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murphy203

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Everything posted by murphy203

  1. murphy203
    Thanks, ladies. I love the recommendtions to wait a while before trying the gluten-free bun, makes sense!! When I get desperate enough, I'll give Canyon Bakehouse a shot, and if that doesn't work out, mailordered rolls are in my future.
  2. murphy203
    I had a biopsy performed first because I have iron-deficient anemia. My biopsies were positive for celiac, but then all of the subsequent blood tests were negative. I'm still waiting for Prometheus genetic results to come back because if I don't have the genes, there is 99% chance I don't have celiac disease. If I have do have the genes, then I guess I...
  3. murphy203
    I guess I can live without a hamburger bun, but I don't want to! Does anybody have a recommendation? Thanks
  4. murphy203
    ask about tonsile stones...
  5. murphy203
    This must be very hard for you. I know that before my son was dxd with type 1 diabetes, he kept getting inexplicably "sick", until his ability to produce insulin dropped too far, and he lost 15#s ppractically overnight on a 75# frame. I wonder if celiac disease has a similar profile -- gradually worsening conditions until a critical threshold is reached...
  6. murphy203
    I have alot of empathy for you -- I am your reverse, but I still feel like my dx is inconclusive. Which stinks. A week in, I feel better gluten-free, so I would suggest eat what makes you feel good. :-)
  7. murphy203
    I bought Eggo's on an impulse yesterday based on this conversation -- I NEVER EAT EGGOS! How silly, now I have to eat them, but I dont have a gluten-free toaster yet, lol.
  8. murphy203
    BITE lipsticks (Sephora) are gluten-free. Interestingly, alll of my products (not that I wear a ridiculous amount) are gluten-free. I have always been very sensitive to products -- know I know why! My drs both said to just watch lipsticks, but I am only a week in, so what do I know? I did read that women eat 6#s of liptick in a lifetime --- yuck!!!!
  9. murphy203
    <<< Puppy is grain free because the boy can't hold his "licker", cats eat regular food.
  10. murphy203
    Hi Brit, I don't mind at all!! My son had nausea, constipation, and headaches, primariy. He didnt eat meat from the time he was a little kid (his choice, texture thing, with the blessing of his pediatrician) until he went to college and started eating ground beef (again, his choice) -- which, as you can imagine, is a great relief to me. The reason I...
  11. murphy203
    Hi Brit, my son finallly went to the lab this morning, so we should have results in a few days. Your son is adorbale, btw. Mine is 6'4" tall now!!
  12. murphy203
    First meal out since my diagnosis. It was great -- except the waitress threw the leftovers in with husband's normal pizza. Boo....
  13. murphy203
    Not sure how to react, buyer beware?? Unfortunatey, people with posible celiacs or undxd "bleeding" from aemia, etc, cant avoid the latest technologies. What would you suggest???
  14. murphy203
    Devil's advocate: Pre-existing condition = uninsurable. If the ACA is overturned. I have a genetic, progressive neuromuscular disease, proven genetically, Hopkins geneticists advised us against having our kids tested.
  15. murphy203
    THANKS! One last update on my diagnosis: Today, my GI ordered the DGP antibody tests, reordered HLA tests (there was a mixup on the original codes, so I still dont have results) and ordered a slew of nutrition tests. I do have an abnormality at a bile duct and will need another biopsy with different equipment, so that is scheduled in about 6 weeks with...
  16. murphy203
    Congrats!! Here's hoping that a diagnosis never happens or happens far in the future when he is more capable of managing the diet. :-) I went through this with my son when he was a tweenager. His blood tets were slightly elevated but his biopsies were clear. We let it go at that point. He is rerunning the celiac tests now based on my diagnosis as soon...
  17. murphy203
    FTM, I saw my GI today and asked about this specific issue. Their practice does indeed reuse scopes for endoscopies -- they are $40,000 each otherwise. She assured me that they have stringent measures in place to keep things clean, make of that what you will.
  18. murphy203
    This is super-useful to know -- I need to find places for lunches out with my friends!
  19. murphy203
    Quick update: GI and PC have now both dxd me with celiac disease, so I am officially gluten-free. I have read and learned a whole lot from these forums. so I am gonna stick around! I consider myself asymptomatic for celiac disease, except for symptoms related to iron deficiency, so I am curious to see if removing glluten from my diet will reveal symptoms...
  20. murphy203
    nsv, I am challening you on a point cautiously as you are a moderator, but both the national and international guidelines (which are both frequently referenced on this site, and hugely informative) recommend HLA for those of us with ambiguous testing, especially those of us with biopsy positive results. There are many things that can lead to a positive biopsy...
  21. murphy203
    Hi Emma, I am new at this, but I am in sort of the same boat with positive biopsies. Both my PC and GI suggested HLA genetic tests, which cant rule celiac disease in but can rule it out. Its also indicated in national and international journal articles. There is no need to be on a gluten diet for these tests.
  22. murphy203
    Firsttimemama2014, my doctor told me that the risk of death is higher driving TO an endoscopy than from the endoscopy itself. :-) I wonder if you may be experiencing post-partum depression/anxiety? Just something to consider. And congratuations on the new baby!
  23. murphy203
    YES!!! This is exactly what drove me to see my doctor a few weeks ago. Afterwards, I realized that I have every single symptom listed on Mayo's website for anemia. I can't wait to feel better. My doctor did warn me that iron infusions are dangerous, which is why we are trying supplementation first. My hemoglobin was "soaring" along at 8.4. I don't feel...
  24. murphy203
    Thanks for the information. My doctors are heading to a dx of celiac unless the genetic tests come back negative. Neither suggested the DGP tests, I'll ask for them for a lab referral for that and the nutrients. Pretty soon I will know the lab techs by name, LOL. I already know my ferritin level -- it is so low (3) that I will need a blood transfusion...
  25. murphy203
    Good morning, I had an endoscopy recently for unexplained, severe anemia, and the biopsies are "definitely concerning" for celiac disease. I don't have Marsh scores yet, and my followup appointment isn't for another week. My followup TTG and EMA results were negative, with no total IGA deficiency. Still waiting for HLA results -- how long do these...
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