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  1. I feel a little silly posting this, because I should be old hat at the gluten-free thing by now, but I could use and will take any advice anyone can throw my way. Just over two years ago, my middle son was diagnosed with celiac at the age of 7. It was hard for him to make the transition, but he had been sick for so long and he had a good understanding of what was going on and that changing his diet would help him feel better. It also helped that he wasn't a huge carb eater before and we were able to find decent substitutes for most of the things he really enjoyed. And finally, he's my least picky and most adventurous eater, so being willing to try new things made the transition much easier than it could have been. We decided from the start to have a mixed household, based in large part on things I read about Danna Korn's experience. I also took into consideration that my son was old enough to understand that there would be things in the house he couldn't have. I approached it from a couple of ways. First, I decided that there would always be an acceptable substitute for him for anything we bought that he couldn't have. Second, I decided that anything I actually cooked would be safe for the entire family to eat. That pretty much meant that the gluten stuff in the house was limited to sandwich bread, the occasional snack or cookie, and quick fix foods like chicken nuggets and stuff for the other boys. So far this approach has worked fairly well, there have been a few bumps in the road, but he has been remarkably good natured about them when they do happen. So that brings me to today. There is a 99.9% percent certainty that my almost 5 yo (DS3) will be officially diagnosed within the next two weeks. Actually his ped. has already said yup, this child has celiac, but of course we have to wait for the official diagnosis from the GI. His appt. with the GI is next Wednesday, and if they do insist on an endo (which I'm hoping they don't) they'll do that within 5 days or so if past experience is any indicator. This child is a completely different child. Picky to the nth degree and then some. Carb addict. Only veggie he'll eat is carrots. And because of his age, I predict there is going to be very little comprehension of "I can't have that." So we've made the decision to go entirely gluten-free in the house. The oldest son and husband can get their fixes out of the house since they eat lunch out every day, I can live with gluten-free, and it will just be easier if there isn't anything tempting in the house that DS3 can't have. Obviously, I know what taking the whole house gluten-free entails on a technical level, so that isn't the problem. I think my biggest problem is going to be DS's pickiness. I can't afford subs for everything he eats now, so I am going to have to steer him away from those foods, but I want to do it as gently as possible. Another problem is going to be DS1's reluctance, he's a stubborn one who is raging with pre-teen hormones and he is going to feel slighted and resentful. And then finally, I'm worried about sending DS to kindy in July. Though the schools have been great about working with us and we have a medical plan in place for DS2 and will certainly do one for DS3, by the time DS2 was diagnosed, he could read, he had a good understanding of what he couldn't have, and we had already established good communication with his teachers (he was diagnosed in the middle of the year and I kept his teacher updated throughout the entire process, which for him, took 6 months). DS3 isn't going to have any of those advantages. I'm not going to be able to rely on him even minimally to say "No thank you, I can't have that." I'm going to have to put my entire trust in the teachers and administration in a way I haven't done before, and that makes me nervous. And to add to it all, they are both going to a new school this year, so while I'm hoping that this school will be as accommodating as the previous one was, I'm going to have to start the process from the beginning here, where at his old school the counselors, cafeteria staff, and specials teachers were all familiar with things, all I had to do was educate a new main teacher every year. I should say that DS3 might surprise me. He has a fair inclination of what DS2 can't have, but I just don't think that he's going to translate that to himself as easily. Does that make sense? So any advice on any of those issues will be much appreciated, especially from parents of younger kids who have BTDT.
  2. I remember reading somewhere (I think it was an EMT's blog) about a woman they picked up in the ambulance who KNEW she had a peanut allergy, but thought smooth peanut butter was okay. Geesh. I half jokingly told my son the other day that I was just going to start telling restaurant people that he had a bread and pasta allergy so they'll stop offering me the white bun. In the year since he was diagnosed I've heard them all: From a friend's mom: "He can have the cookies I made today, I made them with white flour" From my FIL: "Cobblestone Mill Sourdough bread is gluten free, I have problems with wheat and it doesn't bother me." From restaurant employees (twice): "So, you want the white bread bun?" From another mother: "So, he can't have any peanuts?" (at least she was trying) And then there's my MIL, who absolutely does not get CC issues and feels the need to comment on the fact that I have 2 toaster ovens every.single.time she visits.
