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murphy203

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Everything posted by murphy203

  1. murphy203
    So the grilling season has finally arrived in Maryland. My beer can chicken recipe has been reduced to a sprite can recipe -- my question is, can gluten " vaporize " into my chicken? My son says no way...
  2. murphy203
    RMJ, I am starting to think that it may actually be worse for us without immediate physical symptoms to clue us in when we consume accidental gluten, in terms of maintaining commitment and strict adherence. Vicki, i do have villi damage, and my GI is going to recheck in another month or so to see how I am responding gluten-free because I need another endoscopy...
  3. murphy203
    So this isn't good news, but it is manageable, right?
  4. murphy203
    Kind of sinks that they didn't follow up on iron deficient anemia before, but I am happy to read that you are getting some answers now. Hang in there!!!
  5. murphy203
    I just heaved a huge sigh of dismay, which I know you can't hear, but it happened. :-P Its hard to gage how to procede knowing I have celiac disease but not having huge and immediate symptoms like some. I have been as perfectly clean as I know how to be so far. One niight, after having an Udi's gluten-free bun, I had some acid reflux. For the most part...
  6. murphy203

    ARCHIVED How Precise?

    murphy203 posted a topic in Gluten-Free Restaurants

    I was dxd with celiac disease. But how precise do I need to be? I am almost asymptomatic,, dxd from anemia (I do have all of those symptoms). Can I have pizza made at a local pizza place that predominately serves regular pizzas? Can I have a potato salad from Whole Food deli area doesn't contain gluten (the guy serving me didnt know what gluten is)...
  7. murphy203
    I am pretty sure the whales don't read celic threads -- haha. i get what you are saying about this being tough -- it is. Today I faced a huge tray of Rhocher(?) truffles -- with gluten -- in our break room. Sigh. But on the other hand, there is a ton of stuff we can eat. eta -- interesting symptom -- I think I felt some of that? At first I felt llike...
  8. murphy203
    I am new to this, too, but with both a positive blood test and biopsy, sounds like celiac disease. I'll suggest what my doctor told me before our appointment: live it up this weekend! lol, just making light of a difficult diagnosis. There is a thread above for newcomers with basic tips. I''m 3 weeks in, ans I have a ton of questions still -- this is...
  9. murphy203
    My local groceries (I have tried two) don't carry Canyon, so I went with Udi's. Was pretty disapointed, enough to pull my burger off and eat it with a fork. The world didn't end, and I was able to skip some extra calories, so I think I'll stick with this approach for a while.
  10. murphy203
    Hope it works out for you! I'm going to check out some of these other brands next, but I would say its a solid contender.
  11. murphy203
    You clearly know more about genetics than me -- consider me here for moral support, and feel free to blame the ex -- especially with his history. Yesterday, my dad handily assigned blame to my mom for my bad genes, but it could as easily be him!
  12. murphy203
    Let us know how it goes, hopefully he can explain things properly to you!! When I researched my HLA DQ8 gene, I found numerous references correlating the presence of the same DQ2 and DQ8 genes with type 1 diabetes and other autoimmune conditions, but in reverse predominance: 90% celiac disease cases have DQ2, 90% type 1 diabetes cases have DQ8. I have...
  13. murphy203
    Sounds to me like your best option is to call your doctor back, or wait until your followup appointment (if you have one).
  14. murphy203
    Hi jaggirl, I just got my genetic results back, too, and I found this site to be very useful: Open Original Shared Link Sounds like your son may be a the "low" risk category with a DQ2.2 and another low-risk gene, but you probably should call your doctor and insist on an explanation. Best wishes
  15. murphy203
    Interesting -- thanks for posting the additional information! I totally get why you want more evidence before you accept a diagnosis -- hopefully the next endoscopy and biopsies will provide you with some clinical evidence one way or the other.
  16. murphy203
    Farmers Markets are huge in my state -- you could try that route.
  17. murphy203
    That's really great news!!! Don't assume he has to have stomach issues -- it was anemia that led to my diagnosis. The one stomach issue that I did have (but never reported to my docs beforehand) was recurring (nightly) acid reflux that went away pretty much immediately on the gluten-free diet.
  18. murphy203
    Have you tried eating gluten-free to see if either of you respond? I know its a big commitment to be strictly gluten-free, but you have listed a constellation of symptoms that makes me think its worth a trial. And have you been tested for anemia, because you seem to have many those symptoms. Best wishes, hope you find your answers.
  19. murphy203
    2 weeks in, I had to try to create a pizza crust, mainly because I have PERFECTED the glutinized homemade crust, sigh. The King Arthur's website published recipe was a disaster -- completely stuck to the pan and what I could pry off was unimpressive. So that went in the trash. My Second attempt was with KA's gluten-free bread and pizza mix. it makes two...
  20. murphy203
    I am really sorry about that -- the seizures are terrifying to me (and my son's freshman roommate!!! But that is another story, LOL), and debilitating for my son -- no doubt, yours, too. You have been through the wringer, for sure. I hope it is, finally, something as simple as removing gluten from his diet. WFIW, I had a period of unexplained and complicated...
  21. murphy203
    Just want to say how sorry I am about the seizures. If it were me, and gluten-free is working, heck with a formal diagnosis, just keep him gluten-free. For the record, I have a 22 yo son with type 1 diabetes AND seizure disorder. Fortunately, he responds well to seizure meds and has been more than 2 years without one. Seizures are so darned tough to experience...
  22. murphy203
    So what is an IEL? And wwhat were you dxd with? Sounds like you are seronegative, as am I. what specifically led you to conclude it isnt celiac disease?
  23. murphy203
    Good for you, jaggirl - why should a medical professional object to a second opinion?? Makes no sense to me. And I am seronegative, in full disclosure... ;-)
  24. murphy203
    nvsmom, your commitment to this board is amazing, THANK YOU! I appreciate that you always come in with scientific details and links, especially on this particular "newbie" thread. I know I went to my followup doctor appointments with your scientific papers clutched in my hands when I asked for more tests. :-)
  25. murphy203
    So I did officially get dxd with celiac disease, but I need more evidence because I am just plain contrary. Gluten-free is a lifetime commitment and I need more assurance that I actually have this. I completely get where you and TT are coming from.
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