankee girl, but we can't find out if they are gluten-free or not! These are the ones that come in the brown glass jars, sold mainly on the east coast. You can find them in cans further into New England. (My son is gluten-free, so my reaction to them doesn't tell us anything) Anyhow, if I can...
  22. ryebaby0
    How old is your daughter? (I'm thinking she's not gaining much if she's 5 or 6, but maybe you have a little one here...) Think in terms of percentage. I agree with you, she ought to be gaining more weight than that. Our son kept _losing_ weight once gluten-free and he turned out to have quite a few other things going wrong with him. Waiting for him to gain...
  23. ryebaby0
    We are new to this issue as well, but you sound like you are doing all the sensible things. We set up a meeting with the kitchen staff and also provided a photo of our son taped to the Rubbermaid container with his food/dishes in the kitchen. My husband will be there (this is Scout camp) and will have extras in the car, but the kitchen staff was really receptive...
  24. ryebaby0
    Banana Boat brands are all gluten-free (they make a handy little keychain sunblock stick) and the only other thing I know is that Avon sunblocks/screens are NOT gluten-free . Hope that helps.... Joanna
  25. ryebaby0
    That would be WellshireKids -- ours come in a plastic ziploc-top "bag" so maybe you are looking for the wrong kind of package? My son thinks they are too spicy, but otherwise they are wonderful Joanna
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