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momof2sn

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Everything posted by momof2sn

  1. momof2sn
  2. momof2sn
    Hello Everyone, I have a five year old silly who was diagnosed at 21 months old. She has been gluten-free since the diagnosis. My concern is she has appeared to have some difficulty remebering things. Her teacher said some days she is on it gets everything and then other days she appears to have no clue. I noticed memory issues before she started school...
  3. momof2sn
    Thanks for that info. I really appreciate it. momof2sn
  4. momof2sn
    Hi All, My dd is 4 and we are having our first case conference in a couple of weeks to get prepared for kinder next year. I was wondering what particular things I should ask for. Do most of you just have a 504 for you child?? Has anyone had luck with asking for a gluten-free lunch? Isn't the school legally responsible for providing a gluten-free lunce...
  5. momof2sn
    The celiac genetic testing was done. His pulmonoligist and allergist ordered nearly every food and enviromental blood test as well as immune definicy. I think the GI also does a nutrition test. They took 9 tubes out of the poor guy....they couldn't do it while he was under either. The GI doc mentioned she may have to check his panel every 6 months for awhile...
  6. momof2sn
    Hello All, Everyone here has always been such a great help so I have some more questions. My daughter is the only celiac in the family. My hubby carries the HLA-DQ8 gene, but has a negative panel test. My son who is NOT celiac had an endoscopy for EE. The esophagus was better, but the intestine had red bumps all over. She said it could be possible celiac...
  7. momof2sn
    What dose of fish oil do you use?? Mom son would benefit from taking it. He is nearly 7. Shealey
  8. momof2sn
    OH MY GOSH!!!! THANK YOU!! THANK YOU!!!! THANK YOU!!!! This will give me a start. I trust doc's but yet I don't. I wanted to go into our neuro visit with some info and was wondering if celiac had anything to do with what is going on. I SOOOO appreciate this. Did I say "THANK YOU" Shealey
  9. momof2sn
    When my daughter was first diagnosed I wanted to try digestive enzymes as well and our doc said no, because it would make the intestines lazy, basically they would become dependant on them and not do the job on their own...the intestines that is. He said just to follow the gluten free diet and the body would heal on its own. Are the stomach cramps due...
  10. momof2sn
    That scares me a little because I have one already with autism. My son has PDD. But she is very different. We have talked to the doctor and she wants us to see a neurologist, just in case. She had the cord wrapped around her neck and was blue when she came out. She also has a liver disease and then celiac. It could be nothing, but my kids are anything but...
  11. momof2sn
    Yeah, She is caught up...just has some odd jerky movements with her arms when running, kicking a ball etc. Just didn't know if it was related to celiac. She walked at 14 months and rolled over at 11 months. We have always been told she has tight muscles and was in physical therapy for awhile. Shealey
  12. momof2sn
    I was just wandering if anyone has a child with Celiac that has gross motor delays?? My daughter has had them since birth, she is now 3. She was late at rolling over and walking. She is now having some jerky arm movements while trying to run etc. Anyone experience anything like this?? Shealey
  13. momof2sn
    Hi I just wanted to say I have a book called "The Kid-Friendly ADHD & Autism Cookbook" by: Pamela J. Compart, M.D. & Dana Laake, I got mine on Amazon. I know your child is not autistic or have ADHD, but it talks about what you are asking. I have been researching some of this myself. The books tells how phenols are beneficial to the system; it is...
  14. momof2sn
    Yeah, I have already read How to do it, I was just wanting to know from other parents if it has been worth it for them??? Or should I not waste my time adding up all the cost??
  15. momof2sn
    Hi All, Well, I put this topic here because I am sure there are alot of parents that have included their celiac kids on their taxes. This will be my first year with having celiac expenses, and I was wondering is it really worth it to deduct the cost of gluten-free food?? What about a letter from the doctor stating that your child or children are on a gluten...
  16. momof2sn
    Hey all, I was wanting to know if anyone knows of a chex mix substitue or has a recipe. It is one of my sons favorites and would like to replace it?? What about a lactose free butter or even a low lactose butter? Anyone have any suggestions??? Thanks
  17. momof2sn
    Hi Charis, Welcome to the board!! I just want to encourage you and say that YOU CAN DO IT!!! This is one of the most overwhelming things at the beginning, but everyone here is awesome. My daughter was DX in May of this year. I remember just spending hours on this forum and asking and reading. Take the advice... everyone here has been in your shoes...
  18. momof2sn
    Yeah, that is what I am worried about. I don't want us to not know about his levels, because I would hate for him to be 50 and finally have symptoms and then he has really damaged his body and put himself at risk for even more problems. Would he need to see a GI or can he just go to a regular doctor?? Our ped GI recommended the gene testing and is now kind...
  19. momof2sn
    My daughter was diagnosed in May with Celiac Disease, she has the HLA-DQ8 and we just found out today that so does my husband. He is having no symptoms and is always the healthiest in our house. I want to know what the next step is? Does he have his levels checked?? What have you done?? Any opinions??
  20. momof2sn
    My daughter is 2, I stay home with her, I think I would be in the looney bin if I had to work right now. In our church, it is run by volunteers, the nursery that is, and not the same person is there every week and sometimes who I drop her with is changed by the time I pick her up. The eating area is just a table in the middle of the nursery, right there where...
  21. momof2sn
    I have a few questions..... My daughter was diagnosed in May so we have the diet under control and have had a second round of blood work that came back great!! I said that because I am having a dilema with playdates and church. I have stopped going to church because I don't trust that they are doing what I am asking, but my main question is... what about...
  22. momof2sn
    Julie, I was just in your position just 5 months ago. I was very anxious for my kids. I had both of my kids scoped on the same day. We had no idea of the celiac when we went in for my daughter, she was 20 months and my son was 5 1/2. The only symptom my daughter had was chronic diarrhea and large belly. I didn't sleep much the night before due to my anxiety...
  23. momof2sn
    I'm glad you brought that up, because I am a nervous wreck anymore when I go to church. I know people are hearing me when I tell them what she can't have and pack her her own snacks, but I still freak out. Our nursery is only one room. Honestly how can they keep a two year old away from the other kids snacks and I'm sure they don't wash the other kids hands...
  24. momof2sn
    Where do you live? Maybe someone here could recommend a good doctor in your area. My daughter had a negative biopsy, but positive blood work for the gene and high levels, so we were given the diagnosis. They wanted to repeat the biopsy and we refused. If you have some time to wait as you said, then use any resource you can to find a doctor who will give you...
  25. momof2sn
    Thanks everyone for your help!!! I feel kids have to live too, but then I am not sure how much is to much. I am lucky that my daughter is not too sensitive, or maybe I haven't figured out when she is being glutened. I just feel bad for one having celiac and one not, I guess they both have to make sacrifices for each other!!
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