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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
    gluten-free bread is generally icky...so we stopped thinking bread = lunch. My son' s typical lunch "entrees": (his middle school allows him into the kitchen to heat things in the microwave himself; in elementary school they did it for him when he went through the line) cubed cheese, crackers quesadillas (cheese, or cheese/oregano/sauce or ham/cheddar...
  2. ryebaby0
    When my son has friends over, or we have a party, ALL the food is gluten-free. But we don't tell anyone (there's no announcement -- "This food is all gluten free") and early on a friend was eating a brownie, and when my son went to get one of the plate he jumped off the couch and yells "Don't eat that! It's got wheat!"....he had assumed it was not gluten...
  3. ryebaby0
    [ He has always cooked with me as my junior chef. HE HAS ALWAYS WANTED TO BE A CHEF COOKING FOR HUNDREDS EVERY DAY. Now he would also include those who really need alternative food options. With people in this world like you Rachael, this world of Celiac is a easier place to live. THANKS!!!
  4. ryebaby0
    Your son's school should be alerted to this asap : his teacher, then the counselor and then the principal. He should not be allowed to be bullied. My son is just one of many children with dietary restrictions at his school; see if your son's teacher would let the two of you (it will be intimidating alone) do a short presentation about celiac. Emphasize the...
  5. ryebaby0
    FYI ~ my son went to scout camp 3 times after dx, and my other son works at a church-affiliated summer camp. Both were perfectly willing to accomodate his needs. Scout camp: 1. gave us dedicated space in the walk-in to keep his food 2. posted his picture on the fridge, so the staff knew he was allowed to help himself and 3. happily accepted our donation...
  6. ryebaby0
  7. ryebaby0
    (Did you post on another thread, in another forum? Because I could swear I just read about someone with refr.sprue overseas.....but just in case it isn't you.....here I go!) Let's assume you do, in fact, have these children gluten-free. If that's the case, obviously something else is seriously wrong, and changing their shampoo won't help and only endangers...
  8. ryebaby0
    Have you tried contacting Johns Hopkins pediatric GI department here in the states? They've done groundbreaking work with celiac/refractory sprue/ autoimmune enteropathy. You can actually email them to see if they would be interested in your children's case
  9. ryebaby0
    Prevention publishers (Rodale, the organics/health/fitness company) has just published a book called The Gluten Solution that offers going gluten free as a "diet" that will "cure" your joint pain, bloating, fatigue, etc.... I was so shocked that a reputable company would join in on this "trend". Certainly some people are gluten-sensitive. The book does...
  10. ryebaby0
    Hang in there! It will get easier. My son was so sick he ended up in the hospital for 7 weeks -- but now is a very healthy, very normal size 14 yr. old. Something like the 50th for height and 75th for weight, after literally being off the growth charts. He grew about 6.5 inches in the 18 months after dx. He took iron and zinc supplements for about 6 months...
  11. ryebaby0
    Modified food starch in the US is, by definition, made only with corn starch, and is gluten free. Anything with wheat starch as a base would say so. (Any food product, that is, pharmaceuticals are not included in labelling laws)
  12. ryebaby0
    As I said, great emotion.... Mc Donald's has changed to a cooking oil with no wheat protein (and the original oil tested negative for gluten anyway) and the fries are cooked in dedicated fryers. (yes, I know, you need to check your restaurant) Websites tend to be much less up-to-date than is generally assumed. Also, if you are overseas or in Canada the...
  13. ryebaby0
    Oh bummer!! But hang in there --- my son's school has responded really well (he's in a middle school of about 700 students) and the other day when he went to get fries, the cafeteria aide goes "Wait! Let's double check the label, these are new". And when they buy bagged chips, they always set aside a few for the kids with allergies, so those don't get sold...
  14. ryebaby0
    Our experience at McDonald's has always been good, but your mileage may vary..... My son and husband eat: blizzards (just the M&M ones, obviously the oreos are out!) fries hash browns plain sausage patties burgers without the buns yogurt parfaits (take off the packet of granola) I think the milkshakes are gluten-free, but we...
  15. ryebaby0
    I think there is nothing as annoying as a newly-diagnosed person who feels they "know" what other people have. When we were dx, all I did was email all our family in a blanket email, explaining the heredity factor and suggesting that if they were getting other bloodwork done, adding tTgs in would be wise. I don't know who followed that, and who didn't,...
  16. ryebaby0
    I think her doctor would be thrilled to find out about this! It's great news! There's no reason not to say "Hey, guess what happened?! After I was dx with celiac, we all went gluten free and it has made such a big change...etc..." Doctors get a bad rap for being ego-centric, but if he's going to care for her, he should know. If she's not due for a checkup...
  17. ryebaby0
    We have always washed dishes in the dishwasher together, with no ill effects. We do thoroughly rinse any particularly gluten-y dishes, though. Also, we don't use the same sponge/dishtowel/sink full of water when washing up dishes by hand.
  18. ryebaby0
    My son is also horrendously allergic to dust mites, and I have to tell you that the mattress cover didn't make a big difference, but a pillow cover did! And rather than banish every loveable stuffed animal, we gave them a home in a rubbermaid box in the closet, so they could be a little less "present" in the room. And no carpet! Ugh, the dirt in those......
  19. ryebaby0
    I am no expert, but the classic height/weight rule (which is very general) for women is 100 lbs for 5 ft. , and 5lbs per inch past that. So, for example, I am 5'5" so a good starting point for me is about 125 (100 + 5x5) . Medically, losing more than 10% of your ideal weight for some unexplained reason is alarming. So no, I wouldn't worry yet. The elimination...
  20. ryebaby0
    Don't give up! There's some source of gluten in her diet (and your doctor is a neenerhead for not suggesting that, and being more supportive). Shampoo, lotion, tums, cereal, flour in the air, prescription meds, Play-Doh, ...there's lots of things it could be. Don't be discouraged we've all been here! Be gluten detectives and get determined to hunt it down...
  21. ryebaby0
    Tacrolimus, or FK506 (its trial code) are both names for the drug that is branded as ProGraf, i.e. what my son has been taking. Most AE patients, and many transplant patients, are on ProGraf. It is a med discovered/produced in Japan and is VERY expensive (but in insurance formularies) . My son was (briefly--about a week) on TPN until they put him on ProGraf...
  22. ryebaby0
    Boston Children's (I just read your signature and info today) has done a lot of pioneering work with immunesuppresion and GI issues, so you are in a good place to find people who are current. (GI docs, I swear, all eat lunch together whether they are Peds or Adult) You really don't want to take prednisone except in dire cases; it's soooo hard on you in so...
  23. ryebaby0
    My son is 14, and has had 4 'scopes in the years he has been gluten-free, all of them (obviously) involving a general anesthesia. He had no ill effects at all, and I would not (if I were you) worry "extra" about that part. I would ask to see the ingredient list of anything they want to give him prior to or during the procedure. (If you ask if it's gluten...
  24. ryebaby0
    My son was dx celiac and did not respond completely to a gluten-free diet, ended up in the hospital, was then also dx with something called Autoimmune Enteropathy. (If you google it, it will only scare you!) which is very rare in adolescents but less so (but still rare) in adults. He is treated with an immunosuppressant called ProGraf, under the strict supervision...
  25. ryebaby0
    I just wanted to second Momma Goose's post --- bloodtest diagnosis of celiac is very difficult under the age of two. So much so that it is unlikely that you will want to put yourself and her through the "stick" in order to get a suspect result (she could "test" negative and then what?) The most straightforward approach is to remove gluten from her diet...
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