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Nevadan

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Everything posted by Nevadan

  1. As a career scientist (not in medicine) I'll make a few comments addressing why doctors generally do not feel any requirement to justify not agreeing with something. Hope this doesn't sound too pedantic. Most of what we call progress in the last couple of centuries has been made based on use of the "scientific method". This method is based on having...
  2. I think Nancym's last paragraph is an excellent recommendation. I also followed her same path for the same reasons and unfortunately encountered the same lack of interest from other family members - pretty common I hear.
  3. Nevadan

    ARCHIVED Dq1

    I am double DQ1 and gluten-free/CF for about 1 1/2 yrs. Most of my symptoms were neurological. They are responding however slowly to the diet. Re your question #1, I think there is considerable evidence that the gastro-intestinal effects are but one subset of the more general gluten intolerance, so typical celiac tests may not show positive even though...
  4. I have a pair of DQ1 genes. I've been gluten-free/CF for about 1 1/2 yrs. In addition to some gastro symptoms, I had peripheral neuropathy(PN) symptoms(numb toes/foot) before going gluten-free/CF. The gastro symptoms (bloating, gas, constipation) responded positively within a few days. The PN after about a year seemed to be be better, certainly no worse...
  5. Yep, my false positives were similar to your experience. Makes one wonder how many false negatives there were. I also thought their "96 Food" testing was a little misleading in that there appeared to be some redundancies (e.g. wheat gliadin, wheat gluten, whole wheat were 3 of the 96 tests). I could not get them to comment on this.
  6. I had a similar bad experience with York Labs about one year ago. Very poor customer service, and I never did get any of that "one year support" they advertised to help me understand the meaning of their tests. Also for what it's worth my results included what appeared to be (by food challenge) several false positives. Sagemoon, good luck with your BBB...
  7. Regarding an "official diagnosis", you might want to consider the future impact on being able to get affordable health insurance should you ever need to purchase your own as opposed to an employer's group policy. Most insurance companies consider celiac a pretty big negative and will either not insure you at all or will charge more exorbinant rates. My...
  8. Looks like I did a typo in my original post. The website address should be: Open Original Shared Link For some reason the link I first posted worked orginally but clearly not now. If all else fails you can give them a phone call and they will send you a brochure describing their guest ranch. Their phone #: 307-742-6072. Their snailmail address is P.O...
  9. In my opinion, for most people the best test is to try the gluten-free diet for a few weeks and see if your symptoms respond. Depending on your present eating habits, eating gluten-free may not be so difficult (think vegetables, salads, simply prepared fish, poultry, and meat - there are some very good gluten-free cereals available as well; and a good gluten...
  10. A couple of responses: Susan, The ranch has 7,000 acres so hiking is vitually unlimited. Even if you just hang around the house the scenery is outstanding and the hospitality is hard to beat. It's a very relaxing place. There was a family who were there for the week also and the father had had nothing but bad horse experiences and only came because...
  11. My wife and I recently returned from an extremely enjoyable gluten-free week on a guest ranch in Wyoming, actually on the WY/CO border between Laramie, WY and Ft. Collins, CO. The owners of the ranch, a mother-daughter combo are both celiac and devote one week per month to gluten-free clientel. We found this to be a really great experience on an authentic...
  12. My $.02 worth: Why the preoccupation with a "proper diagnosis"? If you feel better not eating gluten, why is that not sufficient? If you are tested with negative results, are you going to continue eating things that make you feel bad? Besides, going the conventional medical dx route insures that your medical record will show that you have celiac disease...
  13. What I've observed indicates to me that one of the primary causes of friends' reactions is that they are consciously, or uncounsciously, envious that someone will/can actually take responsibility and control of their health issues without taking a pill. I've actually had one good friend with tons of gluten sensitivity symptoms try gluten-free for a few days...
  14. I would like to reiterate the value of food elimination testing and keeping a food log versus various other lab testing. My experience with food intolerance testing was lots of false positives (how many false negatives I have no idea) and confusion. I did the ELISA IgG food intolerance test with York Labs (I think they have subsequently changed their name...
  15. I posted this link about coping with celiac disease several days ago - you might find it relevant. Open Original Shared Link George
  16. My goal is 100% gluten-free and 99% Casein free. Breakfast: Mesa Sunrise Cereal w/ 1/2 cup blueberries, ~1 oz raisins, 2 tblsp flaxseed meal, 1/2 banana, soy or rice milk, 1 c coffee Snacks (spread pretty evenly during the day): 1 oz almonds (~25), equal weight walnuts, ~6 dried apricots Lunch: tuna w/ wasabi mustard & pickles sandwich on...
  17. I ran across this article which I think most will identify with: Open Original Shared Link George
  18. More regarding the Lame Advertisement test. I emailed Cell Science Systems Ltd at Lame Advertisement.com again asking for the details of the double blind testing evaluation mentioned in their previous email. Their prompt reply included a paper, "Lame Advertisement, A New Test for Food Induced Problems in Medicine?" by Drs Fell, Brostof, O'Donnell, O'Connor...
  19. Here is the response I received from Cell Science Systems Ltd at Lame Advertisement.com regarding the difference between Lame Advertisement and ELISA testing. It's pretty sparse on specific references and detailed explanations. It does mention double blind studies by gives no link to detailed summaries of them. On the plus side, their response to my inquiry...
  20. Trents, Thanks. I missed the reference to Lame Advertisement when I skimmed thru the website. George
  21. While doing some web searching for "Lame Advertisement", I ran across several sites critiqing various food intolerance testing. The following link is one example which does not mention Lame Advertisement but does discuss ELISA, so I thought that just for the sake of seeing different views I would post the link here. I have no idea of the validity of the...
  22. Linda, Thanks for the post with your experience. Loss of wine would be a real bummer What else did you eliminate? If you add any of these back without consequences, please post. I also have what appears to be "arthritis" which comes and goes and so far doesn't correlate with any food elimination I've tried, including wine. George
  23. How about a good gluten-free cereal with rice, almond, or soy milk? I found I much prefer these to regular milk anyway. Add some blueberries, banana, etc and you have a good healthy breakfast very quickly. My preference for gluten-free cereal is "Mesa Sunrise" by Nature's Path - it's corn/amaranth/quinoa flakes. George
  24. gluten-free breadcrumbs are available at Wild Oats in my area and I'm pretty sure stores such as Whole Foods will have them also. Another suggestion is "Lara Bars" which I find very tasty as well as very healthy - all natural. In my area they are available at both Wild Oats and Trader Joe's. I find them convenient to carry along for those situations where...
  25. If you don't mind, what were your symptoms before you found that you are only wheat intolerant, and how was that determined. I'm beginning to think that I'm in the same category. I've been gluten-free for 7 months but don't have the genes for celiac disease even though I had some gastro symptoms (bloat, gas, constipation) which improved with gluten-free...
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