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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
    If only there were a way to make teens compliant If you make a bunch of punishments, she will just learn to become a really convincing liar. You want to model adherance at home, and wherever you go with her. What she does when you are not with her is truly out of your control, and you need to accept that. You can have teacher's help, and if she is...
  2. ryebaby0
    Okay, so I know all that. I get that if I go through 14 offices and 16 people and fill out 32 forms, half of which will be lost, discarded, or ignored, he can be assured that when he goes to eat, there will be something that meets the legal definition of a meal. It's not like we are new to the whole concept. Since we live in a college town, the Big U's response...
  3. ryebaby0
    Ok. I am grateful we are even at this point. I am. But I am here to whine about The College Search from a food-issue point of view, and don't anybody tell me it will all be okay and I shouldn't be whiny. Big University #1 says they feed lots of celiacs, and he'll be fine. Except there are only 6 choices of gluten-free foods. Total. For four years. When...
  4. ryebaby0
    Canker sores are often a folate deficiency. He should be taking a multivitamin. If his tTg levels are still positive, he's still getting gluten, that's pretty much it! I would limit his diet to something really pedestrian -- rice and chicken comes to mind --- and do that until the diarrhea stops. I know that seems drastic (it's what we had to do) but it is...
  5. ryebaby0
    We did this twice this summer: one wedding was tiny, with a small reception and we just brought food and ate the fruit there because the "caterer" was a bunch of aunts and they wouldn't have been able to do anything. At a wedding in our own city, my son was a date and stopped at home on the way to the reception (while his date was taking bridal party pics...
  6. ryebaby0
    Firstly --- it WILL get better. The reaction to a smudge of gluten may not change, but your ability and his to navigate a gluten free life most absolutely, definitely will. Secondly --- we've all been through detective school, trying to figure out where some gluten was picked up. I think that first 12-18 months I was the most paranoid mother on the planet...
  7. ryebaby0
    I don't think any reputable pediatrician will speak to you about her situation, since you are not the parent and HIPA laws would keep them from discussing your gdd as a patient. Not to mention it is likely to really annoy the other adults involved. I think the idea you want to convey is that it would be good to know if she is celiac, it would be useful...
  8. ryebaby0
    I would have him biopsied. Yes, it could be falsely negative but that is not the majority of experiences. If he is scoped at a reputable facility that deals with children, truly it will be harder on you than on him. (My son is 17, and was scoped 8 times between 8-15 yrs.) But you can't make medical decision for his future based on general impressions. If...
  9. ryebaby0
    As I write, my 17 y.o. son is making three scrambled eggs with 4T of butter and 2T of cream to go with his 2 cup glass of whole milk. His typical breakfast. We go through a half gallon of ice cream every three days. He eats bacon regularly. Cheese is good too. He has a basket of chocolate in his room to eat all day. We added avocados in desperation to reach...
  10. ryebaby0
    I have no qualifying statement or uplifting quote for you -- yes, yes, YES! We try to laugh about it, how all I do is cook, and all he does is dishes (that's how it works here, I get 'em dirty, he cleans up). For people who have a life that can't be about the food --- we spend what seems like ALL @#$%# day in the kitchen!! And yes, I like to cook. But really...
  11. ryebaby0
    I know I'm just repeating everyone else, but this is a hot button issue for me. The rule at our house is "Our house, our food". It's not like you are contemplating feeding your guests rocks or sticks. Everywhere your daughter (my son/husband) goes, she has to make accomodations. She has to forebear. She has to smile politely and say "no, thanks" and "it's...
  12. ryebaby0
    We had penne carbonara (pasta, sauce made of white wine, parmesean, garlic, red pepper flakes, crispy bits of BACON!), banana bread, and ice cream. Easter brunch will be cheddar frittata, ham, rosemary potatoes, and oj carrots. (My son is trying to gain some weight....)
  13. ryebaby0
    I think if you are really curious about what CHOP would say, you should go. That being said, you may have to wait months to be seen, spend a lot of time having records copied (and you should send them to CHOP yourself)etc....it's not as simple as it seems in articles They are also likely to want to know, specifically, why you want a second opinion. Are...
