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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    As long as they look for the other markers...some only look for those 2 and that's it plus new ones are being discovered everyday. To confuse things even further some genes are considered celiac associated in one country but not in another, like mine.
  2. ravenwoodglass
    There are many here who understand your frustration all too well. Don't they even know that a colonoscopy won't find celiac as that impacts the small not the large intestine! Sometimes we have to let our body tell us what it needs or doesn't. I hope the diet helps your issues and we are here to help in any way we can. ((((((((((((((((((((((((((HUGS)))))...
  3. ravenwoodglass
    Unfortunately your doctor is misinformed. Many have those genes and never develop celiac and there are celiacs that don't have those genes. Gene testing is a relatively new science and much is being learned every day but not all doctors keep up with the research.
  4. ravenwoodglass
    Did your doctor do biopsies to look for celiac when he did the endo? If he did try to get your hands on the results as he should have taken at least 6 from different areas. That said there can be false negatives with biopsies and also with blood tests. Since you have had the endo you can go strictly gluten free, also dropping dairy, as soon as the blood tests...
  5. ravenwoodglass
    Not all celiacs have skin issues and not many vomit. The symptoms you are listing are typical celiac symptoms. One of the other posters, Marlie gave you the tests that you should ask for. They are tTG IgA EMA IgA AntiGlidian IgA and IgG Deaminated Gliadin Protein (I think that's what the DGP stands for) IgA and IgG. and also the Total IGA because if...
  6. ravenwoodglass
    That would be IMHO very unlikely, for one thing if all your issues do not clear up with the diet then being gluten free is not going to effect testing for other problems. I don't know if it is the case for you but many times by the time folks get to the point where they are questioning celiac they have had many tests that have already ruled out stuff like...
  7. ravenwoodglass
    If you can I would suggest you go to a different GI doctor who knows more about celiac. You have clearly positive blood work and some doctors would even skip the biopsy since biopsies do have a high rate of false negatives. False negative blood work is common but not false positives. If you do let this doctor do the biopsies make sure he takes at least 6...
  8. ravenwoodglass
    You may be past the time limit for Paypal but do check. If you used your Visa contact your credit card company today and let them know what happened. They should be able to credit your card.
  9. ravenwoodglass
    Celiac is very strongly genetic and all 1st degree relatives should be tested after one is diagnosed. I do hope your son doesn't have false negative results and if they are positive it would be a good idea for your husband to be tested also. One thing you may want to consider is making the whole house gluten free after all testing is done. Once folks...
  10. ravenwoodglass
    Celiac is found in all nationalities.
  11. ravenwoodglass
    My brain fog got so severe that I couldn't read any more because I couldn't remember one sentence when I would start another, I couldn't name a fork if you held it up in front of me and had times when I would get in my car and not know what to do with the keys in my hand. I was very fearful that I was developing dementia or something along those lines. I...
  12. ravenwoodglass
    I personally would not agree with that but I am not a doctor. Some would consider me to be gluten intolerant rather than celiac because I don't show up in blood work and am not DQ2 or DQ8. I had a great deal of autoimmune problems that cleared up on the diet.
  13. ravenwoodglass
    Personally I agree with your GP. Both are autoimmune, both need to be just as strict with the diet although sometimes it is different parts of the body that are attacked by the antibodies. Some consider blood test and/or biopsy negative folks to be gluten intolerant rather than celiac although the both tests have a high false negative rate.
  14. ravenwoodglass
    I don't tolerate the Bob's flour because the garbanzo flour, sorghum flour, and fava flour are not something my system can handle. You might want to try a flour without all the bean flours like Tom Sawyer or Pamela's baking mix and see if that is better tolerated. While the hot dog's are gluten free they may just be too greasy for your system right now. It...
  15. ravenwoodglass
    Are you eating mostly whole unprocessed foods? Gluten can be sneaky and some items are gluten free by ingredients but can be heavily cross contaminated. The best example I can think of is Frito Lay products. They have finally given a good bit of info on their website but still don't list CC risks on the bags. It does take time to heal and you do need stuff...
  16. ravenwoodglass
    Glad to hear your ped is taking this seriously. Do be aware that celiac is not an allergy so he may show negative to wheat on an allergy panel but still have celiac or gluten intolerance. I didn't use Enterolab for diagnosis and they don't strictly 'diagnose' celiac but they can tell you if he is forming antibodies. There are false negatives in both blood...
  17. ravenwoodglass
    It really doesn't matter whether it is celiac or 'gluten sensitivity' you need to be just a strict either way. Do give the diet a good strict try when your done with testing. I also had a very early menapause and when I finally got diagnosed my OB/GYN told me that it might reverse but it was too late for me. You are much younger than I was though so hopefully...
  18. ravenwoodglass
    This is actually the place to 'dump' your feelings. I know how you feel. I was literally dieing and they kept running the tests over and over and then saying 'nope your not celiac' and never told me anything about what it was they were even testing for. I was sent to one of the best hospitals in NY where they would draw up to 13 tubes of blood at a time and...
  19. ravenwoodglass
    First off they didn't do all the celiac blood tests you should have had done. Also the tests have a 20 to 30% false negative rate. My doctors not acknowledging this cost me many many years of my life. I had to get close to death before I finally got diagnosed. I am a firmly diagnosed celiac and gene testing 5 years after diagnosis showed I don't have either...
  20. ravenwoodglass
    Amazing isn't it. I ran into someone I hadn't seen in years a few days ago. Her nickname for me was 'Bones' her first comment after a big hug was 'Your not bones anymore you look great!!!'. The funny thing is I actually weighed more back then but it was all bloat.
  21. ravenwoodglass
    If you are really doubting your diagnosis then you could always go back to a regular gluten diet for 2 weeks to a month and see what happens. Keeping in mind of course that symptoms are not all GI related they can be neurological so you would look for an increase in things like depression or anxiety etc as well as headaches and joint muscle pain or fatigue...
  22. ravenwoodglass
    Yes although personally I like the Wegmans Rice milk for most stuff.
  23. ravenwoodglass
    Did they check to make sure the med was gluten free? That sounds like a pretty severe reaction and personally I wouldn't take another dose until the doctor gets back to you. Don't be afraid to call the doctors office back and insist he get back to you. Here is NIH info on the drug that may be helpful Open Original Shared Link
  24. ravenwoodglass
    I could be wrong but I think most of the risks are for celiacs who are still eating gluten. In my own case there was a whole slew of the 'associated risks' that resolved once I had been on the diet for a while and healed.
  25. ravenwoodglass
    Can your doctor give you a list of them and the makers? I usually call the makers directly. I do not ask if the med is gluten free as in some places wheat starch is considered safe, I ask if the med contains wheat in any form and tell them I have an allergy instead.
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