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TCA

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Everything posted by TCA

  1. TCA
    I for one, am really not afraid of the biopsy. Not that it was all roses, but it's really not a big deal. My son has had 3 scopes and my daughter 1. I'm not saying to rush out and do it, though, but it's really not bad. the hard part is that the scopes did not show celiac disease on my son, who had classic symptoms. We went through test after test for...
  2. TCA
    Just wanted to say welcome! I think I have it too, but just went gluten-free and feel great. my kids both have it. In my sig line there is a link to another discussion on how to get started. I think you will find it very helpful! Hope you all are better soon. I would especially encourage you to go gluten-free ASAP. This can really impact the health...
  3. TCA
    I don't know about these tests either, but you might want to ask them about the normal testing that is done and why it wasn't on her. Ttg IgG IgA and one I'm drawing a complete blank on right now......someone will add t, I'm sure. She also needs to be checked for anemia
  4. TCA
    Both of my kids have HORRIBLE teeth. My son just had oral surgery to get 7 crowns and fill 4 cavities. And, yes, I do brush his teeth very well. My daughter's teeth are coming in and are very misshapen and discolored. My son's dentist said his teeth look like he should be from a 3rd world country and sick with malnutrition. We hope his permanent teeth...
  5. TCA
    Yea!!!!!!
  6. TCA
    Trust me, I investigated EVERYTHING and there is no other way to know if EE/EG is her problem. I would be a proponent of making sure ALL gluten is eliminated and if she doesn't improve then doing the scope. To fix the problem you would probably be put on Neocate only and go through allergy testing. The scope can tell if it is EE/EG, but it can't determine...
  7. TCA
    You might try cooking with something called MCT (Medum chain Triglyceride) oil. It is easier to break down and can add a lot of good calories for you. We mixed it with my daughter's formula and breast milk to help her gain and it really helps. You have to get a prescription for it, but I highly recommend it. We get it through our home health agency.
  8. TCA
    I also just posted to the other thread. My daughter, Megan, was thought to have EE or EG at one time. These are the best resources I found: Open Original Shared Link and Open Original Shared Link Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum. Thankfully her biopsy was negative for EE and EG...
  9. TCA
    EE (and EG) is one of the things Megan was tested for too, but thank God it was negative. If you decide to do another scope, make sure you use a dr. that is very familiar with the disease. It is hard to diagnose and I wouldn't take her to just anybody. The dr. we use is at vanderbilt and has experience with EE. Let us know how the ointment that andrea...
  10. TCA
    I just had to see how things are going. Any word? I know I've checked 20 times in the past couple days!
  11. TCA
    I'm so glad you're seeing improvements. My son started improving after about a week and was doing great after about 3 weeks. My sig line has a link to a thread about how to go gluten-free. Since you have celiac in the family, you may already know all of this, but it's something to look at.
  12. TCA
    If you're going gluten-free, you might want to check out the link in my sig line to a thread talking about how to get started. Good luck!
  13. TCA
    The Neocate does taste AWFUL. I tried it and it has to be akin to cleaning fluid or something - YUCK! Meg is actually on Neocate 1+. It's a 30 kcal/oz. formula as opposed to 20 like the infant formula. It is also nutritionally balanced for that age. It has no taste, but you can get flavor packets for it to help. No luck yet with getting Megan to drink...
  14. TCA
    Sounds like Emmah has it to me. My son had very similar issues and went thorugh testing 3 times. The first 2 were negative and the last was inconclusive. We put him on a diet trial and the results are amazing. Remember that most kids under 5 often have false negatives. The testing is not reliable for them. I hope you get a definate answer, but if you...
  15. TCA
    It took my son 3 weeks for the D to stop. I also made a lot of mistakes at first. My son is 3 too. I tell him everywhere we go to only eat what Mommy says he can because some things make his tummy hurt. So far it's worked. Good luck!
  16. TCA
    I've tried rereading the thread to help you put a plan together. I sent you a PM about breast milk, so let me know about that. Here's my opinions for what they're worth: You said she was on Neocate until 8 mos when all the D and rash started. Were you starting her on foods at that time and maybe that's what caused the problems and not the formula? ...
  17. TCA
    Sorry - I was out of town all last week and just now saw your post. I think I may can help. My daughter is on a feeding tube (G-J) and is 17 mos. We are currently seeing 3 different feeding therapists to try to get her to eat. It's not easy, but we're make baby steps and I see a little more progress each week. These things take lots of TIME so try...
  18. TCA
    don't forget snickers and reece's cups and all that other wonderful fattening chocolate! We do the fritos and stax and cheetos too with no problem and my son is super sensitive. I order the Enjoy Life Snickerdoodles in individual packs too. Also fruit roll ups, jello, dried fruit, raisins, cheese sticks, hormel pepperoni.......
  19. TCA
    Just wanted to add in a little different perspective. My son was born with celiac and my daughter's was triggered after her open heart surgery. We didn't figure it out with my son until he was 3, but at the same time my daughter was having issues so they kinda co-diagnosed each other and I went gluten-free while nursing her and her symptoms improved. We...
  20. TCA
    Just wanted to say that I too had an infant with horrible issues that cleared up when I went gluten-free while breastfeeding. I have never thought I had issues with gluten, but after going gluten-free I found that the joint pains, gas, and irritability I had always had were gone. I feel so much better after going gluten-free, that I'm never going back!...
  21. TCA
    Don't worry Karen. I did not take offense at all, just wanted you all to know that I'm watching out for "our" baby. I'm just so glad you are all so concerned about my baby girl! How could I take concern as a personal slam? Love and hugs!
  22. TCA
    I too was gluten-free/df/ef while nursing my daughter. Hang in there! It made ALL the difference in the world with Meg! You can always reintroduce them later to see how the baby reacts. Megan made it clear that she needs to be gluten-free!
  23. TCA
    I know this is far fetched, but I was wondering if the fevers might be triggered by some sort of allergy. Is something happening periodically that might be missed - Like the exterminator coming or something? I tend to run a low fever when my allergies are really bad. Just trying to help you think of things!
  24. TCA
    When we started it was just me going gluten-free because of nursing my celiac daughter. Then my son was diagnosed and it was just too hard to keep things separate. We went gluten-free in the house and it has been soooo much easier. He's not tempted and I don't have to worry about CC. My sig has a link to another discussion that might have some tips to...
  25. TCA
    Thanks everyone for the concerns about the walker, but this was something that her PT and I discussed for about 2 mos before getting it. We have no stairs that she can possibly access with it. The yard sale was one of my husband's best friends and I cleaned it thoroughly first. We have an exersaucer, which she uses often, but the PT thought this might...
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