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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
    Actually, we are about 3 hours away --- closer to 4 in the winter, or when PennDOT is busy tearing up Rt. 22! We're quite a bit east of the 'burgh j.
  2. ryebaby0
    My son has been a patient at Children's of Pgh for 3 years now, and I have nothing but wonderful things to say about everyone there (except the cafeteria people! LOL) If you have specific questions about anything, I'd be happy to answer them. My son was inpatient 7 weeks and has had 4 scopes, plus numerous other procedures there. Be really vocal about what...
  3. ryebaby0
    Congratulations on getting through a hard experience! I think your decision was a wise one, to go ahead and get the biopsy. Only the slides of the tissues will tell you much, although a good-looking view on 'scope is a good indication that nothing else is wrong. And remember, since the biopsy sites are selective, you could get a "no damage" result and still...
  4. ryebaby0
    You will have to decide what you can live with ~ but I did want to add that between the age of 9 and 13 my son has had FOUR scopes and one surgery, and all of them went perfectly fine. The anesthesia is very safe, and not the deep sedation we imagine as adults. The IV is put in after your child is asleep (they'll put them out with a mask) and taken out once...
  5. ryebaby0
    How did you decide to test? My 13 y.o. never had an egg allergy, and during his celiac crisis started reacting to eggs (projectile vomiting) of any kind or amount. The RAST test was 1 and we've avoided eggs ever since.(almost 3 years now) When I ask his peds or the peds GI about retesting, they say there's no value in the blood test (you can be "positive...
  6. ryebaby0
    There you are! My husband has added his two cents: couldn't barley malt be added as an artificial or natural flavor? And my thought on THAT was --- isn't malt always listed as it's own ingredient? And I know there's a Kraft label I read in the past month that had some blanket term followed by "(barley malt) " as if to answer the question of "well, what's...
  7. ryebaby0
    Shiny! Thanks for the citation (weirdly enough, I live in State College, PA....) So what does all that mean, exactly? If a flavorist (love that term) is blending chemical compounds, wouldn't artificials still be okay? Unless s/he's using a protein? Oy... Where's Richard? He'll know the answer to the gorram problem joanna
  8. ryebaby0
    Does anyone have a source of information about artificial flavors and how they are produced? My son was told very early on that they are a complete no-no. (But we were also told decaffinated coffee, vanilla, and several other maybe things were "definitely" no) In 2.5 years I've NEVER found an item that was determined to be not gluten-free solely on the inclusion...
  9. ryebaby0
    At least at our local Ruby Tuesday's, the fries are okay. The spice mix is okay too (they bring the shaker out so I can read the label every time) if you like that sorta thing. My husband/son have always been treated very well at our RT... They both eat McD fries without incident, but it is true you have to be vigilant. I would never, for example, take...
  10. ryebaby0
    This is pretty obvious, but I read a lot on WebMD about lab tests. There are several online sites that will explain tests, what they are for, and what out of range values mean. I myself would not call the lab -- they will only repeat what you have in front of you, and tell you which are high or low (which you already have on the test results), but they won...
  11. ryebaby0
    My husband and son are celiacs! One of the hardest things to do is let him be responsible for learning what he can and cannot eat. It's 'way too easy for guys (especially ones who don't cook much) to let you do it, and wives want to show their love and support by doing it. Long-term, that's not gonna work. What about when he goes to lunch at work? What if...
  12. ryebaby0
    My son, and a year later, my husband were both diagnosed with celiac . Our families live fairly far away and as a consequence, we don't see them all that much but when we do, a few things have made life SO much easier: My mom and SIL both clear, disinfect, and mark off a "gluten free" zone in their kitchens, for us to keep our stuff. Mom and MIL both...
  13. ryebaby0

    ARCHIVED Red Robin

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

    Ummm, I got _one_ but the link didn't work. Hm? What's up with that?
  14. ryebaby0

