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researchmomma

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Everything posted by researchmomma

  1. researchmomma
    I know it was at Prometheus but I have requested a copy of the test. I wonder if they only tested for DQ2 and 8? I will let you know. So frustrating. She is a walking poster child for celiac. She has excema all over her hands right. The nurse said the GI wants her to take her Prilosec and see us in Feb. I am starting gluten free with a journal...
  2. researchmomma
    Wow, those symptoms are horrible. I did read that article that you posted and was amazed. I think where I am confused is if you are not Celiac, does gluten cause those types of serious issues? It must since there are so many non-celiac gluten intolerants on this website. We are keeping a journal so hopefully that helps. The cool thing about my daughter...
  3. researchmomma
    I think I was in shock and I am better now. I just wanted that diagnosis so my daughter would take it seriously and my husband would be on board. However, my daughter decided that she wants to go gluten-free so we went to Whole Foods and bought some breakfast foods to start the day tomorrow gluten-free. We met a woman who is not celiac but is gluten-free...
  4. researchmomma
    Thanks. My daughter doesn't think prilosec is the answer so she wants to try going gluten free to see if it helps. It will be difficult during the holidays but hopefully she feels better soon and maybe that will motivate her.
  5. researchmomma
    Results of the gene test are negative. So of course now my husband wants to put her on the prilosec instead of going gluten free. This is going to be a huge battle.
  6. researchmomma
    Thanks All. You know my DD is going gluten-free soon and I told her to keep her eye out for things that Celiacs and NCGI tweens and teens need so we can maybe market something! You never know, eh?
  7. researchmomma
    Hi, we are going about things backwards. My DDs bloodtest was inconclusive due to low total IgA (not deficient) but the doc counted it as negative. She refused biopsy unless gene positive. Her symptoms are very consistent with Celiac or gluten intolerance. The lab lost her blood so we had to redo the test so we have been waiting for 2.5 weeks for results...
  8. researchmomma
    Thanks, I will try. My daughter is so tired of being sick and tired. She is very upset that the lab isn't ready. The office nurse called and urged us not to go gluten free yet. They want her to start the reflux meds today. My daughter doesn't want to as she thinks it is a waste of time and wants to see if going gluten free helps before she results to...
  9. researchmomma
    The gene test won't be ready until next week, mid week. I am seriously considering making her gluten free now and saying the hell with it. I am so ticked off. They lost her blood the first time so we had to redraw.
  10. researchmomma
    Great article! Especially in regard to epilepsy. So my SIL sent me her paperwork. Her Celiac Panel was not positive. her AGA IgA was 1.41 and less than 1.99 is considered normal. However, the doc said it was slightly positive (maybe compared to what she has seen in her practice) and her IgE was higher than normal suggestive of Chronic Fatigue. She...
  11. researchmomma
    I have suspected gluten in myself for a long time. Soooooo guess what? My sister did this genotyping thing for her entire family and the results are online. They do the HLA DQ typing and even go to alpha and beta level. She had markers for Celiac (meaning they are consider new theories on Celiac Disease). Here is the info from the online results: q...
  12. researchmomma
    Irish, you are like a God send to me. Thank you! I am so sorry about the miscarriages and infertility. That is horrible. There really are no appropriate words. it makes me wonder about all the unexplained infertility. I had five miscarriages and secondary infertility. I can only imagine a small part of your grief. Thank you again for all of your...
  13. researchmomma
    Wow, sounds familiar. The appendix CT scan showed swollen lymph nodes and fluid behind her appendix. They were able to pinpoint that. Her blood work work was normal and she was afebrile. Funny, we got the "lots of poop" thing too. They said they could see it backed up. My 12 year old is not really consider late for her menses but late in blooming...
  14. researchmomma
    Oh you make me cry. I am blaming myself for all the years I thought she was a hypochondriac with so many aches and pains. Always asking myself why she couldn't be happy and normal. Ugh. Funny, my Celiac neighbor kept telling me she should be tested. I am anxious to move on and get her healthy.
  15. researchmomma
    Yes, we are definitely waiting to see if she is gene positive. If she is, I can get her biopsied soon and then go gluten-free. So I am just poisoning her daily with gluten until I get that result (and maybe a biopsy). I would like the diagnosis if there is one. However, just like you said, if she is gene negative, she is going gluten free anyway. Both...
  16. researchmomma
    I am a crying mess right now. Thank you for your kindness and all of the information. I heard about Dana Korn's book through my friend. Anyway, my printer is going crazy and I am creating a binder. I really think gluten is her nemesis and I can't wait to get her started on a gluten free diet. I am pretty upset at how many symptoms my doctor didn't...
  17. researchmomma
    She had this which is probably not associated: MESENTERIC LYMPHADENITIS not enteritis.
  18. researchmomma
    That was super helpful. I forwarded to my husband and mother. I am so on board. Gluten free diet is in her future. Very soon. Oh and I may be confused on the lymphocytic enteritis. It was something similar to that. What they saw was swollen lymph nodes near her appendicitis which explained the pain she was having.
  19. researchmomma
    That is really interesting about the leaky gut thing. When my DD went in for suspected appendicitis they dxd her with LYMPHOCYTIC ENTERITIS. They could see it on the CT scan. Isn't that associated with leaky gut? I believe it is also associated with Celiacs but I need to do some more searches on that. We would love to get her off epilepsy meds since...
  20. researchmomma
    Oh and I read the articles on depression and WOW!!!!!!
  21. researchmomma
    Yes, you are right about the family members. I have seen even diagnosed Celiacs be in denial about what it can do to your body to ingest gluten contaminated foods. AHHHH, ok you are double gene positive. As I said my fear is that she is gene negative or DQ 9 which Europe and Middle East considers Celiac but the US doesn't and then she will not grant...
  22. researchmomma
    Ciamarie, as I sit here, impatiently waiting for our gene test which if positive my doc is "willing" to do a biopsy in February (over my DEAD body will I wait until February), I am still trying to figure out my odds of Celiac vs. Intolerance for my daughter. From what I have read it would seem that gluten intolerance doesn't effect the gut but it does effect...
  23. researchmomma
    Thank you for this site. I think I would have gone insane by now. I just need someone to chat with that isn't biased. My friends have been mostly supportive over the years with my daughter's issues but I don't tell them much anymore due to the vast amount of issues. It would be so great to have many of her symptoms "cleared up" with a GFD. I guess we...
  24. researchmomma
    Yes, I will ask for that. Does gluten intolerance cause stunted growth, etc? I mean if she isn't Celiac do I just have faith that gluten intolerance causes the same issues like excema, low IgF-1, etc?
  25. researchmomma
    Hello, I run clinical trials and thought I would do a quick search to see what was going on in the celiac indication. I thought this trial was interesting. It is for those that are gluten free but not formally diagnosed (maybe self diagnosed). Check it out: Open Original Shared Link There was also a trial for those dxd celiacs that are still GI symptomatic...
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