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About KaybugsMom

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  1. THANKS TO ALL!! I really appreciate the support. I honestly do. I have been in tears about it all day since i actually got the phone call today. At first the nurse just told me a generic "stricter diet" and I broke down, said I don't understand, why not do this freaking test BEFORE to office visit, now I have tons of questions....she had no answers, didn't even know which doc in the practice I saw!!!! It was bad. I was crying like a whacko. But the doc called me later and we are going to meet with the dietition I guess and try to to figure it out. I am taking all your advice and starting a journal of sorts. I "thought" I was doing things right, but I guess I have been missing things. Thanks again! Kat
  2. Hello, I am new here, and lost for answers. My 11 year old has celiac, diagnosed in Dec with bloodwork and biopsy. Our initial visit her GI doc said that her case wasn't so severe that she couldn't "cheat" now and then. Well she has a little anxiety problem to go along with all this and she does NOT cheat, she has done such a good job, she eats so well, makes such good choices, has not complained. She likes most all her food. Her initial test that sent her to GI was one that was >100, not sure which one, but it was supposed to be less than 4. So we knew she had it pretty much. When we went for her recheck last week, the doctor asked how it was going. I felt proud to say she was doing great! No more mouth sores, no skin lesions (her only symptoms we knew about) things were great! They called her their poster child! He said he wanted her number to be less than 40 on this bloodwork, if it was near 80, we were in trouble and had to make drastic changes. I laughed and said I don't see how we could! Well, I had the labs faxed to my job and I felt like I was hit by a truck because her number was 138!! I actually sat there and cried over it. What do we do? I feel like a fool, like I sat there in his office like a moron! I am a nurse, I work with a nutritionist, I am not stupid about it, I can't figure out what is going wrong?? She is going to be crushed when we tell her. Anyone have any ideas why this number is just as high? It is a total waste of the past 6 months in my opinion. Sorry to whine. You just try to do the best for your kids and when you think it hasn't helped a darn bit, it is defeating. -Kathy