    ARCHIVED Red Robin

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

    Well, this particular Red Robin had no knowledge of and no interest in a gluten-free menu. Nada. It wasn't like we didn't know enough to ask, they were just really interested in getting us to leave in favor of a less labor-intensive group.... And p.s. -- their fries (at least at this location) aren't gluten free, since they are fried in the same oil...
  15. ryebaby0
    I am guessing from the header you already know that the lactose intolerance is a side-effect of untreated celiac? Unless your child was actually allergic to dairy prior to the celiac disease dx, avoiding lactose (but not casein/whey proteins) can be enough. Things can be lactose free but NOT dairy free (take, for example, CoolWhip!) We eliminated all dairy...
  16. ryebaby0
    Just to offer another opinion: we don't have a 504. My son carries his lunch, is permitted to take it to the cafeteria walk-in himself, where there is a shelf for him (and a few other shelves for other people with food allergies). The staff warms up his food and he can skip to the front of the line (there are 900 students in his middle school) and pick it...
  17. ryebaby0

    ARCHIVED Red Robin

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

    Hey Judy: Yeah, I know that they aren't all the same and I did remember that someone had a lousy experience. My celiacs were actually okay with it, I was the one so disappointed. My in-laws live in Exton, so I was hoping we could eat there sometime at their Red Robin (they LOVE to eat out and have made it clear they find their son/grandson's dx overly...
  18. ryebaby0
    Well, he certainly sounds like a likely celiac! The pot belly, short stature, stomach aches, reaction to pasta..fairly "classic" symptoms ..and your ex sounds like a guy who needs a doctor to back you up. The blood test is not so bad, compared to a childhood of illness. If it helps convince your ex, my son was undiagnosed for probably 5 years and was hospitalized...
  19. ryebaby0

    ARCHIVED Red Robin

    ryebaby0 posted a topic in Gluten-Free Restaurants

    We were in Harrisburg PA and made a special effort to get to their Red Robin, since we had read so many good things about the chain. But the waiter just looked at us in horror when we told him what we needed, came back and said the kitchen "just couldn't promise something hadn't been in the fryer" but it was "probably" okay. Trying to decided what...
  20. ryebaby0
    His for-right-now doctor called this afternoon, and now SHE is leaving for vacation, too. She assured me that the peds gi doctors are always consulting on certain cases (and his is one of them, that's true) and I asked if I should be concerned about the elevated glucose. She said no, since it wasn't truly a fasting test(He'd had a donut hole or other bite...
  21. ryebaby0
    My son was back to the doctor a week ago, because I thought he had a UTI he was peeing all the time. I noticed on his lab results (he has bloodwork done regularly for another condition he has) that one of his glucose results were high -- out of range, but not horrendously so-- and I realized he could be developing Type 1 diabetes. So I went home (he is commuting...
  22. ryebaby0
    Is the scope at Wexford or Oakland? We are east of Pgh so have been seen at Oakland and Monroeville (before they closed that clinic). Dr. Lowe is very nice, professional, and very good with kids, not to mention very well respected in the field. He is also the chief of the GI department. He did one of our scopes and I liked how he talked to my son and answered...
  23. ryebaby0
    Thank you so much for posting this! My extended family lives in Rye, and schlepping coolers of food 500 miles is getting old! The internet triumphs again.... joanna
  24. ryebaby0
    My son has been under the care of the GI department at Children's of Pittsburgh for 2.5 years now. You will love these people, especially the nurses. If you have specific questions, let me know and I'll see if we know the answers. We've met just about every GI there at this point Generally speaking though, they are VERY receptive to answering all your questions...
  25. ryebaby0
    My son has also had 4 scopes, although he's a lot older than yours (first time was when he was 9). Ours are done at a major children's hospital, where I'm allowed to stay with him while they sedate him. That's a little unnerving, but it's what HE wants, so I hold his hand while he counts backwards from 10 as they put a mask on him. (He swears he makes it...
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