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Nevadan

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Everything posted by Nevadan

  1. Nevadan
    One more suggestion: Take a look at this thread under celiac disease - Related Disorders... Open Original Shared Link The thread is long and gets better as it goes - lots of descriptions of neuro related effects of gluten. George
  2. Nevadan
    alanalynch, I hate to be the bearer of bad news; however the idea that there are milder versions/levels of gluten sensitivity is not accepted by the leading researchers today. Gluten sensitivity presents itself with different symptoms/illnesses in different people - some have the intestinal problems while other seem to have more neurological problems...
  3. Nevadan
    Cara, Welcome to the neighborhood. I can second your suggestion to visit the link you listed, particularly for those with neurological presentations and/or for those of us who don't have DQ2 or 8, but do have DQ1's. The site has lots of info regarding what gluten can do to some people even if they don't have celiac disease. I find that site a very...
  4. Nevadan
    You might want to check out this website: Open Original Shared Link They focus more on non-celiac disease gluten sensitivity. Also you might want to read "Dangerous Grains" by Braly & Hoggan (~$10 @ Amazon) It has quite a bit of discussion on non-celiac disease gluten sensitivity. Hope this helps. George
  5. Nevadan
    Since the value in these forums for me is the sharing of experiences, here’s my experience with York Nutritional Labs testing. Comments are welcome, particularly from those who have also had this testing done. After finding I am gluten sensitive by self-diagnosis with confirmation testing by Enterolab, I submitted a blood sample to York Nutritional L...
  6. Nevadan
    What a thread! Is this a record? There's sure a lot of info here for those of us with neurological concerns. To elaborate on my previous suggestion of the BrainTalk forum, in spite of their cutsy "hastypastry" web address, there is a lot of info there but the site navigation is not as easy as this one. If you go to Open Original Shared Link ? you...
  7. Nevadan
    All concerned with neurological effects of gluten may want to check out another forum: Open Original Shared Link Check out their "Gluten File" (second item on their index) for starters. I find this site an excellent complement to this one. It's more oriented to non-celiac disease gluten sensitivity with lots of neurological info and experience among...
  8. Nevadan
    Regarding testing, in my opinion the gluten-free diet itself is a valid test. Try it and if you see improvement, then try some gluten again and see if your symptoms return. I did that and found that most of what I call my overt symptoms (gas,bloat,constipation) were gone in 48 hrs. I also have osteoporosis and mild anemia and hope those are improving on...
  9. Nevadan
    Try a search for "reflux" (which is synomous with heartburn in the WSJ article) in the Predx,Testing & Symptoms forum. I did and found about 147 hits, many of them reporting decreased reflux symptoms after going gluten-free. Reflux is also frequently listed as a possible symptom for gluten sensitivity including celiac disease e.g. Dr Fine, Enterolab...
  10. Nevadan
    Hello A, Since you have anemia, I would recommend getting a bone density test done to check for osteoporsis. Both are related to gluten sensitivity. George
  11. Nevadan
    Sounds like you are making a very reasonable choice. I wholeheartedly second Nini's recommendation to read "Dangerous Grains" (It's ~$10 from amazon .com if that's an option for you). I sense in the tone of some of the replies to your thread that celiac disease is serious and "just gluten sensitivity" is not so serious. Read "Dangerous Grains" first...
  12. Nevadan
    DianeByrd Question 1: Did your child's 6 wk gluten-free dieting directly precede the bloodwork and endoscopy? If so, that possibly made those tests invalid. Question 2: Did the gene test check for the non-celiac disease gluten sensitive genes or just the usual suspects, HLA-DQ2 and DQ8? Enterolab does check for these other versions. (I'm HLA...
  13. Nevadan
    Hi All, Except when eating out, life isn't as bleak as you may think. Lots of Chinese dishes use rice noodles which are ok - just watch out for the soy sauce. There's also several gluten-free pasta's available these days, often at regular grocery stores. For those who miss bread, there's some pretty good gluten-free recipes that do well in bread machines...