  3. Thanks Kibbie. I've been in contact with the school for the last week and they have been great about working with me. We are putting an IHP (Individualized Health Plan) in place that will hold with any public school (including universities) within the state. It isn't as all encompassing as the 504, and they did give me the option of a 504, but the school system requires academic testing to show that the disability does not also include a learning disability. I don't agree with that, but it is their policy and I don't have any desire to put my son through that many tests to prove he isn't learning disabled, yk? The IHP is as valid as a 504 as long as he is in a public school in our state, so I'm satisfied with that. Thanks for all your help.
  4. I've read most of the ADA, and with the exception of situations that it does NOT cover, I don't recall the act mentioning ANY specific disability. A disability is defined as such: Everything I have read indicates that eating is a major life activity, and I would tend to agree, and the general consensus from what I've seen is that celiac is covered under the ADA as a result. While I agree technically their statement that I think it is misleading. Just IMO. Additionally, the USDA Food and Nutrition service website states: Again, I think that while the specific word celiac is not used on that website, this statement would certainly cover celiac, do you not agree?
  5. It's under My Controls. There you can view topics or threads you have subscribed to. HTH.
  6. I honestly have no idea, we have a traditional diagnosis, if you will, so I haven't given it thought. I would imagine that if your ped. was on board with the diagnosis, that should be enough. Though, if it has been diagnosed as an intolerance vs. celiac, that may make a difference in what you are entitled to, ie. under the ADA.
  7. Thanks Kibbie. I guess I'm just so pleased that the school and the teachers have been so accommodating so far that I don't want to put them on the defensive. Can you tell I'm just so NOT a confrontational person? LOL. I know I need to work on that. OTOH, the principal at our school is just amazing, I can't imagine that he would take offense, shrug. Some of the things that I worried about though were: -other teachers. Though DS is getting much better about recognizing what he can and can't have, I worry that a substitute or other authority figure will unknowingly gluten him. -emergency situations. This is my biggie concern. What if they end up at school past the normal end of the day (it happened a few years ago with an unexpected ice storm, several schools ended up keeping the kids at the school for the night, and several of the schools who opted to send the kids home ended up with kids on buses for 8 hours or more)? Will they be able to provide food for him? -a future teacher not taking the situation seriously. With the rise in food allergies and issues, I've also seen a trend towards some people believing that parents are overreacting, and I'm worried that one day we'll end up with a teacher that thinks she knows better than me, yk? Oh, I couldn't get your first link to open. Is the link good, or is the site just down for the moment? Thank you again Amy
  8. We go TorT as always, then check the candy against a gluten-free list when we get home. I've found that he can usually keep most of it, and what he can't keep, his older brother is usually willing to trade for, so it all works out.
  9. We do most of our grocery shopping at TJs now, and save money in the process. I find that though my selection is a bit limited there, I can certainly get a week's worth of food within my budget, and it's better quality food than when I try to do that at the regular grocery store. My favorites in the gluten-free category are polenta (we LOVE polenta lasagna, and it is a relatively quick and easy dinner) gluten-free granola pancake and waffle mix gluten-free pasta, it tastes similar to Tinkyada to us and is half the price! Banana waffles (half the price of the Lifestream ones DS likes) Pancakes taquitos Other than that, we buy a lot of the frozen seafood items, and veggies (my kids LOVE the soycoutash, and DH and I adore the fire roasted corn), fresh veggies and salad makings, cheeses, nuts, dried fruits, chips, everything we would love to get at the traditional grocer but can't always afford, LOL.
