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kvanrens1

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by kvanrens1

  1. kvanrens1
    Well, after having a discussion with her and her Dad, we (they) decided now was not the time to try eliminating all dairy. It probably is the culprit. We will restart the probiotics. We had her on them the first year of being gluten free. Compared to where we were, the gluten free diet has been nothing short of a miracle for her and us She says...
  2. kvanrens1
    Thanks Stephanie. That is a very good suggestion. I think that is where we should go next but the girl LOVES cheese in any and all forms. She will not be very happy. I have also been wondering about the FODMAPS diet. I wonder if that would help her.
  3. kvanrens1
    It has been a while since I posted. Our daughter is doing great on the gluten-free diet. We recently celebrated her two year anniversary of being gluten free. Just to catch you up on her history (sorry this is long). She was diagnosed as growth hormone deficient when she was around 7 years old. She was too underweight to start growth hormone treatment...
  4. kvanrens1
    We don't drink sodas and rarely give her orange juice because of the acid reflux. She does not like spicy foods so that is not a culprit. I do feel it is probably another food intolerance. She eats lots of lactose free cheese - wonder if it could be casein? She could also eat her weight in fruit. Fructose could be another consideration. She has had...
  5. kvanrens1
    Thanks everyone. I will try some of the suggestions.
  6. kvanrens1
    Our NCGI daughter has been gluten free since March 2012. She is doing so well since going gluten-free. She has gained weight, no more painful stomach aches, she is growing, and most importantly she feel fantastic. She has been able to stop so many medications but we can't seem to get over the GERD/acid reflux that results in painful, loud burping. She...
  7. kvanrens1
    Her stomach was still hurting this afternoon so it was probably gluten. Just disappointed for her because we are so limited in our small town that we usually take food for her when we eat out. We have a PF Chang's and Mellow Mushroom around an hour drive from us. She does fine at Mellow Mushroom so guess we will have to stick to Mellow Mushroom. Hate...
  8. kvanrens1
    Her plates did not have tofu (soy) and she is not sensitive to soy that I am aware of. I requested gluten free soy sauce and like last time they brought it out separate, in its own container.
  9. kvanrens1
    Yes, it was the same PF Chang's both times. I told the server that she had gotten sick the last time we ate there and he said his wife eats gluten free too. He was sure to point out the signature plates when he brought out the food. Just a puzzle because I know PF Chang's is one of the "good guys" that really try with the gluten-free preparation. I was...
  10. kvanrens1
    My 9 year old NCGI daughter ate at PF Chang's in August 2012 for lunch. By that afternoon, she was so sick that she did not make it to the toilet on time. Very embarrassing for her. We have not been back until yesterday. She ordered the same thing as last time. gluten-free fried rice and gluten-free singapore noodles. She did not eat much of the noodles...
  11. kvanrens1
    Just saw this on Yahoo - thought I would share. Great idea if your child is in the care of others. Open Original Shared Link Kristy (by the way, not endorsing in any way)
  12. kvanrens1
    My daughter is one of those that is non celiac gluten senstivity. Her blood tests (incomplete panel several years ago and never retested), endoscopy, and genetic tests were all negative for celiac yet she was very, very ill and in near constant pain. She has been diagnosed with failure to thrive, pancreatic insufficiency (fat malabsorption), lactose intolerant...
  13. kvanrens1
    We have had the gene testing for our daughter through Enterolab. It was helpful for us to know that she does not have the main celiac genes and fits with her negative celiac tests. Her official diagnosis is non celiac gluten intolerance. The test is a quick swab of the inside of the cheek and not invasive. Enterolab does not provide subunit info. ...
  14. kvanrens1
    Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free. Kristy
  15. kvanrens1
    Agreed IrishHeart. Given how bad she felt and how her little body was reacting (pancreatic insufficiency is very rare in children; pain so debilitating that she would get disoriented), I just don't want to miss anything important in her follow up care. I no longer trust the docs to be experts and want to go in educated. If she needs a CBC and CMP, I want...
  16. kvanrens1
    That is wonderful news!! Our daughter had negative tests but also a very positive response to the gluten-free diet. Our Ped GI said he would be willing to provide a letter stating she had Nonceliac Gluten Intolerance for school/camps, etc. Just an option to discuss if you do not get the celiac diagnosis.
  17. kvanrens1
    The positive response to the diet and how she feels if she is glutened is the biggest test of all for us. We rarely let her eat in restaurants because of the couple of occasions of accidental glutening even when ordering gluten free. I love that she takes it seriously and reads the ingredient list on snacks or in the grocery store. Her 5 year old brother...
  18. kvanrens1
    During her testing process, I knew very little about Celiac and gluten intolerance. I trusted the doctors that a negative blood test for celiac ruled out celiac and did not know about full panels. I have since learned that she did not have a full panel and probably should have been retested at some point. She was tested at age 5 and never had another blood...
  19. kvanrens1
    I understand that Enterolab was/is controversial. I could have just tried the diet but she was 8 at the time so making a dramatic change for an 8 year old and wanting her school to appreciate the necessity, I was glad that we did the Enterolab. I was able to tell the school that she had lab results indicating that this was a health issue for her and not...
  20. kvanrens1
    In a couple of weeks, we have a follow up appointment with our daughter's ped GI. To make a long story short, over the past several years she has been diagnosed with: 1. Failure to thrive 2. Chronic Gastritis - treat with prescription omnezeprole 3. Pancreatic Insufficiency 4. Constipation 5. Idiopathic growth hormone deficiency - treat with...
  21. kvanrens1
    We will be going to Opryland Hotel for the night this weekend. I know they are supposed to be knowledgeable about gluten free accomodations. Anyone have any places to recommend or avoid while we are there? Thanks, Kristy
  22. kvanrens1
    I completely understand. When the nurse showed up at our house for the training, my daughter just lost it and fell to the floor crying. I felt so bad for her. I would not have believed a year and a half ago that the daily shot would not be a big deal but it really isn't. She's my hero Good luck!!!
  23. kvanrens1
    Here is the link for the buzzy. She always had such a fear of needles that the thought of daily injections just about did us both in. She says this really helps her. Open Original Shared Link
  24. kvanrens1
    Here is the link for article about growth hormone deficiency... https://www.celiac.com/articles/899/1/Growth-Hormone-Deficiency-Found-in-Children-with-Celiac-Disease/Page1.html
  25. kvanrens1
    Our daughter, age 9, has been on growth hormone treatment for a year and a half. She had the stimulation test too and her levels (peak) were at 3.8 when normal was 10. She was too underweight to start growth hormone treatment which set us on the GI roller coaster. Our daughter's celiac tests (incomplete blood panel several years ago and biopsy) were negative...
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