Christine E

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Everything posted by Christine E

  1. My son was diagnosed at age one. He had digestive problems since birth. Gas, cramping, constipation, spitting up. We went through formulas up through Neocate, reflux medicines. By one year old he was eating rice cereal and baby food pears and losing weight. He was diagnosed by positive gene test, and an endoscopy that showed slight changes in the lining. I figure he had an immature digestive system and the failure to heal or mature triggered celiac to develop. So it may be impossible for an infant to be diagnosed, but my son certainly had digestive problems his whole first year. He is now seven and healthy, though small, following his gluten free diet.
  2. My son hasn't had any problems with Pebbles cereals, but FYI the new Marshmallow Pebbles has gluten in it. Also, keep in mind the top 8 allergens do not include barley, rye, or oats. Watch for behavioral changes in your kids too. Melt downs, long tantrums, excessive whining seem to be symptoms of glutening in my child.
  3. Oh, and neither of my kids will eat peanut butter or drink shakes, smooties.
  4. My 6 year old son was diagnosed Celiac at 13 months. He is about the size of your 6 year old now, small. He also will not drink milk. I always assumed he was sensitive and knew to avoid it. He drinks OJ with Calcium added, and doesn't have a problem with cheese, pudding, ice cream or yogurt. His nutritionist suggested adding a tablespoon of olive oil to his food, which adds 100 calories, and good fats (good for brain development). Also, my 10 year old who is not gluten-free is extremely picky. He eats fewer food items than the gluten-free child, who is limited in diet! He is sensitive to textures of food, even prefering certain brands (of hot dogs, cheese sticks), and will refuse to eat if he doesn't like the smell, look, or feel of a food. People without picky children tend to think this is a parenting issue, but the child gagged when he licked pineapple! And my husband is just about as picky, so I guess I know where it comes from. Good luck
  5. I've emailed ahead of a trip to a large chain, high end hotel about gluten-free meals for my 6- year-old son, and have been informed I will be charged extra for any gluten-free products they purchase to feed my son. Has anyone else ever encountered this? I think it's crazy!
  6. Christine E

    Ever Been Charged Extra For gluten-free Hotel Food?

    This is on Grand Cayman
  7. Christine E

    Ever Been Charged Extra For gluten-free Hotel Food?