  14. Nevadan
    Today's Wall Street Journal (Oct 10, 2005) has a featured article in the health section addressing heartburn, reflux, etc titiled: The Hidden Dangers of Heartburn How a common health problem is quietly becoming an unsuspected killer By TARA PARKER-POPE Staff Reporter of THE WALL STREET JOURNAL October 10, 2005; Page R1 Since the article is officially...
  15. Nevadan
    Just a little more elaboration on my anemia situation. My mother had anemia all her life too and it got much worse as she got older and did not respond to supplements. My older brother also has anemia which has worsened as he got older - he also has osteoporosis as I do (and one of his sons). Based on this, our anemia and osteo are almost certainly genetic...
  16. Nevadan
    Tiffany, My anemia is not too bad - My Red Blood Count (RBC) runs about 10% below the minimum of the "Acceptable" range. I'm not sure if this effects my energy levels since it's been this way forever. The only iron supplement I've ever taken is a multivitamin which has 30% of the Min Daily Requirement of iron. Several dr's had told me repeatedly not...
  17. Nevadan
    I have recently used York Nutritional Labs for their ELISA testing. Their claim to fame is that they only require a couple of drops of blood - taken at home with a collection kit they send. You do a pin-prick in the finger like diabetics have to do. I didn't find it painful at all. The downside is that they are very slow. I mailed them my samples over...
  18. Nevadan
    First, I assume you self-diagnosed by dietary challenge: went gluten-free and saw some symptoms improve and maybe tried gluten again and saw the symptoms worsen. Dietary challenge (your self-diagnosis) is a valid, and perhaps the best, form of diagnosis. But if you still think you need a "professional" dx, you might want to look into Enterolab. They specialize...
  19. Nevadan
    I hate to say it, but it doesn't take much reading on this forum to find that dr's are generally pretty clueless when it comes to gluten sensitivity testing. You should get a copy of the lab work that was done so you can see for yourself what tests were done - I wouldn't trust that to any dr. Check some of Kaiti's previous posts for a list of the full...
  20. Nevadan
    Tiffany, Sorry to muddy the waters; however, I also have anemia (and osteoporosis). I did the g/gluten-free diet challenge on my own and found some other gastro symptoms ( gas, bloat, constipation) went away within 48 hrs so I knew my body didn't really like gluten. After going gluten-free this past June I subsequently was tested by Enterolab who confirmed...
  21. Nevadan
    Mark, Do you know specifically what tests you just had done? As Kaiti just said, gluten sensitivity isn't an allergy. George
  22. Nevadan
    It is generally accepted that distilled alcohols are gluten-free, IF the mfgr doesn't add anything containing gluten for color or taste. I prefer wine anyway which is fine (thank goodness). Beer and other malt based drinks are usually based on barley malt; hence they contain gultens. George
  23. Nevadan
    My neurological symptoms have not completely gone away. but they are improving. I didn't notice much improvement until just recently so it took about 3 months before I noticed any improvement. From what I read, neurological symptoms are very slow to improve - in fact somewhere I read "not getting any worse is considered an improvement". This is why it...
  24. Nevadan
    YES! celiac disease is only one presentation of gluten sensitivity. There are several HLA-DQ gene types that are more related to neurological symptoms such as you have described. Two suggestions: You might want to have a DNA test done by Enterolab who checks for a broad variety of HLA-DQ types, not just the primary ones related to celiac disease. ...
  25. Nevadan
    Hi Shannon, I'm pretty new to all this as well. I too was tested by Enterolab and found to have HLA-DQB1*0602,0602, equivalent to a double dose of DQ1. Our genes come in pairs, one from the father and one from the mother; hence the two numbers following the *. Also keep in mind that there is still a lot to be learned about gluten sensitivites meaning...
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