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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
    Our church has a sealed rubbermaid box with "GLUTEN FREE" written on the top, along with a warning to wash your hands before/after and all that stuff. Inside the box: a cut-glass butter dish with a lid, and a piece of modeling clay to stick the cups in so they don't topple a pile of disposable communion cups a box of Cokesbury gluten-free...
  2. ryebaby0
    For restaurants, we say "he has celiac disease, which means he reacts to wheat like an allergy" and then we give them a GIG restaurant card. (But honestly, we eat out soooo infrequently this isn't a problem) Or I'll say "he can't have the bun" at McDonalds "he'll react right here in the store". That last part ALWAYS gets a waiter's attention For new...
  3. ryebaby0
    My son is nearly 15, diagnosed at 9. I am puzzled by your original statement that he "hasn't taken gluten out of his diet yet". This isn't something to negotiate. It's like wearing a seatbelt, or not playing with knives. IMHO, if he isn't going to cooperate, you've no real choice but to make your house gluten-free so he will have a "safe" zone (I have two...
  4. ryebaby0
    My oldest son (not the one with celiac) had night terrors several times a week for about 18 months when he was little (like 5-6y.o.). They are not uncommon in children, and aren' t a sign of anything in particular, usually. They almost always go away just as mysteriously as they arrive. They are more common in children who's parents had them, or were sleepwalkers...
  5. ryebaby0
    I'm just going to answer your original question : YES, after 5 months gluten free, he should be gaining weight and feeling better. Either there's still gluten in his diet, or he has some other issues, or both. If it were me, I'd go back to your peds, or even better a peds GI dept. at the closest big hospital. Not to knock all the free advice, I don't think...
  6. ryebaby0
    A lot of on-line container stores sell what is essentially a large insulated tote bag. I use it a lot because with frozen items it stays cold a long time, but is easy to carry like a purse (over your shoulder). In 90 degree heat, not much is going to stay cold forever, so you might want to rely on frozen water bottles for the cold, and pack food that is less...
  7. ryebaby0
    How old was your daughter when the tTg was run? Until children are well past 2 yrs. , the test is notoriously unreliable. Also, was she eating gluten still when it was run? It's possible to have one child with, and one without, so maybe she isn't celiac and it's something else.
  8. ryebaby0
    I think you are doing a nice job sorting through the issues. Remember that a positive biopsy is definitively "yes", but a negative biopsy is not definitively "no" so you could conceivably have a month of gluten misery and still no pathological signs of celiac disease, just clinical. Especially at such a young age (which is notorious for false negative by...
  9. ryebaby0