    This is for restaurant food. The chef indicated They cannot heat up or prepare outside food. If they buy bread, cake mix, cookies, they'll apparently charge for the product plus 10 percent (service charge?). If this is actually the case I will look into other options. I'm.quite disappointed since we've generally been well accommodated, even being charged kid meal prices for adult foods (fish).
  8. The pediatrician diagnosed him. He has celiac. You can ask for a genetic test if you want. My son was age one when his endoscopy showed " changes". He's now 6 and has never had a positive blood test (annual). His genetic test was positive. He was severely constipated and also was supposed to have had reflux. All resolved on gluten-free diet. I strongly encourage you to work with your ped who seems to be more up to date on celiac. Waiting 6 months could be disastrous.
  9. My son was diagnosed at age 1 and is now 6. He has never had a positive blood test. His endoscopy showed slight changes, and his genetic test was positive. With those and his gaining weight once on the gluten-free diet, he was dx with celiac. You can now get a less expensive cheek swab test to see if your son has the genetic marker. I'm not complaining about this, but I have the problem that he doesn't like "normal" tasting food since he's never had it! I made a great gluten-free lasagna and he wouldn't even try it! He has a blood test every year and is under 25percent in height and weight, but my other son is pretty average. He hates the blood test of course, so he said, " why do I have to have the test? You know I never eat gluten!"
  10. My son was diagnosed at age 1. His blood screens have always been negative. The doctor diagnosed him based on a positive genetic test and a successful gluten-free diet. He did have an endoscopy that showed slight "changes" but now at the age of almost 6 he has never tested positive on the blood screens.
  11. My son supposedly had GERD his whole first year, on meds, Neocate formula. When he started losing weight at a year, a different ped GI did the biopsy and blood work, both of which were negative. The biopsy showed slight changes, but he did test positive for the gene marker. The diet worked. He has never had a positive blood test. I would assume the gluten and dairy are being transferred through breast milk and eliminate them from your diet, maybe one at a time to see if they make a difference. My son slept in his bouncy seat for 6 months, and never slept more than 3 hours till 15 months, after he had been gluten-free for 5 weeks.
  12. My son has eaten the Honey Rice version with no problems. Wheat free does not mean gluten free, and sometimes gluten free doesn't even mean gluten free. I've noticed a few products that state they are gluten free, but when you read the ingredients, they have malt, or oats, or another gluten-containing product. Not all companies fully understand the definition of gluten. Companies do have standards for cleaning their equipment between processing, but again, human error or negligence may CC.
  13. My son had a biopsy at 13 months. It showed "changes" in the mucosa lining. The slides were read by pathologists at Children's Memorial in Chicago and University of Chicago Hospital, and the pathologists agreed there were slight changes, but not difinitive for Celiac. His blood tests were negative and have remained so. He is now 4. The GI's confirmed Celiac because he has a genetic marker, and the diet worked. It is not the official way to confirm celiac, but since the biopsy was not clearly positive, they still diagnosed Celiac. I was very fortunate that his doctors took his weight loss and inability to eat very seriously. By the way, he has never had diarhea, but has the symptom of constipation. He is healthy and adheres well to his diet. But what do you say when on his fourth birthday he wishes he could eat what everyone else does??
  14. Hi, did anyone have trouble potty training their celiac child and suspect it was due to celiac disease? Especially pooping on the potty? Is it reasonable to get a doctor letter to allow my 3 1/2 year old son to wear pull-ups to preschool due to the irregularity in bowel movements? I suspect he is often constipated and that may be the problem. He's pretty good with going pee-pee in the potty, but I wonder if number two has to do with celiac, or is it just normal potty training? Any suggestions?
  15. Do you think it's celiac related?
  16. My three year old was diagnosed at 13 months, because he had the gene and the diet worked. He had negative blood work, which has continued to be negative, and a negative biopsy. Now, he is still young to be diagnosed accurately, which is why they considered the gene presence with successful diet acceptable for diagnosis. Try the full gluten-free diet-it's worth it if your daughter feels better and is healthy!
  17. I know some moms who have used a crib "tent". It's meant to keep cats out when the child is an infant, but works to keep kids in, too. Can also try a gate across the door, (may not work if can climb that too). A sleeping bag on the floor, or special arrangement may help. Hope things are better soon!
  18. I agree with the schedule thing and letting dd know what to expect and rules ahead of time. But I also understand feeling so overwhelmed that the above seems like too much effort. Of course, if we can stick to the schedule, spend some time together, the day does go so much better! For exercise, you can also dance-my kids end up laughing hysterically when I dance with them, which is also good for them! I try to tell myself I don't want my kids remembering me as the "I need to do the laundry, dishes,etc" mom, but as a fun mom. It is hard to let the house stuff go, though. Hang in there.
  19. It looks exactly like a rash my 3-year old had, across the top of his shoulders and behind his knees. It didn't appear to itch. Thanks so much for posting the picture. I described it to his nutritionist, (at Uof Chicago Celiac Program), and she said it probably wasn't related to Celiac since it didn't itch. BUT, I've never seen a rash like it before. He also has red cheeks and chin. The pediatritian said it is Keratosis?? a type of skin?(rough). Anyway, it does take a few weeks to go away. The stuff the ped gave me for his face he wiped off b/c he said it hurt. I try to put lotion on when he's sleeping, but I don't know if that helps. From reading posts, it seems anything can be related to celiac, but it's helpful to hear other parents/kids have experienced the same thing. I'm starting to wonder if my 6-year old, who tested negative, may be less moody on a gluten-free diet!
  20. We've wanted to get the other family members tested for the genetic marker, but found it was expensive, at least at Enterolab. Is there a less expensive way to get the test done?
  21. Just checked ClanThompson site, per "momagn. " Apparently, Trix has been reformulated. The new formulation is gluten-free, but old boxes may be on shelves. Check ingredients-if wheat is listed, it's an old formulation and with gluten. Thanks for the link, momagn.
  22. Gabriella, I felt the same way as you when my son was first diagnosed. One advantage I had was that he was 13 months and didn't know what "gluten" food was. Don't worry, you'll get used to it and be able to go out to eat and travel. We go out to eat often, and always talk to the restaurant manager first. We ask for plain meat, chicken or hamburger, cooked in a clean pan, and steamed vegetables with no sauce, or fruit. The manager usually has to watch the cooks make it because they don't always understand and cook it on the grill. Most restaurants know us now. Others have gluten free menus. We have travelled, not internationally, but I know lots of people have. You will get to the point where you go up and down the isles and see all the things your daughter can eat. There are a lot of "regular" foods, it just takes a while to figure it all out and feel comfortable with. You are not alone-I felt the same way. It feels very overwhelming. Hang in there-she'll heal and be healthy and happy in no time!
  23. Blood tests and endoscopys are commonly negative for children under three. My son was negative for both at 13 months, but had a positive gene and the diet worked. The doctor will rely more on the blood test after he turns three. If the diet helps, keep it up.