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About Pacer

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  1. Sussex County NJ is now celiac friendly! Little Anthony's Pizza in vernon NJ is now serving Still riding Pizza. We had it last night and it is great. The owner is super nice. He was driven to provide gluten-free pizza when he saw a young customer in tears b/c he couldn't have pizza. the facts: Vernon NJ -- Route 515 in A&P shopping center 973 764 9800 open daily 10 am -11 pm nearby Mountain creek water park, ski area, Hidden Valley ski area, Diablo freeride park www.littleanthonyspizza.com www.stillridingpizza.com Go there and lets support them for supporting us!!!
  2. Ivy, good luck. Everyone has their opinions on the validity of 'diagnosis'. If it were me ( a 44 year old housewife and mom), havinfg a dx'd realtive, and simply improving on a gluten-free diet would be enough for me. however, as a college student...you probably have the right to request special meal details - either a fridge in your dorm, a transfer to a kitchenette type of room, or to have the cafeteria provide you with foods you can eat. Interestingly, I just read about that exact issue in the Scott-Free newsletter. In fact, Scott Adams, who is the creator of this site, I believe he mentioned he has a child in college as well. Back to the point, if you think you may be needing those special services, you are probably gogin to need an official DX. Again, good luck. HEIDI
  3. Thanks for all the stories and input everyone. We are moving, so it will be a few weeks before I can really test my son and see how he's running. However next Sunday we are doing a local celiac awareness walk. it's in Queens, NY. I may be able to tell a little from that. I also called a couple of nutritionists today. I am truly drowning here - I need professional help, somehow. Its too hard, I am having anxiety attacks every time i put a meal down. I fele like I'm starving my kids. Nobody wants the food I'm giving them. I need someone whose job it is to know how to introduce foods to kids. one point I'd like to just vent -- I've come to the conclusion that controlling your diet, removing your favorite foods.... has got to be one of the most difficult things anyone can do. How else can you explain people like Oprah, or Rosie who have $$ millions but can't seem to control their weight. I'm just getting tired of people telling me how "easy" celiac is. if it was easy to change your whole way of eating, there would be no fat people in the world. Ugh - I will sign off - evenings are never a great time for me. I just feel so utterly overhelmed by this whole thing, I would do anything to make it go away. bad day.
  4. It is sucha kick in the head when you go through a long list of ingredients on a product, and you're almost safe...nothing obvious on there......and then you see.......malt. augh!
  5. ~Well celiac and gluten sensitivity are sometimes confused. I guess you coudl say "celiac" is the end result or manifestation of gluten sensitivity (aka intolerance), I believe the clinical def of celiac refers to villous atrophy. Most of us here on this parent's forum hope to prevent the villous atrophy from happening by catching it early. ~Gluten and wheat are different. Gluten is a protein found in wheat, but unfortunately for all of us here, gluten is also found in oats, malt, and barley, and some other grains. Glad you are having good results. Fiddle, I had just about every form of baby carrier ever invented. I had a Maya sling, a Kelty backpack, a Baby Bjorn, I even had this Canadian thing which was like a soft backpack that could be used for younger babies (the baby faces the opposite way from the parent and rides lower than a regular frame backpack). luckily...that phase is over anyway. Heidi
  6. brenda, my boys are 6 and 8 now, but YES, we had basically all the same symptoms. My older - he was the most insomniac baby I ever saw. He came roaring into the world with raging , inconsolable colic and went 2 months without a nap unless he was being physcially carried. And I dont mean being pushed in a stroller, I mean carried, ON my body, until my knees felt like they were being ground to dust. He had major BF-ing problems, FTT, and I was told to stop BF-ing him but that only made me want to succeed more so I managed to keep him Bf'd . Having recently completed an Ironman triathlon I can freely say, BF-ing that baby was tougher. Much. I did healfheartedly try an elimination diet, but at the time my DH was not yet DX'd so we didn't know from celiac. My younger son, similarly insomniac. Also needed to be on a body to rest. He had eczema at 2 months old and I tried an elimination diet for that, but being a vegetarian, and being sleep deprived, overwhelmed with a new baby + a 2 year old, I never really got rid of all the hidden dairy. And I