  10. I tried to search, but "504" is too short a word, LOL. I'm trying to determine what the benefit to my son would be of seeking a 504 with the school. As it stands right now, his teacher's have all been very accommodating and willing to work with us, and I'm providing all of his food. I do know that that I technically have the right to request appropriate meals for him through the school lunch program, but again, I'm not sure that there would be any benefit to this other than to raise awareness, yk? I fear that they would try to feed him salad every day or something, LOL. Anyway, I stumbled across a site this morning detailing how and what to ask for with a 504 for someone with Celiac. I guess I'm asking for opinions as to whether this is something I should do vs. something I can do. What do you think? Amy
  11. Before DS was diagnosed, he would eat a meal and 15-30 minutes later start complaining that he was hungry. Once we got the celiac diagnosis, we figured that he had been misinterpreting a gurgly upset stomach for "hungry" this whole time and sure enough, once we went gluten-free, the constant "I'm hungry" stopped. Now it has started up again. We haven't changed anything recently, so I can't imagine a regular source of gluten contamination, which was my first thought. Believe me, I've racked my brain and while there have been a few incidences (eating out, mostly) where cross contamination could have happened, there's nothing regular. It'll work like this, he'll eat a meal's worth of food and announce he's full. 20 minutes later after I've put all the food away, he come in complaining that he's hungry, SOOOO hungry. I've tried to talk to him about it and I've suggested that what he's feeling isn't likely to be hunger pains, it is more likely an unsettled stomach, but from what source? And whatever it is, more food (which is usually gluten-free crackers or a bowl of rice, his fave comfort food) does seem to settle it. Maybe indigestion? I'm close to calling the ped. and bringing him back in, but I have a feeling there are posters here who would have a better clue!
  12. Margaret, We met recently at the local Celiac meeting, nice to see you here. I have a 7 yo son too. It is really hard to feel left out, so far we've been really lucky that there has only been one birthday party where pizza was served and he had to bow out. Every other event I've managed to provide a gluten-free version of what was being served, and he's been okay with that. I keep the makings for pizza and stuff on hand all the time now after I received less than a day's notice that there would be a pizza party at the school once, LOL. We've found great recipes and mixes for breads and baked sweets too! The hardest part for us so far has been school. Often I receive limited notice of special events planned and have to scramble to get things together. This week they are having a Chick Fil A nugget party, and for whatever reason, they can't provide him with a grilled piece from there, so I'll end up getting it and taking it to the school, I do try to keep the majority of the snacks in the home gluten-free, and I avoid his old favorites that he can't have any longer altogether. That helps a lot at home. I know we're on opposite ends of the county and gas prices are kind of prohibitive right now, but if you'd like to get together with the boys sometime, I'd like that.
  13. My son is diagnosed celiac, and since we know it came from somewhere genetically, we did determine to have the entire family tested via blood test. However, our insurance sucks and we're just plain out of $ right now, so the genetic testing and anything further than that simply can't be done. Since I've lived a lifetime with mild "sensitive stomach" issues (gas, glurgly feelings, feeling overfull after reasonable meals, etc., I've never had a problem with the big "D" though), I decided I would go ahead and get the basic blood work done, and it came back negative, but they did not do the EMA or total IGA, so I'm not sure if it's worthless or not, shrug. I'm considering going totally gluten free with my son, as I've noticed that since he went gluten-free and by default the entire family's gluten consumption was significantly reduced (I also order gluten-free at restaurants with him, he feels better if he isn't singled out, he's only 7), I have less issues with gas, heartburn, and that gurgly feeling I always used to get at night. I also just feel better all around, but I don't know how much of that is psychological relief at finally having an answer for my son. So to answer your question, I'm mostly gluten free, though I will admit to having cheated a time or two, it's hard when you don't know for sure, at least for me it is. As for whether or not I think I have celiac, I honestly don't know. If you had asked me 2 months ago, I would have insisted that the celiac genes in my son must have come from my husband's side of the family, as they all have histories of GI issues, including IBS. My husband, however, says he is fine, so who knows. And now that I know that I do feel better with at least a minimum of gluten in my diet, I'm not so certain that there's not something going on.
  14. From what I have been told, there is one dietitian in this part of the state that "specializes" in celiac disease, and she works for the Ped. GI's at Duke. I don't know if she's available for private consultation though. Lizard, I'm glad you've found a good GI. I'm still debating on what to do about myself, I'm very torn right now.
  15. After having been at home with my kids for 10 years, it's time to consider a career. I thought I was set with what I wanted to do, but I'm finding myself increasingly drawn to food science even though science in general is scary to me, LOL. Anyway, I thought it would be worth asking around here. If anyone does do this as a career, I'd love to have a conversation about the educational requirements and career opportunities. TIA
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