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raeskids

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Everything posted by raeskids

  1. raeskids
    My little guy wsa failure to thrive as well. We are now at over 2months gluten free post biopsy. He has still not gained any weight. He has more energy, but no weight gain. He was accidentally exposed to some gluten and it set him back for almost 3weeks. I really don't see how 2weeks can give an adequate picture. My doctors told me to wait for 6 months...
  2. raeskids
    Samuel has been gluten free since January 20. Until March 10, he seemed to be doing really well. We went out to eat for my husband's birthday and I ordered some food from the gluten free menu for myself and gave him some -- there must have been some cross-contamination. His bowel movements are terrible. He's got a diaper rash that bleeds, and I've seen...
  3. raeskids
    Help, please? It's been a bit over a month since my son was diagnosed with Celiac Disease (via biopsy, genetic screens, and labwork). Anyways, he is still not gaining any weight. We've taken him off of lactose for 3months as well. He seems to have more energy than several weeks ago, but is now lighter than when he first entered the hospital. He...
  4. raeskids
    I am so sorry. My son, Samuel, was just diagnosed a month ago. He was terribly sick, and one of his initial symptoms was constipation. He was also bleeding in his stool. They kept telling me kids just get constipated and on and on. Before we ended up in the hospital Samuel was sleeping most of the day and could hardly walk without falling. We ended...
  5. raeskids
    Betsy, You have to really fight for your little one. My Samuel is 16 months old and it was a battle to get them to listen. I came in as the "nervous" mom and left as the "brilliant" mom who knew that her child was sick and had celiac. I was getting the run around in the regular clinics. I had a friend who knew something was wrong, called her father...
  6. raeskids
    Can you tell me more about the cdiff infection? My Samuel has an underlying infection (we believe) and we are seeing an infectious disease/immunologist next week. Thanks!
  7. raeskids
    I live in the Cities and worked with the GI Doctors at Childrens Hospital. Let me know if you need more info, okay?
  8. raeskids
    Just have to ditto the Udi's Bread. We love that stuff. Do you have a Trader Joes by you? I've found many things that are great. My 16 month old is very very very picky -- hardly eats at all right now -- but he will eat their veggie (gluten free) chips at times. Good luck!
  9. raeskids
    How long did it take? I'm quite nervous we're on the the tube feeding route. He's up and moving around, but not absorbing hardly anything. May I ask what your doctor's final straw was with regards to the feeding? Just curious. Thank you!!
  10. raeskids
    He's perked up today. They put him on some antibiotics for the pneumonia, and it seems to be helping with the energy level. They've allergy tested (RAST) for almost all other food groups and he is allergic to none. Including wheat -- although that isn't the gluten in wheat. Ironic, isn't it? He still hardly eats. And when he eats he eats in waves...
  11. raeskids
    Thanks for all the replies and helpful hints. Samuel got very sick this weekend and was diagnosed with pneumonia. They are attributing his weak immune system with his damaged gut. We've got appointments with an immunologist and infectious disease doctor. There is also a chance that Samuel will need immuglobins via iv and parental nutrition. I'm...
  12. raeskids
    My son is 16 months old and he's been sick a great deal for the last 9months. He gets fevers every 3-4 weeks. At first the doctors didn't link that with Celiac, but once he was diagnosed they told me that his immune system was very taxed. (I had been telling them this for months....) Anyways, right now he's been running a 104+ fever. How do I get his...
  13. raeskids
    I don't know if this will help or not, but my son had elevated Eosinophils in all of his labwork. What other labwork did they run on your son?
  14. raeskids
    I'm fairly new to the boards. My son Samuel (16months) was recently diagnosed with Celiac. Would you let me know what you think of these lab/biopsy numbers? They've told me that he's quite nutritionally deprived, but I'm wondering just how low these are. I've listed his result first in bold and then the range average. Disaccharidase Lactase 1.3 -- range...
  15. raeskids
    They have not prescribed a supplement nor have I found one. Do you have a recommendation? The doctor told me to give him Poly-vi-sol, but I haven't checked to verify if it is gluten free. I am slightly overwhelmed right now -- I know it will get easier -- but, phew, the learning curve is steep! Thanks.
  16. raeskids
    We just went down this road with my 16month old. I didn't take him off gluten till after he had his biopsy. However, we ended up at the Children's Hospital because Samuel was so sick. Once in there, we ended up with a pediatric GI doctor immediately. We had a biopsy done within 2days of being discharged. Then Samuel ended up back in the hospital for...
  17. raeskids
    Thank you all for your help and suggestions. I am really grateful. Samuel has been eating some lately, but I can tell that he's not absorbing much in nutrients. He's quite pale still. When you reached a diagnosis what other issues did they look for? Samuel has red blood cells that are kicked out prematurely -- is that possibly due to an underlying...
  18. raeskids
    My little guy, who was just diagnosed with Celiac, was told to remain of all lactose for 6weeks since Celiac can cause lactose intolerance. In fact, in his biopsy and endoscopy results he had little to no lactase in his system. I believe the reference range was that you should have around 24.5 uM/min/gram protein and anything under 15.0 is abnormal. My...
  19. raeskids
    Just a quick reply regarding breastfeeding. My 16 month old was just diagnosed with Celiac and the nutritionist, GI Doctor, and his pediatrician all told me to go on a gluten free diet since he still breastfeeds. An interesting fact -- we had almost weaned Samuel, and then when his undiagnosed Celiac was flaring up (he ended up in Celiac Crisis) he...
  20. raeskids
    Hi everyone. I am new to the boards, but wanted to introduce myself and my story. I'm Rachel and that's my little Samuel in the picture -- he has just been diagnosed as Celiac. We've spent 7 days in the hospital, and that includes one day where he had an endoscopy and biopsy which showed damage consistent with Celiac Disease. He's tested positive in...
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