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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
    Sending him to the basement in high school borders on abuse! Holy cow! Talk to the food service people first (so you can document they are impossible) then work your way up. It's inexcusable! Most school districts are legally required to feed everyone -- ours has been just great. As far as friends' houses; my son's closest friends have a stash of gluten...
  2. ryebaby0
    Since celiac3270's "firmly gluten-free" thread is getting longgggggg I wanted to bump it to a new page and give everyone a chance to leave our favorite celiac a good thought for a better diagnosis and "going forwad" days after the 'scope coming up. (I knew he would not presume to do this himself Knowledge is power, let's hope you get some on the 13th......
  3. ryebaby0
    Try Gluten-free Casein-free and no eggs, either! Luckily we found a few things DS really likes -- allerenergy (or however you spell it) bars and quinoa qrunchies, and he's always liked fruit so that's easy too (but not enough calories!) His GI still doesn't want him with any dairy and it seems like that would really open up the world to us! Ohwell..... ...
  4. ryebaby0
    Things that could make you extra tired (like life doesn't do that, anyway!) A b12 deficiency, anemia, or an underactive thyroid! Are you taking a multi? Keep in mind that if you are celiac, you aren't absorbing a lot of what you are eating..... Hang in there....
  5. ryebaby0
    What tests are they going to do to "make him lose weight"? I've never heard of such a thing! What hospital are you with -- who put in the G-tube? I've heard of several children who had ng tubes (down the nose&throat) for elemental feedings, but G-tubes are much more serious things. You need to ask your doctors why they put in a G-tube, how long they want...
  6. ryebaby0
    My husbands' ttg came back at 21, which his doctor terms "mildly positive" but my son's peds GI says "well, positive is positive". I didn't think you could be "mildly celiac", can you? I was negative, my older son is negative, and the youngest's ttg was (wait for it!) 157!! DH will be repeating the entire celiac panel.... joanna
  7. ryebaby0
    New products tend to get here slowly; I was in the grocery store and saw the "new" Snapple-A-Day bottles.210 calories, loads of vitamins, DAIRY FREE....brought a package home and crossed my fingers. (My son hates pediasure, ensure, boost, etc....) When I called this morning I carefully started in with the "we have a child who can't have gluten, I need to...
  8. ryebaby0
    I'm with Karen; a doctor who wants more than a quick dx and dietary change knows what they are doing. Celiacs so often have profound nutrition issues when newly diagnosed, and they can be so easy to fix. My son took iron, zinc and folate for months, and it really helps him heal and feel better. And refractory sprue, Karen? We saw a well-known GI at Johns...
  9. ryebaby0
    Thanks for the input. He has been on an extremely strict elimination diet and I'm confident it isn't the soy milk (Silk) but it did occur to me that maybe he's developed a nut allergy. I made the brownies myself from the gluten-free pantry mix, with his gluten-free dishes/implements. He had been RAST tested previously but i know some doctors/people don't...
  10. ryebaby0
    It happened again -- my 10 yr. old celiac ate something, and 10 minutes later, threw up. Has felt just fine ever since. He's also allergic to eggs and I wonder if he's developed some food allergy we don't know about. The food he ate right beforehand was a gluten-free brownie with pecans -- had one last night with no reaction. Anyhow -- when you get...
  11. ryebaby0
    Hang in there, everyone. My son has been gluten-free for almost 10 months and still occasionally has a bad day. (He had some Rice Dream Vanilla swirl....hmmmmm) We try really hard not to measure the time gone by -- it only emphasizes the feeling of not getting anywhere. We had "good days" "bad days" and then my oldest invented the term "going forward days...
  12. ryebaby0
    I bought some 8oz tropicana "Healthy Kids" oj today, and when I called to check on it the very nice man told me the "secret" to identifying gluten-free tropicana products. I know many of you might know this already, but it was news to me so I thought I'd share. Tropicana products that list "natural flavors" as an ingredient are not gluten-free, and if "natural...
