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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes I did have the thickening. I also think it is due to the inflammation from the celiac, as I was told the thickening of my heart walls was due to inflammation.
  2. ravenwoodglass
    My questions: 1. The more I read the more I think that I may be a celiac and not just "gluten intolerant" and would like to be able to affirmatively tell that to people since I will have to do so the rest of my life. Has anyone had trouble getting health insurance if they had to switch or had a higher premium for life insurance? Yes some folks have...
  3. ravenwoodglass
    Refractory is when the damage from celiac doesn't heal on the diet. If your antibodies are still high then you are getting gluten from somewhere so do be sure to get copies of the bloodwork. Gluten can be sneaky and to stop the antibodies some of us need to be really strict avoiding it in toiletries as well as stuff like having our gluten eating significant...
  4. ravenwoodglass
    Yes it is still quite possible for you to have celiac. If you want more testing don't go gluten free yet and have the blood tests rerun. Just because they were negative a year ago doesn't mean they will be now. Keep in mind though that the tests could still be a false negative so try the diet strictly after all testing you choose to do is done.
  5. ravenwoodglass
    Glad you finally know for sure and that you didn't have a false negative. Now you can start the business of healing. I hope you are feeling better soon.
  6. ravenwoodglass
    Even though the tests were negative do give the diet a good strict try for at least a couple of months. False negatives are not uncommon and delayed my diagnosis for many years. Celiac does usually have a trigger and emotional stress can be that trigger. Feeling the way you do isn't normal even for a 50 year old. I was diagnosed finally in my late 40's and...
  7. ravenwoodglass
    Yea, the doctors never said what it was from but my doctor didn't seem concerned. If your doctor enlightens you as to what it is from let us know as I have always been curious what caused it. I suspect it was from years of inflammation but that is just a guess as they found the same thing with my heart scan.
  8. ravenwoodglass
    Explain to the doctor what your issues have been and tell him that you did a short trial of the diet and that it relieved your symptoms. Tell him that you are aware that to be tested for celiac you need to still be on gluten and tell him how awful you felt when you added it back in. Then tell him you want to be tested for celiac. It depends on the doctor...
  9. ravenwoodglass
    Rather than detox it is likely to be withdrawl. Celiac can have neurological impacts and we can be addicted to it and go through some really moody days when we first go gluten free. Being very hungrey is also normal. The body on gluten is being deprived of the nutrients it needs and when we go gluten free the constant hunger is the bodies way of trying to...
  10. ravenwoodglass
    You actually, in my opinion, have a pretty good doctor there. He is doing what he should be doing. Are you still having any symptoms like D, fatigue, brain fog etc? Are you being careful to avoid any chance of cross contamination and have you checked to make sure your scripts are gluten free? It is appropriate for him to send you back to the GI and redoing...
  11. ravenwoodglass
    The time to get the endo is before you do the diet. If you are gluten free the endo will come back negative. Since you have a mother who is celiac the chances that you are also dealing with it are IMHO pretty high. False negatives with testing are not uncommon at all.
  12. ravenwoodglass
    As painful as it might be you really need to keep eating gluten until the endo is done. As was stated there are false negatives with testing. Do listen to your body and go gluten free as soon as the testing is finished you don't need to wait on the results. Your body is really giving you the answer and do keep in mind that once you are 'officially diagnosed...
  13. ravenwoodglass
    Try Now or Country Life brand or if you live near a Wegmans they also have them. Make sure you are getting enough vit D also.
  14. ravenwoodglass
    Some of us can have skin issues for a very long time before other celiac symptoms show up. Once you have been gluten free for a while if the KP disappears you will know it is gluten related.
  15. ravenwoodglass
    Yea it is pretty normal to have the kind of reactions you had after we stop eating gluten and then get some. You did a kind of gluten challenge and since you reacted you know for sure now that you are doing the right thing being gluten free. Some of us have issues with other ingredients that can be included in gluten free products. For example for me soy...
  16. ravenwoodglass
    Are you having balance issues? Is that why she said it might be inner ear? Balance issues with celiac is due to something called gluten ataxia. People with ataxia need to be very strict generally to have it resolve. Ataxia usually is associated with brain lesions called UBOs that can be seen as white spots on a brain MRI.
  17. ravenwoodglass
    Not to be overly dramatic but your life and quality of life depend on your being completely gluten free. It makes no difference if you use the label intolerant or celiac the need to be strict with the diet is the same. Many, including some doctors are under the impression that intolerance is less serious than celiac. It is not. Some doctors would call me...
  18. ravenwoodglass
    While we are never happy to find out we have something like celiac it is good to have a diagnosis. Now you and your baby can start to heal. I hope your feeling better soon.
  19. ravenwoodglass
    Yea but it is still fun to read and wonder. The amazing thing about the brain is that if someone thinks something will work sometimes it will. It doesn't hurt anyone. Well unless, for example, they go out and have 12 beers and think their amethyst will keep them sober.
  20. ravenwoodglass
    It sounds like you are getting good results from being gluten free. However if you are going to do any further celiac testing you need to get back on gluten right away. Do keep in mind that endoscopies can have fairly high rates of false negatives so when you are done with celiac testing do go back to the diet. It takes some time to heal so we do need to...
  21. ravenwoodglass
    Welcome to the board and I agree with Mushroom. Do be strict with the diet and read as much as you can here to keep yourself safe. Ask any questions you need to.
  22. ravenwoodglass
    Since celiac can impact nutrient absorption our bodies can signal us that we are constantly hungry because it wants more nutrients. It sounds like you have seen a great deal of improvement on the diet. I would stick with the diet.
  23. ravenwoodglass
    That's okay. Also in the US only wheat needs to be declared in foods plus the FDA is still trying to decide how to define gluten free. Companies are becoming more aware though and many are voluntarily declaring gluten clearly in ingredient lists now, as far as food is concerned.
  24. ravenwoodglass
    After we have been gluten-free for long enough for the antibodies to leave the skin we can and should then add back iodine. If you have been without a DH outbreak for awhile you could try the med and hopefully you won't have an issue.
  25. ravenwoodglass
    They also had been gluten-free for 5 years and only ate the stuff for 60 days. In fully healed celiacs it can take some time for reactions to appear, which is why it used to be thought that celiac could be outgrown. It used to be thought that gluten was safe as long as it was under 200ppm, that has now been lowered to 20ppm. What is also a bit confusing is...
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