tried eliminating everything else EXCEPT gluten. Why not gluten? Well --- it was just too unthinkable, too hard. At the time they were saying BF babies could resist celiac. I was doing enough of my part (so i thought) just by BF-ing, did I have to give up every SINGLE thing I enjoyed? Now that I think about it, if I had only given up gluten then, it's possible their entire toddlerhoods would be different. I won't go into it here and now, but motherhood has run me ragged, worked me to the bone with special needs, isolation , and illnesses and now the diet. Maybe I wouldn't be so burned out and lacking in reserves right now if we'd tried the gluten-free thing earlier. Not to dump my baggage on you. Just to answer your question #1, my kids BOTH had major sleep issues and BOTH seem to be shaping up to be celiacs. (If you ask Enterolab they'd say no further proof is necessary but I'm not totally sure..). So if you could learn from my story, perhaps a month of gluten-free could show you guys a lot. He is still exclusively BF? Wow, that is a lot on you. (I hope you get a mackin' mother's day prezzie!!) My son also had no intrest in foods til "late" - 9 months in our case. Ironically, his first food that he didn't refuse was his dad's gluten-free bread, which he loved! He used to like to pinch off pieces with his fingers. We had to call the doc and make sure it was OK for him. How long have you been wheat free? Have you been gluten-free yet? Glad you are feeling good. HTH Heidi
  7. Fiddle faddle, I got a smile out of reading how you solved your son's problem of needing to sleep on top of someone. Put 'em in with his brother! Brilliant! That's what siblings are for right? they must have been adorable together. What's your spacing? I plan on contributing to the OP, but definitely my son had to touch a person to sleep as well. I never thought of putting him in with his brother.It would have been perfect payback because his older brother had stuck to us like glue for 2 years. I'm glad everyone is sleeping now. That reminds me, Back to Brenda's kids! HEIDI
  8. We have been a gluten-free household for about a week. ~~~Flashback: my younger son (6) - obvious GI symptoms which abate with gluten-free. Older son (8), apparantly asymptomatic except very low BMI and ++ on Enterolab. End flashback.~~~ Today my 8 year old said to me: " Gluten Free sucks, but it helps me feel better. ". My first thought was, he is such a people pleaser, he is just dutifully repeating the line he's been fed. But I asked how he feels better. He told me that he can now keep up in tag, and catch people he could never catch before. huh???? I was like "really??" and he said without a doubt, he runs faster. I did not probe much further but since I have gone jogging with my son many times, I can easily quantify this over the weekend. Is that even POSSIBLE?? I have always known my son gets fatigued more easily than some, but I attributed it to body type and asthma. (of course there is the whole continuum of body type and asthma relating to celiac, too). He has not read the celiac literature so he doesn't officially know about the fatigue thing. if this is true -- if being gluten-free can help him find energy he never knew he was missing -- well, then maybe I won't complain so much about having to feed my family vile foods. I'll keep you guys posted. HEIDI
  9. Wow - that is a nice example of how gluten-free awareness has eveloved in the last few years. Let's keep it going everyone!! :-)
  10. Natalie - I hope that you are on track to making life healthy and wonderful for your sweet daughter. I cannot say I have BTDT , I am new here too and struggling. If you click on my profile and read my recent posts you will see the rantings oops I mean words of a desperate, distraught , extremely overwhelmed person. I consider myself an extremely proactive person. I would do exactly the same thing as you. Do what you have to do to get your kid feeling good, straightening out the technicalities of a diagnosis can come later. Last I checked, insurance didn't pay for $6 boxes of lame pasta anyway. It can't hurt to try the diet. I am no MD -- but all of the symptoms you describe in your daughter could easily be celiac. Of course, it could be something else. Celiac is not my son's only problem either. He has another genetic potentially life threatening chronic problem, which was flagarantly misdiagnosed for 6 years by a revered department head at Columbia U Hospital -- which just happens to be the home of Saint Peter Green, another MD who dismisses Enterolab as pseudoscience. (did you follow that? Short version: trust your instinct). Did that help at all? Just wanted you to know you're not alone. HEIDI PS. Enterolab also suggested we go casein free, (109 units) but I just.can't.do it right now. We are vegetarians - casein free is too much for us all at once.