  14. ryebaby0
    Hmm...my celiac who is not trying to gain weight had: Breakfast: Rice chex and milk Lunch: Leftover porcupine meatballs, banana, blueberry coffeecake Dinner: cheese pizza and water I am not a celiac, but I eat a lot like one I had: Breakfast: banana and soy milk Lunch: turkey and cucumber (the two ingredients, chopped up together)...
  15. ryebaby0
    For those of us in Central PA, you might be interested in a Kickstarter project that is aiming for a mobile gluten free bakery! It seems like a nifty idea, but you can check it out for yourselves at Open Original Shared Link I have no stake in the project, nor do I know the people involved. (Which is odd -- you know how gluten-free people in small cities...
  16. ryebaby0
    (Well, that's not a very nice welcome-to-the-board..I think most people here have gone through relief/horror/denial/grief/coping/happiness cycles in their health journey. Everyone likes to be sure before they embark) My son gradually became desperately ill and diagnosed as a result -- probably had been celiac for 6-7 years. Looking back, we realize the...
  17. ryebaby0
    You've gotten more specifics than your head can probably hold, so here is my family's (2 celiacs, 2 not, a partially gluten-free house; 8 years now)advice in generalities: 1. embrace the change. 2. prepare to have grieving moments 3. allow your son to be mad, but don't pity him 4. be adventurous -- one person's "we hated this" could be your favorite...
  18. ryebaby0
    I wouldn't associate outbursts at school with much, apart from being there Seriously, if he was undiagnosed, he's behind in his "nutrient balance" and can't catch up without a supplement, for now. He's running a race he started late, so to speak. He should take a multi, and probably be prescribed enough zinc and vitamin D, too. Both of those latter supplements...
  19. ryebaby0
    My 17 y.o. had horrible migraines (aura, blind in one side of his face, 2 -3x/month) but his doctor prescribed magnesium and he has not had one since. He takes 400mg two times a day. Migraines are not uncommon in adolescents, it turns out. More than other conditions, what works for one person might not work at all for another, so keep trying stuff.
  20. ryebaby0
    If you look at your lab report (always get a copy for yourself), there should be a range listed. A biopsy can always be falsely negative (say you aren't celiac, when you are) because a biopsy is just bitsy snippets from places the GI deems likely choices. It's not like hitting a mark on the pavement, more like throwing a dart at a board. Most GIs are not...
  21. ryebaby0
    *Sigh* You are quite right. He had both,and I got my acronyms mixed. Not to mention I spelled parenteral incorrectly as well....
  22. ryebaby0
    Ask your doctor about autoimmune enteropathy. My son is celiac and has AE, which is very rare, but presented in his case as refractory sprue. (Docs at Johns Hopkins don't believe there is any such thing, btw). He was started on prednisone, TPN (total parental nutrition -- a nasogastric tube feeding) and weaned onto ProGraf, a strong immunsuppressant usually...
  23. ryebaby0
    My son was dx at 9 with JRA ---insert long story here --- it turned out to be entirely his reaction to raging undiagnosed celiac disease. Once he was gluten free and stable for about 6 months, his joint swelling, pain, etc. (he also had trouble walking, and dropped out of soccer) disappeared completely and has never returned. He is 17 now.
  24. ryebaby0
    I completely agree with the other comments. We've been married 26 yrs, husband/son celiac for 6. While I am as supportive as can be, it does sometimes hit me that we will never have the life we expected. People who say "oh, but you can bring your food, etc., " are missing the point. My DH gave me a Xmas gift last year of a 3-day trip with my Mom/niece to...
  25. ryebaby0
    If you are traveling to a PSU game, ndulge cupcake boutique in State College now has Gluten-Free Saturdays once a month, which will soon change to twice a month. Go to their website so you can order ahead (or get put on the mailing list). We had 6 of them last weekend and they were great -- chocolate and pumpkin were super; vanilla only okay (but I don't...
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