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TCA

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Everything posted by TCA

  1. TCA
    Thanks everybody. Shar Pei is doing well. Megan is getting another molar in, so she's not so happy, but she didn't sleep quite as much today. We've been working towards surgery for so long now, I feel almost lost now that it's about here. I guess that sounds crazy. Part of me just wants to run away with her so they can't put her through that pain again...
  2. TCA
    Just heard from Vandy about an hour ago. Surgery is a go for 7/25. I was relieved to hear this, but I think I'm going to throw up at the same time. This isn't an easy thing for any child to have to go through, especially your own. Please pray for this to go as perfectly as it can. Thanks for all the support. I think I'm just overwhelmed right now.
  3. TCA

    ARCHIVED Sulfites

    TCA replied to Rhonda's topic in Related Issues & Disorders

    Rhonda, Thanks for the info and the e-mail. Still trying to get in touch with Meg's drs. Our blueberries are from my in-law's bush, so I don't think they're in danger of having sulfites. EBM is Expressed Breast Milk. sorry. It's easy to get lost in the acronyms! Thanks for the prayers. Tanya
  4. TCA
    Thanks Robbin for those beautiful words. Megan has her own personal little team of detectives! Not many little girls can say that. I think most of you saw my post about our ordeal with the snake last night. Megan had a bad night. The gagging is still just completely out of control. I think she's teething too because she's crying a lot and pulling at...
  5. TCA
    My Dad has scleroderma. He hasn't yet tested positive for celiac disease, but I would bet money he has it. I have some info some where that connects it. I think the Enterolab website shows it as related. I'll dig through when I get a chance to see what I have. do you have it?
  6. TCA
    I Never think you are snooping. I'm glad to give the updates. All of you make my day brighter!!! thanks for being so concerned. The prayers keep us going.
  7. TCA
    sorry it's taken me a while to post today. I've been trying to spend all the 1 on 1 time with Meg I can while the boys were gone. She slept all but about 5 hours yesterday and has only been awake about 3 so far today. Everything I read says sleeping a lot can be a sign of heart failure. I'm so glad the drs. will be back tomorrow. I'm anxious to hear...
  8. TCA
    For pizza we use Chebe. It's sooo good for a thin crispy crust. We make it for company and they love it too. For quick fixes for my son I get the kinnikinnik frozen crusts. They are really good. We've also used corn tortillas for pizza and it works ok in a tight. Tinkyada Rocks!!!!
  9. TCA
    My son has the horrible stinky gas with gluten. How long has he been gluten-free? I find that if my son get any CC he has horrible gas. It took us a while to get the hang of the diet and he got glutened a lot in the begining. Could that be happening some? You may know this, but bloodwork and scope will be negative if already on the diet. Testing in...
  10. TCA
    Just wanted to send you a hug. Hope you feel better soon. I get the anxiety and irritability to go with it. I'm just lovely when glutened!
  11. TCA
    I know this must be hard, but I wanted to let you know that some people do have symptoms that aren't so obvious. I went gluten-free for nursing my celiac daughter. I never had serious GI issues and was always on the overweight side, so I never suspected myself. After going gluten-free for a while, I noticed the joint pains I had always had were gone, my...
  12. TCA
    We don't know for sure, just hopeful. Her body is not a well profused with oxygenated blood as a normal baby's would be. Her gut is therefore not getting a lot of oxygen. The GI is hopeful that fixing the heart will get more oxygen to the gut and allow it to work better. He basically has tested for everything he can with now luck, so that's what he's...
  13. TCA
    woo hoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  14. TCA
    Meg had another not so good night. So she's sleeping all morning. Her gagging is just so bad and nothing seems to help. I'm aggressively looking into the sulfite possibility, but her meds and formula are causing a lot of problems. Still trying to figure it all out. I'll be so glad to get a date planned for the surgery. I hope and pray it makes a difference...
  15. TCA
    Judy, so glad the cellulitis is no longer a problem, but sorry the tumors are. You're still in my prayers. Hopefully getting back to some form of normalacy will help. It seems I spend most of my days on the phone with drs, pharmacists, nurses, and nutrtionists. It will eat the day in a hurry. I hope you can figure out the compression thing soon. How...
  16. TCA

    ARCHIVED Sulfites

    TCA replied to Rhonda's topic in Related Issues & Disorders

    Wow! Thanks for the info. I know what you mean about ignorance. We have well intentioned family and friends do stuff for us all the time that ends up doing more harm than good. Foods: I do eat a lot of frozen fish and shrimp, so that could be contributing. About the only corn syrup I eat is in BBQ sauce, but that is easily eliminated. Meg is allergic...
  17. TCA
    VENT all you want and the vent some more. this is the place to do it. I come here for my kids all the time. My daughter has multiple issues, my son has celiac, my hubby has Type 1, so we're balancing a lot and it's working well (except we haven't figured it all out for DD yet). If you get a diagnosis of diabetes, it is so easily controlled now. My husband...
  18. TCA
    That makes me soooooo mad!!!! I can't believe that. One positive thing I see is that Tianna tried to stop them. She didn't want to get glutened!!!!! Isn't that making progress?
  19. TCA
    Yes, as far as I know, but that's not very far these days!
  20. TCA
    Just wanted you all to know that Megan had a really good day yesterday and pretty good today. her gagging is worse. I don't know why, though. Still trying to figure out the sulfite thing to give it a try. Looking forward to hearing from drs. next week.
  21. TCA

    ARCHIVED Sulfites

    TCA replied to Rhonda's topic in Related Issues & Disorders

    Rhonda. Well, I heard back from Neocate. They said the only ingredient that has sufites is the Maltodextrin. It has 10 mg/kg. There isn't much maltodextrin in the formula, so they said it's only a minimal amount. What do you think about it? They also said the corn syrup didn't have any. Is this possible? I'm confused as to if some corn syrup has it...
  22. TCA
    Judy, I really do understand how bad the hassle can be. I hope today goes well and you get some answers!!! It's so hard to be in limbo. Please let us know what all he says as soon as you can!!! Hugs! Tanya
  23. TCA
    I called the 1-800 # in the spring and they said they're all gluten-free.???? I always read the labels and haven't seen anything. My son won't eat the pudding, but loves the jello packs. I need to get the CA list, though. Don't have that one!
  24. TCA
    You might want to consider getting a celiac panel before going gluten-free. Prometheus labs is the one we used. It's covered by insurance if you have it. I'm sure your dr. would know of a local lab. That way you won't doubt your diagnosis.
  25. TCA
    This is a list of foods I put together for my son for people who may keep him. Hope it helps!!! This list has the brands that we buy, but others are fine as long as you know they are gluten free. ALWAYS double check ingredients since they can change from time to time. • Delimex Taquitos - double check ingredients • Oscar Mayer Hot dogs and bologna • ...
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