  11. Hi - I am saving this thread. I am also a veg . Not a celiac, but just as bad, I run a veg household with a husband (dx 1999) and 2 young children who have been veg up til now. I have gone gluten-free in solidarity with my kids, and we are all struggling. I am SO distraught about the whole thing. in fact there is some hope of trying to be able to get my younger guy (6) to eat fish. It kills me, but he needs food. For someone who eats meat, celiac is really no big deal. For a vegetarian, it's a horribly cruel irony. (sorry - drama here too) So, can you take a lactaid pill and east some cheese? Even if that's a band-aid solution for a little while? The only resource that hasn't been mentioned is the vegiac.com website, but I tried signing on to post on their boards and my password never really worked. Good luck everyone -- and congrats to those of you who had your recent DX and are starting to live life finally. HEIDI
  12. Well, hmm. Another thing you could do is, try the gluten-free diet now while she is recovering. This is kind of a "live for the moment" sort of philosophy, to get her better first, then pinpoint exactly what was making her ill later. Maybe you could do a gluten challenge in the summer once she is feeling better. That might be OK timing since she won't be in school. From what I understand, official gluten sensitivity/celiac is pretty much non negotiable. No cheating. :-/ On the up side, sounds like your DD is heading for college soon -- maybe she can become a researcher and find us all a solution :-) Definitely others can analyze the test values better than I. I am still waffling back and forth on testing - hence my presence here. As far as carbs for an athlete, though....... you rang? I am an Ironman finisher and my (celiac) DH runs at least one marathon every year. Although I am not a celiac I am pretty hip to carbs, their relationship to endurance, and how to get them with or without gluten. Ask me anything here or feel free to email or backchannel. You guys are so lucky she likes meat. I am trying all sorts of things to get my kids to try new foods. Risotto for breakfast.....I am desperate to get the to eat, anything , anytime. We have about a 10% acceptance rate for around here. My guys are pretty open to tasting new stuff but they will totally spit it back out if it's substandard, which most of the gluten free starch substitutes are. We have gone through tons of different nutrition bars...I am even ordering some crab legs (OMG I find them to be utterly bizarre - like bug legs! ) in hope that we will find something my kids like. They literally LIVED on pasta, pizza, grilled cheese, and sandwiches. Hope you get some more replies -- consider this post bumped...HEIDI
  13. Hi - there are some other bars out there that are halfway decent that are gluten-free. I have not found any that taste as good as Luna or PowerBars. However, here is a partial list. of course YMMV and it goes without saying to always check labels yourSELF and not take anyone's word that a packaged product is gluten-free. LaraBars. Clif Nectar Bars. Hammer Nutrition food Bars. SoyJoy. thinkThin - haven't tried this but it comes in "brownie crunch' flavor - sounds promising. FitSmart. Organic Food Bar - I personally ate one of these - "Belgium Chocolate Chip" flavor, and I actually think a kid might like that one. it wasn't awful. You may find some hints for PowerBar replacements on the Celiac Fitness forum. HTH HEIDI
  14. Tulsa, Welcome. I am also new. I am not super eloquent about writing out feelings either but I'll try. Since she is asymptomatic (that you can tell now), why not approach it as an 'experiment". Something must be off or else you wouldn't be testing her for mono. Rather than a life sentence, why not just present it as an experiment, to see if she feels better in ways she didn't even know was possible. Give it -- 2 weeks? Then reassess? (sigh - that is what I'm doing with my 8 year old -- today was our first gluten-free day). Does she eat meat & fish? We have previously kept a vegetarian household and grains were the mainstay of our diet. When I think about regular omnivores going gluten-free, it seems pretty simple comparatively. I can't really assess those number values so I am assuming they come across as borderline? You could also offer to go gluten-free in solidarity. I am not a mom of a teen, but that might or might not mean something to her. HTH Heidi
  15. Please everyone, keep it coming! (I realize I am not the OP, but..) You have no idea how reading these repsonses can help a person stay motivated. Each time I see a person who has a similar situatino to mine, it gives me a bit more hope that we can do this. I think in general anyone who is hanging out on this pre-DX board is going to have a huge level of anxiety and uncertainty. It really helps to read the success stories, as well as the struggles. Thanks all - HEIDI