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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    No one has a clue as far as they are telling me. This is for my DS- I feel like I can't trust these labs anymore. These labs and poor growth sent us to major Celiac player. As I said- 2 weeks apart but processed at different labs with totally differing results? It's making me completely crazy. I have had iron test for donating blood where one...
  2. StephanieL
    Has anyone had this happen? We had one test 2 weeks ago with <10 tTG (<20 is negative) ONE WEEK LATER- different lab tTG of 25 (<20 is negative) Nothing changed. Nothing unusual. Nothing new.
  3. StephanieL
    4 months? Wow. That seems unreasonably long to me! Sarah,I hope your meeting with the nurse goes well! Let us know if we can help in any way!
  4. StephanieL
    lol Interesting! I'll have to think about that! That's one slick Mama there!
  5. StephanieL
    So we went to a Dr. here at home yesterday (I needed to find one here on the off chance that we needed to do a scope/challenge or whatever). He agrees that it's unusual that his levels mystically are WNL after 4 years when sent off to another lab. He ordered new labs and we had them drawn yesterday. I am really interested in what they have to day. He...
  6. StephanieL
    There is something in the allergy world call the "full bucket" theory. This is where you can have exposure to A and be okay. If you have exposure to A and B you may be okay. If you are exposed to A and B but a little more B it tips that bucket and they you have issues.
  7. StephanieL
    He's not sick The only thing I was worried about was WHY the numbers weren't coming down while on a gluten-free diet for 4 years and why he is not gaining a single oz. There aren't any other worries which is why I say we don't need to go to Mayo. We have a lot of immunity issues with him and I just needed confirmation that there isn't another AI issue...
  8. StephanieL
    The labs were drawn at several labs and many were preformed at the same lab. I don't know that they were all done at the same lab thought. It's been at least 4 different labs that we went to but where they sent them I need to look into. SMRI, full panels were run. Totals were fine and WNL. I am not talking him on another wild goose chase out to Mayo...
  9. StephanieL
    It's totally my assumption that they will want to challenge and scope. The Dr. is only in on Thursdays so I most likely won't know anything from them till late in the week. We have an appt. with a new local GI here on Monday. I am wondering if I have them run the labs again what they would read. Perhaps that's more for my wanting an answer than anything...
  10. StephanieL
    He got a hold of my nieces sandwich when he was about 3 months gluten-free. He had maybe 2 bites and was up screaming in pain all night. Not sure how they explain that one because Dr. Fasano doesn't see how that could have been a reaction to the gluten. And Thanks. It's so hard and I feel like I have put him through so much already and am not...
  11. StephanieL
    This is all my sons stuff. He's 7. We continue to test the tTG's because they have never hit normal. They thyroid issue was dx about 2 years ago. Again I thought that would bring down his tTG's to normal but again, they didn't....or did they and the tests being done over 4 years have all be done wrong? He's been gluten free since he was 3.5 so about...
  12. StephanieL
    What do you like to eat? What meals are best in your mind? What do you eat a lot of? Starting with whole foods will be the easiest place to start. Think meat, veggies/fruits and starch (rice, potato, and all the other gluten-free subs out there!) Then start looking for things you miss- snacks, desserts, junk.
  13. StephanieL
    Here's the quick version: started with a 2 1/2 year old. -Super low Vit. D (it was at 7 or something, normal low was 35) Sent to Endo. -Endo does Celiac blood work. 122 tTG. Sends us to GI -2 GI's (I wanted a second opinion) scoped- Scope is negative for Celiac. Dr. Fasano said we can go gluten-free and see what happens or scope every 6 months...
  14. StephanieL
    Beth, 504 is the section of the Americans with Disabilities act that relates to schooling and providing free and appropriate educations to ALL students inclusive of any disabilities, Celiac being seen as on for this case. They provide accommodations for students that the school is LEGALLY required to follow. If you haven't had one, you may not need it BUT...
  15. StephanieL
    Sorry, yes! Our 504 isn't for anything learning based. If there are learning issues as well then wouldn't you be looking for an IEP with perhaps a supplemental 504? I'm not sure how that all works. Sorry!
  16. StephanieL
    Some of our accommodations in our 504 pertaining to my DS's Celiac disease are: -Absolutely NO food that isn't from home. -He sits at a desk at the end of the lunch table that is cleaned with a fresh towel and water before he enters the cafeteria -Access to the bathroom as needed -Vetting of art/craft supplies -No food used in lessons or as class...
  17. StephanieL
    It's hard to say how likely it is. You said your Mother has Celiac but isn't dx so without a dx there could or couldn't be a genetic link depending on if she has it definitively or not. As for all the testing, allergy testing isn't 100% accurate but a negative result is about 90% true. People often run to allergies when there is eczema but about 80%...
  18. StephanieL
    Our Dr. DID consult with the top people which is why I am so beyond annoyed. He doesn't have any S&S right now aside from no weigh gain and still elevated labs. He has developed another AI disease (hypo assuming Hashi's thyroid). Seeing as how he's already developed another AI I don't want to keep letting it slide like an oh well. I don't think...
  19. StephanieL
    He was asymptomatic for the most part when this started, he was 3. His tTG's have come down but even after 4 years never normalized. That's what we are trying to figure out. Why his tTG's are still elevated.
  20. StephanieL
    Yeah I guess. Not really sure why. He had a sky high tTG, negative scope and all the genetics. They said we could do gluten-free and see if his tTG's came down or we could rescope every 6 months till there was damage. Yeah...no. He was 3 when all this %*@& started. I wasn't going to scope my 3 year old every 6 months thanks! So we follow the advice...
  21. StephanieL
    Right now the frustration is with the medical machine School has been great really. Family/friends- ehhh. I did have to laugh a few weeks ago when someone stated "Oh I can't risk putting this med in a cooler!" when I was explaining a way she could have easily done so. A way we do with DS's epi pens. Ya know, the only think to keep him from dying when exposed...
  22. StephanieL
    nvsmom, I just wanted to send good thoughts and love. I haven't read through everything cause I don't have anything constructive to say I'm sure but want you to know I am with you in frustrations and wondering when the ride will stop and just ready to throw in the towel. You are doing the best you can and I'm sure you've gotten some amazing advice from...
  23. StephanieL
    Why do things have to take SO long and be SO freaking difficult when dealing with this kinds of "stuff"? It shouldn't take a week and a half to hear back from a Dr. or for blood tests to be gotten. I should't have to do all this work. I am obviously willing to do the work but should I really have to? And WHY am I doing it? I feel like I am just spinning...
  24. StephanieL
    Maybe a corn/cilantro/red onion type deal?
  25. StephanieL
    Kids eat. A lot. I wouldn't be looking for trouble where there doesn't seem to be any. Mine asks for more while still chewing the last bite of the last thing she ate.
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