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TCA

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Everything posted by TCA

  1. TCA
    My daighter can't eat directly yet, so everything is through me, but I tried oats once and she immediately had blood back up from her feeding tube, vomiting, lethargy, and constiption. I haven't bothered trying again. So glad she's doing so good now!
  2. TCA
    You are definitately a great mom, even if they do have to pick you up off the floor from time to time. Soya- I think something may be lost in translation. Soy sauce may be what you're talking about. If so, most varieties contain wheat, but some do not. It's a brown liquid sauce eaten mostly in Asian dishes. This may not be what you mean, but...
  3. TCA
    I do hope you find the answers you're looking for. The diet trial was all we needed, I wish I had know that 2 years ago! Keep us posted with the progress.
  4. TCA
    Bless you for taking such good care of your daughter. The diet trial did it for us after inconclusive tests, so you're probably not missing much without the GI. My son grew a lot quickly, but is leveling off some now. He's still skinny, but so is his dad. He's also a healthy skinny, if that makes sense. He's not going to be a linebacker! If your daughter...
  5. TCA
    You are so wonderful for Emma. She's so lucky to have you. So glad she's sleeping some now. We had one of those weeks and it will kill you! did you see the PM I sent you? There's an enteral formula called Compleat Pediatric that might work for Emma. We tried it for Megan without success (but she can't even handle the Neocate), but it's supposed to be...
  6. TCA
    Your son sounds sooooooo much like mine. He was having D so bad so many times a day. I would get him cleaned up and then he'd go again. His little bottom just had a bloody diaper rash and I tried to take very good care of it. I did everything I knew to do and then some and nothing worked to get him to go potty. he would urinate, but not poop. In Jan...
  7. TCA
    I've also noticed a lot of wheat free products have oats.
  8. TCA
    The monitors should have come with a test solution in a little bottle to test the accuracy of the meter. It looks like it's time to get it out!
  9. TCA
    I've been using rice flour a lot with no problems. I thought Pamela's was in a dedicted facility, so I ruled it out. How did you react to it, Chelsea? I have a patch of skin between my fingers on my rt. hand that the dermatologist thinks is DH. It flared up big time after eating the Bob's Red Mill, then I got lots of tummy troubles. Lasted...
  10. TCA
    Thanks so much for checking in. She's gotten better as the week went on and the formula got out of her system. Wed. was the last day she had blood in her spit up. I'm supposed to try egg and milk free until next wed to see if it will help her, but I may go a little longer. I actually got about 7 hrs. sleep last night, so I'm doing better too. I'm still...
  11. TCA
    My son had 2 neg. biopsies and inconclusive bloodwork with a very hight IgG and a slightly elevated IgA. We did a diet trial and he's a different child without gluten. D has stopped, he potty trained in 3 weeks, rashes gone, growth taking off, moods better. It really is a miracle. Can you get rice flours and such there? I would think this would be...
  12. TCA
    I wonder if it might be helpful to give them a feeling of empowerment. Explain why you are so concerned for thier health and why it is imperative that they be 100% gluten-free. Ask them what would help them to stay on the diet and then be willing to meet them at least half way, even if it means making the house gluten-free. I know you have a large family...
  13. TCA
    My daughter is on Prevacid for GERD. She has been on both the solutab and the oral suspension. The solutab is great, but it has lactose in it while the oral suspension and the capsule don't. This helps my daughter's pain associated with GERD so much. It's almost more important than her heart meds when it comes to daily comfort. Some people have a higher...
  14. TCA
    I used Bob's Red Mill All Pupose Flour Mix in tonight's dinner and having lots of symptoms. Anyone else have problems with this product? I also made Pamela's bread for the first time, but I don't think that was it. Bob's flour is the only thing I can think of.
  15. TCA
    I made the Pamela's yesterday. I also used an egg sub and it was great. In most breads you can just sub water for the milk and be fine.
  16. TCA

    ARCHIVED Neuropathy

    TCA replied to Jennhaz's topic in Coping with Celiac Disease

    Thanks so much for the info. I called my dad immediately and looked the phone # up for him. He also had diabetes, so this is a God-Send for him. I do hope you feel much better soon!
  17. TCA

    ARCHIVED Neuropathy

    TCA replied to Jennhaz's topic in Coping with Celiac Disease

    Nanceysb, who is the Dr. in Atlanta? My father lives a couple hours from Atlanta. He suffers from polymyalgia and is in debilitating pain. I'm convinced that gluten is his problem, but his gp and neurologist think I'm crazy. I'd love for him to see this dr. it has been a very long road for him. He's trying to come off of oxycontin right now and it...
  18. TCA
    I've thinking of you wo much. Thanks for theupdate. While a feeding tube may sound scary, it's not bad at all. My dauther has had one all but about 2 weeks of her life and it's literally been a lifesaver for her. If it gets her the nutrition she needs, then it may be best for while. I'll send my prayers since I don't know what else to send. Hugs.
  19. TCA
    My story is the same as everyone else's here for my son: Inconclusive bloodwork, 2 negative biopsies, tried the diet, decided it was a miracle, never going back. His Ped GI decided not to put anything on his chart for now because he said the biopsy is the gold standard and it was negative. He said a celiac diagnosis has a lot of negative implications for...
  20. TCA
    I agree with other's replies. It is something you have to decide for yourself. I do hope you feel better soon. I hate that your family isn't supporting you. We went through that with the kids until they all saw how much better they were doing without gluten, now they're believers too.
  21. TCA
    Sounds like they're not doing complete testing then. IgA is specific for celiac disease, but the IgG shows irritation in the body. The TtG is representative of villous atrophy, and I forget about the endomysial. They should run all 4 of these antibodies plus the IgA deficiency to get a complete picture of what is going on. It's also a good idea to do...
  22. TCA
    did they run an Ig A deficience test? Many people with celiac have an IgA deficiency which skews the test results. The did not run this on my son either. He had a slightly eleveated IgA and a very high IgG with the Ttg being normal. They did a biopsy (2) and did not find celiac, but did find irritation. He had the classic symptoms, though. My intuition...
  23. TCA
    I get them too, also an allergy sufferer. I know it sounds crazy, but I started putting carmex on one and it worked. Burns a little, bu heals it right up. I've done the saline thing too, but got better results from carmex. I figured if it worked so good on chapped lips it had to work on chapped other things!
  24. TCA
    Ihave a Celiac 101 sheet I did for my son. PM me with your e-mail if you'd like it. As for bath products - Suave, Dove, anything by unilever will list gluten as wheat, rye, barley, or oats. Garnier Fructis is gluten-free too. I applaud your efforts. You are doing a great job and it will get easier. Most restaraunts list gluten-free menus on their websites...
  25. TCA
    Thanks so much for the prayers. They are carrying us! We only tried the alimentum about a month or so ago. Our son wasn't able to tolerate any formulas either, but he was able to nurse, so keeping my supply up wasn't such a big deal. I still have a can of the alimentum. I think what I'll do is keep it on hand in case my supply drops again. It seems...
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