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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Welcome to the board. The celiac blood tests are pretty specific to celiac. Doctors are starting to acknowledge that positive blood work is diagnostic. While ideally you should have had an endoscopy after you had positive blood your doctor may have feared that you would show a false negative on the endo. You could go back on gluten for a couple months and...
  2. ravenwoodglass
    Talking to a counselor or psychologist may not change the fact that you have celiac but it can help you change your very negative attitude about the diagnosis. You can live a very full and active life with celiac. It is not the end of your world it is the beginning of one that is healthier and if you allow it to be, happier. I do so hope you can...
  3. ravenwoodglass
    I hope you get a clear answer. If his tests are positive then it is advised to test all first degree relatives periodically.
  4. ravenwoodglass
    Hopefully Cyclinglady has been able to set your mind a bit more at ease. Not much to add but congatulations and hope all goes well.
  5. ravenwoodglass
    I had lots of other diagnoses before they finally figured out that I was celiac. This will be long. I was diagnosed before the more accurate DGP tests were available and was a false negative on whatever older tests they did. Something not uncommon with folks that have severe DH. Almost everything resolved in time with the diet. I did need to have physical...
  6. ravenwoodglass
    Just being able to smell gluten food souldn't be an issue. What are you eating for breakfast and lunch? Are you getting enough protein and carbs for those meals? If you aren't that could contribute to you being irritable and tired.
  7. ravenwoodglass
    You have only been gluten free for 4 days so is there any way you can call your GP and pick up a lab slip or have them call the lab for a full celiac panel immediately? If you have been seeing your doctor for your problems that may be possible. Ask to speak to a nurse when you call but be aware that one may need to call you back after speaking with the doctor...
  8. ravenwoodglass
    You say you had pasta. Did you use the same colander to drain it that you used to use for gluten pasta? That would get you. If you haven't already do read the Newbie thread at the top of the Coping section. You have only been gluten free for a short time and it can take some time to heal. Many have good days and bad days in the beginning and hopefully...
  9. ravenwoodglass
    Welcome to the board James. You have been through a lot. ((((((((((((((((((((((hugs)))))))))))))))))))))))))))))). Does the rest of your family still eat gluten foods? If they do you may be getting some cross contamination (CC). CC happens when tiny amounts of gluten get into someones system by doing things like sharing things like butter, nut butters...
  10. ravenwoodglass
    I hope your not eating gluten free at this point. You need to be eating gluten for any celiac testing. If you are gluten free you need to be eating at least a couple slices of bread worth of gluten for a couple months before you have testing done. You also may have DH but if you have recently been on prednisone for the rash you will need to wait for...
  11. ravenwoodglass
    Welcome to the board. Your bone pain should resolve and it doesn't mean you have any bone loss at this point. My bone pain was horrific and I had it for a long time and it did resolve on the diet. It took a while but I had it off and on since childhood and wasn't diagnosed until my 40's. Your's may resove fairly quickly hopefully. Do be sure to continue...
  12. ravenwoodglass
    You only need one celiac gene to get celiac. Celiac is not a disorder where you have to have 2 copies of a gene to develop. That said you didn't get any relief from the diet and 2 years later something else was discovered and treatment of that resolved unresolved issues. You might want to consider going back on gluten for 2 or 3 months and then getting antibody...
  13. ravenwoodglass
    Gluten Ataxia is NOT a psychological aspect of celiac! Psychological aspects do not form brain lesions (UBOs) that can affect balance and cause other issues like aphasia. While some of your advice is sound some of it borders on being dangerous. I have to wonder with your constant referrals to your blog if your main purpose here is to sell the book you have...
  14. ravenwoodglass
    This is not a bright side. Just ask any Diabetic who has had an amputation. You need to be very careful until this resolves. Carefully check your feet at least a couple times a day. Make sure you don't have any blisters or cuts and if you do clean and cover them and if any signs of infection show get to your doctor promptly. If you have cuts serious...
  15. ravenwoodglass
    I have to agree with Gemini. About 4 years ago I took a job at a local motel cleaning rooms. I was undiagnosed and very ill for most of my life and am very sensitive. A glutening for me means a day of suicidal ideation with severe D followed by a 3 day GI bleed and about 3 weeks of joint and muscle pain and balance issues. The crumb level can be quite high...
  16. ravenwoodglass
    What are your readings? Can you have your doctor do an A1C for you? That might answer some questions as far as diabetes goes. I don't know alot about that subject so hopefully others with more knowledge will chime in. I hope you get things figured out soon and the anxiety gets better. It can be a hard fight, as I know from my own experience.
  17. ravenwoodglass
    "She said elimination diets can actually cause a person to become more allergic/sensitive to the food they are eliminating." When that happens we call it being 'glutened'. In most cases people don't react to something they haven't eaten in a while for no reason,IMHO. Can you get a second opinion? In a child so young it can be important to get a diagnosis...
  18. ravenwoodglass
    I take a good multi and sometimes add a seperate Biotin supplement that has some vitamin C in it. When first diagnosed I also took a sublingual B12 as I had heavy nervous system impact. On the rare times when I get glutened I take liquid Pepto to deal with any stomach pain and if I absolutely need to leave the house Immodium. I will also take an...
  19. ravenwoodglass
    If you like hot cereal Cream of Buckwheat is my go to. It is a good source of protein for a cereal and easy to digest. I use a generous amount of cinnamon and it fills me up for quite a while.
  20. ravenwoodglass
    It is possible that you are experiencing a large gas bubble(s) pushing through a tight turn in your intestines. I have intestines that are a bit twisted and have felt the same sort of thing on occasion. If things don't improve be sure to mention it to your doctor though.
  21. ravenwoodglass
    IMHO positive blood work trumps negative biopsy. Damage can be patchy and be missed and some doctors don't recognize changes that are seen before full villi destruction. Personally I wouldn't eat gluten before your followup. Instead make a note of any and all improvements gluten free and then in 6 months or so do the blood test again and see if those positive...
  22. ravenwoodglass
    If that was the only IGA test you had done then you haven't had a celiac panel run. That test is simply a test for you total IGA. That is supposed to be run with the panel to make sure you make enough IGA for the panel to be accurate. You do need to be eating gluten for the celiac testing. If you are already gluten free that will cause a false negative as...
  23. ravenwoodglass
    I can't say it will be the case for you but I had stomach pain until I eliminated soy. Funny gluten free I don't get stomach pain when glutened but still do if soy sneaks in. What has been most effective for me in relieving the pain is Pepto Bismal liquid.
  24. ravenwoodglass
    Hopefully your doctor told you NOT to go gluten free until after you saw the GI doctor. You do need to be actively eating gluten if the GI wants to do an endoscopy. As to the liver enzymes many celiacs have these elevated before diagnosis. They will likely go down without any treatment after you have been gluten free for a bit. Try not to worry too much...
  25. ravenwoodglass
    Welcome to the board. You are correct that you need to keep eating gluten until all Celiac related testing is finished. You should try for at least a couple slices of bread each day. Use the time until your appointment to read as much here as you can and ask any questions you need to ask. Be sure to read the Newbie thread at the top of the Coping section...
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