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researchmomma

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Latest Celiac Disease News & Research:

Everything posted by researchmomma

  1. researchmomma
    Take all this paperwork to a new GI that specializes in Celiac disease.
  2. researchmomma
    This is horrible and the path that my daughter was clearly on. Sad that you had to Dx yourself. That is what the endocrinilogist accused me of on Tuesday. She accused me of standing in the way of my daughter's health. Are you freakin' kidding me? I am her ONLY advocate. Not my husband, not her pediatrician, not the ER docs, no one but me. I am the only...
  3. researchmomma
    I am so glad you found a good doc. That is huge. I am hoping to find a doctor who understands the realities of Non-Celiac Gluten Intolerance. Our current GIs thinking is if you aren't Celiac, you can eat gluten. That isn't helping me! Or maybe I just let this play out and see how it goes. J is still on gluten and fighting and bickering with...
  4. researchmomma
    It is true that you start wondering about people who have all kinds of things going on and they couldn't figure out why they are sick. To avoid CC, we use squeeze bottles for everything we can. However, I do believe at some point I might be able to get my husband to try gluten free to see if he can get off his meds. Just a two month little test.......
  5. researchmomma
    lol Exactly!
  6. researchmomma
    IH: Yes, I do need a spa day. I can't wait to get her back to eating gluten-free. Hubs and I both felt that J would want the lab test showing that she is gluten sensitive so we ordered it. Now if it comes back that she has no sensitivity I am not sure what the heck I will tell her, lol. Knowing my luck, this will be the case. Regardless she...
  7. researchmomma
    I am going to jump in here because I am the queen of pregnancy tests. I had five miscarriages and secondary infertility so I know the ropes. So I have some questions for you: 1) what day of your cycle are you? In other words, are you testing before your period is due? 2) What brand of pregnancy test are you using? Some of those tests are WAY more...
  8. researchmomma
    I know! You did tell me that and so much more. Sure is nice to see it so quickly and significantly. We ordered the gene test (all HLA DQs not just the 2 and 8 that Prometheus gave us) and the antibody stuff too since her IgA was too low to be run properly. I think something will show up as gluten sensitive. However, my J is stubborn like her...
  9. researchmomma
    Completely agree! See my post above.
  10. researchmomma
    Thank you for the nice comments and it sounds like you are on the right road too. We can't feel guilty for what we didn't know about. Yes, I am considering asking my doc for the Celiac panel now that we are both eating gluten again but I don't know if I care. I am really supporting her but maybe I should consider it.
  11. researchmomma
    I would be interested in this too. We are Scandinavian. My grandmother died of duodenal cancer and had pernicious anemia. My mom has Graves and parathyroid tumors. So we are all interested in seeing if our families have a genetic gluten sensitivity.
  12. researchmomma
    Nora_n, we lived in Europe for two years and the docs wanted to investigate her short stature but we were moving back to the States and I didn't want to start something there I couldn't finish. Such a bummer. I thought it would be easier here. NOPE. Holy Gluten Batman So we went on gluten yesterday in hopes that we hear from the GI about scoping...
  13. researchmomma
    Doesn't it just make you want to scream? Doesn't it make you wonder why doctors don't know more about it? Our GI tested our daughter only for DQ 2 and 8. She didn't even care about the others that are considered alleles for gluten sensitivity. That ticks me off. I paid 300 bucks for that test that insurance probably won't cover and I could...
  14. researchmomma
    Thank you for adding your comments. It is helpful. I am really frustrated by the medical profession which has been unprofessional in my opinion.
  15. researchmomma
    I will have her eat one without syrup. I think she will come to the conclusion herself anyway though. I am going to have her keep her diary very carefully this week and she may be able to see it that way herself. BTW, I was gluten-free with her and now back on gluten and I feel off! Nauseas, tired and crampy. Gluten is yuck! I agree with your...
  16. researchmomma
    I am not offended or upset at all. And I appreciate all of your help and advice. I think my post came off wrong because I think your advice not to be manipulated is sound. I am just at a loss. I know you have battled much more with doctors than I have and thankfully you have answers now. Anyway, thank you to you all. I really appreciate this...
  17. researchmomma
    I have done this but was derailed by her declining weight, delayed puberty, short stature, etc. She has been off and on a great eater. When she is feeling well she eats meats, veggies and starches. She doesn't like junk or processed foods. When she is sick (she physically looks ill), she takes a few bites and is miserable. So it isn't that she is a bad...
  18. researchmomma
    Hey, before I read your post I just had the water talk with her. Yes, she is taking Culterelle but I did forget it last night. Yesterday was a mess. Thanks Domestic for your advice. When she is on gluten we are down to 400 calories per day and at 70lbs and 12 years old, she can't afford that. I will try to let her make her own choices perhaps but...
  19. researchmomma
    Well I don't believe her. She said she was faking feeling better because she we were talking about our friend's daughter who is getting a car for her 16th bday. Her parents said they were doing that because she was such a good girl, never complained or asked for anything. We were discussing that (not with her but she overheard) back in August. J said she...
  20. researchmomma
    My daughter said she has been faking feeling better. Lovely
  21. researchmomma
    Keep me posted on how it goes.
  22. researchmomma
    good idea!
  23. researchmomma
    This is what I was wondering! She would be thrilled to be able to eat Eggo Waffles again, lol. Well maybe I will have her go back on gluten until we hear from the GI. She didn't call today and I have a sneaky feeling that she is writing us off! I did order her negative gene results from Children's. She is gene negative for DQ 2 and 8. No other info...
  24. researchmomma
    The misdiagnosis of Celiac is one of the saddest things I have seen. It is heartbreaking. Your history is another reason why I wanted to go gluten-free without prilosec. So here is my question for you and whomever else has an opinion: she has been truly gluten-free for two weeks so if we put her back on gluten as soon as they call to tell me they want...
  25. researchmomma
    This is exactly what i wanted to do. If gluten-free resolved it, big smiles all around. If not, then we would have to resort to prilosec I suppose. I can tell you that even after two weeks of being gluten free, she was better by the second week. Better attitude (maybe she felt like she had some control over how she felt!), less stomach pain and less gas...
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