  13. ryebaby0
    Awwwwww..... that isn't fair! The book by Elaine Gottschall is called Breaking the Vicious Cycle. It's about the specific carb diet, which makes a typical celiac diet look like a walk in the park. However, some people find it to be a life-changing/saving experience if nothing else is working. There's a website and a bunch of people on the yahoo celiac message...
  14. ryebaby0
    Keeping in mind that we're a multiple allergy household (so like Tiffany, we cook a LOT of stuff ourselves) and that I have two children who are trying to gain weight Breakfast: Bacon, sweet potato english muffin (1/3 sliced horizontally), cinnamon toast, Hain's frozen waffles or homemade pancakes (freeze them between waxed paper and nuke), lots of fruit...
  15. ryebaby0
    There was a post in mid-July from a family with a little girl who was terribly ill with celiac disease and not getting much better, and having other dx of allergies, etc. Did I miss a post (searching hasn't found a new one, but I'm an idiot searching)? Are you out there, and how is it going? Joanna
  16. ryebaby0
    I was just wondering what gluten-free food y'all would classify as "indispensible" -- and whether it is a snack, staple, recipe, mix, or ready-made item. We were talking about this around the table and my son says glutano digestive biscuits with chocolate icing but I say EnerG sweet potato english muffins because we use them for everything under the sun...
  17. ryebaby0
    My son and I drink Silk or (if we are travelling, because it is shelf-stable) Pacific ultra Soy. He likes the plain best, and the comments on the carton crack him up. My husband, however, likes 8th Continent soymilk better, says it doesn't have a funny aftertaste I often keep some shelf-stable rice milk (Pacific) for cooking because it adds less flavor...
  18. ryebaby0
    IMHO, 5 is too young to be running a microwave--too much of a scalding hazard. Why wouldn't you expect the school to continue to heat up her food? My 5th grader drops off his food at the cafeteria, they refrigerate it until his lunch period, and then heat it and plate it for him. Haven't had a problem yet -- but the kitchen is accustomed to warding against...
  19. ryebaby0
    Sorrry! We are going to make a big brownie and frost it -- my son lit up like a Christmas tree when I read him your suggestion. (He has always loved brownies. Don't know why I didn't think of it!) Now we are taste-testing brownies to decide which one (oooh, the pain and suffering we go through -- hee hee!)
  20. ryebaby0
    This month's Prevention magazine has a small sidebar piece about celiac disease, although it does make it sound more like an allergy than an autoimmune problem. On the plus side, it emphasizes that it is much more common than previously thought, and diagnosable through blood tests. I always feel like the more people see it, the more often we can eat out or...
  21. ryebaby0
    My son's ped ordered the celiac screens (on advice from his rheumy, but the ped had the celiac dx on the short list already) of a tTg, IgG and IgA. Two of the three were sky-high. It was confirmed by a endoscopy and later by a second endo/colonoscopy (long story).
  22. ryebaby0
    You already aren't getting anywhere with your ped! Call the university -- you need a peds GI!! You aren't overreacting, she isn't just petite, she is ringing your "mommy radar" button and lucky her, you can hear it! Good job! Don't give up now, you are on the right track. Doctors work for YOU, so get what you want out of the visit. You don't need to feel...
  23. ryebaby0
    Sounds like you got a dx really quickly! That's great! It will take several weeks to start to see some real change, and probably closer to a year internally to heal completely -- but of course, everyone is different. My son gained a lot of weight at first, and then it slowed back down. Try to think of the weight gain as a percentage of her total weight and...
  24. ryebaby0
    My 10 yr. old went thru this; his ANA was positive and despite having very badly inflamed hands/feet/ankles his SED rate was only about 25. His rheumy was actually the one who first thought of a wheat allergy or celiac dx. instead of poly JRA. A positive ANA is not necessarily definitive, and most RA patients have to rule out lots of other things (including...
  25. ryebaby0
    I had a picky (picky doesn't do it justice, does it!) eater too, and I know you are tired of advice that you have tried and failed with--- hang in there. I have cried many many tears at the kitchen sink. Do you have a play therapist she could visit? I think sometimes the transition to gluten-free so often is precipatated by a crisis that children start to...
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