    ARCHIVED French Fries

    ryebaby0 replied to sammers1's topic in Gluten-Free Restaurants

    Red Robin corporate will always tell you not to eat their fries --- they aren't going to take the chance that you'll go to a franchisee and get sick, and blame it on them. We tried to eat at the Colonial Park PA (Harrisburg) Red Robin and were not only told they could not make any food and guarantee it's safety, but they asked us to leave so they could...
  10. ryebaby0
    Perfectly normal to be feeling guilty, and also like you need to be constantly vigilant. I will be honest and say I don't think I will ever get over the pain of some of the things we missed, but I try to let it go. And it's been 4 years! Your son needs vitamins, both to grow and to feel better.He needs calcium. He may need extra zinc, iron and folate...
  11. ryebaby0
    When he was hospitalized (after about 3 months of testing/illness/decline and 3 weeks of not responding to a gluten-free diet) he weighed 48 pounds, which is literally off the charts. He is now nearly 15; 125lbs. 5'9" (which are the 60th and 75th percentiles for weight/height) and apart from his particular combination of immunesystem malfunctions, perfectly...
  12. ryebaby0
    My son was hospitalized at 9 and due to the severity of his condition, was placed on an elimination diet. He ate only rice with olive oil and salt for about 3 weeks (breakfast lunch and dinner) plus 7-8 cans of an prescribed elemental formula (yes, by mouth. He HATED his ng tube) and then added another food item every 10 days. His peds GI let him make a list...
  13. ryebaby0
    FYI for those of you who travel between DC and NY, or are in the Newark, DE area for some other reason: We spent a weekend at the University of Delaware Marriott (a VERY nice hotel). As an afterthought, I emailed my customer survey in with a comment that since there is a great natural food store in town where I bought these gorgeous gluten-free foods...
  14. ryebaby0
    A new thread, for an old conversation. Let's keep this brief, when you can, so we don't grow old reading all the good input that's out there. Venting is another thread! (And who among us doesn't have venting to do!) 1. Does your child have a formal IEP, or 504 -- and BRIEFLY what accomodations have you asked for 2. If you have an informal arrangement...
  15. ryebaby0
    Yes! Yes! Every district has someone who works on 504s. Find out who yours is. Write one yourself (knowing that it will be "wrong" in many ways, but it's a place to start)and make the appointment with that person. Copy your building principal and the teacher. Again, you are working on a "I just don't know where to start, can you help me, I don't need you...
  16. ryebaby0
    "Well how can parents be anything but clueless when they are constantly ignored and put in a position of not being made aware or consulted with issues that involve their children in school? It's a no-win situation. And once again, it ignores the concept of community. A community is at its best when its members are actively involved in making it work and...
  17. ryebaby0
    My son was first dx with rheumatoid arthritis; the first symptom was a limp and leg pain. It was his rheumatologist who suggested running a celiac screen panel since his arthritis panel was "off" for a solid diagnosis. The limp, joint pain/swelling was gone within a few months of being gluten-free. Of course, it could NOT be related, too -- the pediatrician...
  18. ryebaby0

    ARCHIVED Hair Breaking?!

    ryebaby0 replied to a topic in Coping with Celiac Disease

    Have you had your thyroid checked in the past year? I don't know how old you are, but hair loss bad enough that you notice it (and dry, rough skin) can be a symptom of under-active thyroid (which is treated by taking a replacement hormone). I think every 40something woman I know is on some sort of thyroid therapy!
  19. ryebaby0
    Go! Go! Life is too short to skip parties and yes, it always takes some effort. But we decide what we want to do, and then figure out how to make it happen. A better outlook, I think, than seeing gluten everywhere. That said, I agree that at 4 y.o., you may want to take a book, hang in a corner, and make sure she doesn't forget and eat something bad...
  20. ryebaby0
    I don't know WHY cotton candy (being spun sugar, and food coloring) would have gluten in it, but as for the sno-cones, what we have done for carnivals is bring a syrup we've verified ahead of time as gluten-free (or you can make syrup from drink mix!) and then asked for a "naked" cone. Then we add our gluten-free syrup! now if they could make sno-cones...
  21. ryebaby0
    I wanted to let those of you in the Pittsburgh area know that my son will be attending a school conference held at 7 Springs Ski resort, and I was really apprehensive about feeding him there. Well, these people could not possibly be nicer. They said we could put a micro in their room if we wanted, or bring a cooler of food which they would be happy...
  22. ryebaby0
    Testing this young is extremely unreliable (and have you ever tried blood tests with a baby!? Oy....) so most reputable doctors will either 1. not do it until she's at least 2 and/or 2. advise a gluten-free trial to see how she reacts. So you may want to just start with #2 on your own!
  23. ryebaby0
    My school district has a wellness policy that requires a minimal amount of "food reward" and parties which have to include healthy snacks like veggies and fruit, so we've not had much of this to deal with. But let's be realistic. Teachers have a lot to deal with and are not always in the loop with what individual parents are going to do/bring in. There...
  24. ryebaby0
    I'm re-reading your post and I don't see your wife complaining, but anyway.. Married 24 years, one celiac son and one celiac husband, dx several years ago. I have always loved to cook, and I just kept cooking, only now it's gluten-free stuff. We are not completely gluten-free; there's packaged mainstream food and bread in "safe boxes" away from the...
  25. ryebaby0
    My 14 y.o. says some people make fun of you no matter what. Some people are mean no matter what. Everyone has something wrong somehow, it's just that some you can see. And he adds, too bad it's not okay to hit people, because some people are asking for it.... ...Whoever is working on the IEP slowly needs to be reminded every few days you are still here...
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