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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
    The reason you have to have gluten-free shampoo, etc. with little ones is the chance that they will put their hands, etc. in their mouth -- and ingest any gluten. Trace amounts are enough to cause problems! If he is not completely healed, he's likely to be lactose intolerant, but that will not necessarily be permanent. The villi in his small intestine destroyed...
  2. ryebaby0
    Well, you certainly have a full plate to cope with! You are going to see all sorts of opinions about this, but in the end you need to decide what will work best for you. I agree that endoscopy is not as scary as it seems at first, but my son has had FOUR now and the first time I was a basket case. Blood tests can show false negatives, but that doesn't mean...
  3. ryebaby0
    My son was dx at 10, with many symptoms but had been very short his entire life. Prior to dx his "best" percentile was 10, with no other symptoms and of course we had no idea of the time bomb ticking away inside him. After a long hospital stay, recovery at home, and all that, he has grown about 7 inches in the past 2 years, and is now above the 50th...
  4. ryebaby0
    I'm so glad you gave us an update One thing my son really liked while in the hospital was a video one of his friends made -- it's really just a "day in the life" kinda thing, they carried a camcorder around everywhere they went, and it's only about 15 minutes long, but it was a nice change from the relentless get-well wishes (sometimes that's just a lot...
  5. ryebaby0
    Only you guys will appreciate this: Last week, I chaperoned a trip from my son's high school to NYC. While the kids were otherwise occupied, a group of us took a taxi to a restaurant recommended by another friend -- some Italian place. I'm getting out of the cab, turned around to face the rest of the group, and over their heads read the sign about two...
  6. ryebaby0
    Good heavens, what is that doctor thinking? All sorts of deficiencies are bound to turn up in children who've been untreated celiacs. My son was deficient in zinc and iron, and borderline in just about everything else. He took a zinc supplement and it cleared up in about 4 months. Endoscopy seems very scary, but it really isn't as awful as you imagine...
  7. ryebaby0
    We use milled flaxseed/water in items that the leavening isn't an issue, or add a little bit of gelatin too; I use soft tofu for others recipes. Let me add my name to the avoiding Egg Replacer (which does give a nice lift to baked goods). I think it makes some baked goods, esp. cookies, pretty brittle and I try to avoid high-sodium items. It's really just...
  8. ryebaby0
    Our son does this, but we bought the camp a microwave because I didn't like the looks of theirs! We live close enough that I drove food in every 48 hours or so, and they put it in the walk in freezer. I second the protein bars! Every celiac needs a backup failsafe calorie source! Ask if your son can keep a stash in his luggage, preferably in a locked...
  9. ryebaby0
    I am so sorry for your pain, and her's. We will keep you in our prayers. She has two things going for her: she's in a place where she is safe, and people will take care of her AND she has a fantastic mom who is on her side. Eating disorders and depression are so serious, and so long-term, but even the longest journey has to start somewhere, and sometime...
  10. ryebaby0
    My son was dx with celiac at about age 10. He is now 12.5; when a gluten-free diet did not produce normal GI habits and he continued to decline, his doctors started looking for more answers and subsequently dx him with autoimmune enteropathy as well. AE, as I understand it, is his immune system mistaking his small intestine for a transplant and trying to...
  11. ryebaby0
    If your daughter is anorexic, she is going to need more than just a social worker, she will likely need inpatient care to recover from an illness that is beyond her control at this stage. I would not care about school at this point, she is in real danger (altho I realize you need to be concerned about the logistics of school in session and a 3hr drive) ...
  12. ryebaby0
    When we were working for weight gain, we added Ensure to his milk (alone, it upset his stomach), had lots of bacon, and granola bars (gluten-free and homemade, of course) and Klondike bars. I also have a low glycemic index book with a recipe for these brown rice-syrup/pb/dried fruit and optional nuts thingies -- we call them Those Gooey Things. Taste a lot...
