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About momof2sn

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  1. 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 and have never mentioned it to her teacher for example we have worked on her shapes for several years and she still can not get square and circle right. She seems to be so normal in every other way she just forgets things in a weird way. Has anyone else experienced this with their silly, or any other learning issues?? Thanks for the help, Shealey
  2. Thanks for that info. I really appreciate it. momof2sn
  3. 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? I just need to know what has worked, been essential.....etc. Thanks, momof2sn
  4. 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. I am concerned about the biopsy because, my daughter the silly, her biopsy was negative!!! Her intestine was visually inflammed and no red bumps like my sons. momof2sn
  5. 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. Well, he had a negative panel a couple of months ago. ( he was suppose to have the celiac genetic test and our lab messed up AGAIN!) She did a biopsy of the area. He has no vomitting, diarrhea or constipation. She also wants to do an endoscopy on my hubby now. He has no symptoms either and as I said a negative panel. He does have alot of mucous production during eating and has to blow his nose often. Sometimes that is followed up by sneezing. The doctor said this could be his only symptom. Any thoughts?? Can someone have celiac with no symptoms and a negative panel. Can the doc tell if is celiac with a biopsy?? I appreciate any help!! momof2sn
  6. What dose of fish oil do you use?? Mom son would benefit from taking it. He is nearly 7. Shealey
  7. 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
  8. 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 to her bowel movements or the lack of?? Shealey
  9. 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 typical, so I think the doc is just trying to be safe!!! I just wasn't sure if anyone her had a celiac child that maybe had some issues due to celiac...or maybe I should say the damage that maybe could have been done before a gluten free diet!! My husband and I each had a friend with CP and the arm movements she is making look a little like that, but I am sure we are looking more into it...all I know is it isn't anything a typical three year old does!! Shealey
  10. 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
  11. 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
  12. 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 the PST deficiency that is the problem. It gives the symptoms of a phenol sensitivity. I have wanted to have my son who has PDD, on the autism spectrum tested for gluten sensitivity, because I have heard the same thing such as your body craving the things that are causing you harm. Most Dr's do the RAST testing which is the blood test for food allergies or they do the IgE which is the fast-acting immune respone done by blood or sking testing. I think the one your are interested in is the food IgG sensitivites, this is the test related to behavioral symptoms. I would recommend getting this book, because it has tons of info as well as recipes, but it will answer all the questions you have. If you have anything else specific you want to know PM me and I will look it up in this book for you!!
  13. Taxes

    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??
  14. Taxes

    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-free diet? I read somewhere that you need a letter, but I always efile, and I do my taxes myself. Does anyone know how that works?? Thanks for the help!!!
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