  13. ryebaby0
    After our son was dx, my husband's doctor told him his blood test was "negative" but when we asked to have a copy of it, my DH discovered that "negative" was actually borderline positive and the doctor knew little about celiac (the doc recommended a LOWER gi biopsy.....). He went gluten-free and has never felt better after a long and relatively happy life...
  14. ryebaby0
    Just a couple thoughts -- being short isn't a birth defect, after all and he will be as tall as he is wired to be, but having said that I understand your worries. My son was also very short for his age, but now is about the 30th percentile height, 50th for weight. After having been literally off the chart, that's stupendous! My only suggestion is to have...
  15. ryebaby0
    I'm assuming your peds GI isn't practicing alone -- I'd call the office and ask them for another doctor there to give you an opinion, or call your pediatrician. But it seems to me that yes-- being glutenated could cause that much weight loss if she has D. Try rice, bananas, chicken, applesauce, and chocolate Ensure until she is gaining again, and lock up...
  16. ryebaby0
    My nearly 13 year old has been gluten/egg free for 2.5 years now. He drops his lunch box off at the cafeteria (he's in a middle school of about 700 students) and anything that needs to be reheated we put a little red sticker on (like ayard sale dot, I buy the sheets of 200) because once an aide heated up a peanut-butter sandwich! Otherwise it goes in the...
  17. ryebaby0
    Anemia can be caused by so many things, and doesn't always resolve quickly. Is she on an iron-only supplement, or a multi? Have her zinc levels been checked? And as long as the trend is downward, she may just need more time to come out negative, depending on how sick she was. I agree, though, sustained positive tests in the face of a diet you think is gluten...
  18. ryebaby0
    How wonderful to have the test go well! I agree with nini; no responsible doctor would require a gluten challenge for the purposes of re-testing (or anything else I can think of). It's barbaric and antiquated. If she has a positive response to the diet, that is plenty of "evidence" in a clinical sense. You are in charge here, not the doctor. Having said that...
  19. ryebaby0
    My husband feels bad when I don't eat gluten-y things, but as the years go by I just am less and less interested. He and my son do have one or two things we just don't eat in front of them --- donuts, and french bread --- but that's our choice, not theirs. We run a largely gluten-free house because I'm too lazy to run a complicated kitchen! Our idea of splurging...
  20. ryebaby0
    Another thing you might want to consider is a pretty tin to pack her portion of things in -- that way she can keep them safe from contamination and have a reminder of how incredibly nice you are joanna
  21. ryebaby0
    Hmm.... My son has been gluten-free 2.5 years, my husband 1.5. I can make a mean homemade pizza, host gluten-free dinner parties, and have travelling to potlucks down to a science. (You need a corning heat-keeping casserole, and a covered veggie tray -- that's where we put all my guys' "buffet" selections, so they can pick and choose, too). We don't eat...
  22. ryebaby0
    I think we've all been here -- it will get better, honest. He's grieving, you're going to be grieving too -- but it will be OKAY! In the meantime, our advice from our own journey 1. Have him (or you) make a list of 4 or 5 foods he loves and can't have. Make it a "spy mission" or something to hunt down replacements. IN the meantime, banish his favorites...
  23. ryebaby0
    My son had a tTg level that was so high, and he was so sick, that months after being gluten-free his test did, in fact come back positive (I think it was in the 30's when under 25 was negative). BUT at such a young age I would just tell the doctor you are happy being gluten-free, and don't see the need to re-test. You have that right, and if she's done much...
  24. ryebaby0
    Thank you so much for posting this -- my in-law's live in Exton and it would be so nice to all go out to eat again! I will have to let them know, and they will do a scouting expedition before Easter! joanna
  25. ryebaby0
    My personal soapbox issue --- when my son was 4, he was sent to specialists because of constant constipation. We had noticed he didn't "do" dairy well, and remembered as a baby switched from the breast to bottle, he cried and scrunched up a lot.... But it seemed to resolve, and on we went, with some sporadic problems. Nobody ever suggested celiac disease...
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