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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I didn't have vomiting but my daughter did. Fatigue and painful joints are not uncommon. IMHO her doctor should be doing more than just 'talking to her' about it. She needs to be tested and then when testing is finished she should give the diet a strict try no matter what the results.
  2. ravenwoodglass
    I agree with the others your bloodwork is postive. I also agree with the poster who reccommended just getting the endo if you feel you need more confirmation and skipping the colonoscopy. The prep for that test is not pleasent and if the diet does away with your issues you have your answer. If after being on the diet for 3 to 6 months you are still having...
  3. ravenwoodglass
    That was a pretty good article with one exception. I really disagree with this: "Is everyone better off avoiding gluten? No. A gluten-free diet is not a healthy diet. It's deficient in fiber, vitamins and minerals - and is more expensive. There is no evidence that people without gluten sensitivity will benefit from abstaining from gluten." While...
  4. ravenwoodglass
    The best 'proof' of all is in my opinion in this quote from your post "I felt fantastic! My skin also greatly improved, and since going back on gluten as gotten much worse. But, going gluten free is hard (especially when dining out), and I am someone that needs proof. " You could go to Enterolab for testing or continue to eat gluten for another month or...
  5. ravenwoodglass
    I second the search, if anyone knows of where we can also find the black form it would be really appretiated. I do so miss my licorice.
  6. ravenwoodglass
    If chicken has broth added it is not the chicken you need to worry about it is the broth and it is not unknown for broth to contain gluten ingredients. Flavorings in the broth can contain gluten ingredients. Actual grain needs to be disclosed but flavoring in broth does not.
  7. ravenwoodglass
    The GI doctor most times is not going to have any idea whether this is gluten free or not. I would ask the pharmacist to check or call the phone number that should be on the sheet that came with it.
  8. ravenwoodglass
    I don't believe myself that it would be a false positive, mainly because there are so many of us with thyroid issues. From my understanding false positives are really rare and it is possible to have both celiac and other autoimmune issues. Also many in the medical field are still woefully misinformed about celiacs who are overweight, there are many of us...
  9. ravenwoodglass
    You could still be celiac even with the negative blood tests. Thankfully you knew enough to give the diet a good shot. I am one of the 20% of celiacs who show negative on blood work but no doctor even told me to try the diet. I had lots of autoimmune impact and was a 'classic' case symptom wise but doctors would look at the blood test results and tell...
  10. ravenwoodglass
    Welcome. Your blood tests were postive for celiac or gluten intolerance. If you plan on going to have an endoscopy then make sure you keep eating gluten until that is done. You should go gluten free after all your testing is complete. It can take a little bit of time for new topic posts to come up on the board but be assured it will.
  11. ravenwoodglass
    I agree with this completely. I had celiac from around age 5 but I didn't develop other autoimmune issues until I was in my thirties. Then they hit hot and heavy. Thankfully many of my other autoimmune related problems have gone into 'remission' in the years since I was diagnosed. Everyone is different and celiac can present in many different ways...
  12. ravenwoodglass
    Safest way is to call them and ask.
  13. ravenwoodglass
    If that is the case I personally would tell her 'thanks but no thanks'.
  14. ravenwoodglass
    Having the testing or not is entirely an individual choice. I did not at any point say that it would be foolish not to have the testing done. Some people worry and/or have a family history or symptoms that might make them more likely to choose to have the testing done. Others may choose to never ever have a colonscopy or any other form of screening and...
  15. ravenwoodglass
    If they didn't do any biopsies with the endo you had you may want to consider having that redone at the same time. If you are celiac the colonscopy isn't going to help with the diagnosis.
  16. ravenwoodglass
    But they can find them. When they did my endo and colonscopy they found that my duodenum has precancerous changes, undoubtedly due to my many years of misdiagnosis, and the lower scope revealed polyps. We can't always feel the bad stuff that is going on and but it is a personal choice whether to have these tests done. I put them off until over 6 years...
  17. ravenwoodglass
    The choice is yours. If you are having continued issues then it wouldn't be a bad idea just to be on the safe side but don't use it as a diagnostic tool for the celiac at this point. If your over 50 you may want to consider having the routine colonoscopy done and the endo at the same time. Have they rerun any of your blood work yet? You have only been...
  18. ravenwoodglass
    Well I can definately identify with how you are feeling. My panic attacks were severe and eventually made me a person trapped in my own home and even at one point restricted where I could be in there. I lived like that for a long time. I finally decided to try and get some help a few months ago. I started seeing a counselor and was put on the generic...
  19. ravenwoodglass
    Do ask your doctor to test you for it. Do not go gluten free until they are done with all testing but do keep in mind that testing does have a higher than we would like rate of false negatives. After you are done with all the testing you choose to do then give the diet a good strict try. If a doctor derived diagnosis is not important to you then you can...
  20. ravenwoodglass
    Many of us suffer under the IBS diagnosis for years. What you need to do is call your doctor and ask if they will call in a complete celiac panel for you. Then get the blood drawn for it. It would be a good idea for them to also order tests for anemia, both iron and B12. With your IBS diagosis they should have done one already IMHO but doctors don't. ...
  21. ravenwoodglass
    I won't, never have and never will. I haven't even had a cold since I was diagnosed and see no need for it. My answer would likely be different before I was diagnosed since my immune system was so busy fighting gluten that I caught every bug there was then and was constantly sick with something. Now that gluten is not an issue my immune system seems to...
  22. ravenwoodglass
    The item you need to check on is the natural flavoring. If modified food starch is from wheat it should be listed as such but gluten can hide in the natural flavoring.
  23. ravenwoodglass
    The problem with the genetic tests are that usually they only test for the 2 genes you mentioned. However there have recently been 7 more genes that have been recognized as being associated with gluten issues. I, thankfully, didn't have gene testing done until 5 years after I was diagnosed. I did it because my blood and biopsy diagnosed DD had been retested...
  24. ravenwoodglass
    Yea you need to go back on a full gluten diet for about 3 months to get the best chance of a postive on testing. And even after that you still run the risk of a false negative. IMHO if you react strongly to gluten and are dreading this challenge because of how sick you will be you alreay have your answer. If you do decide to challenge for testing make...
  25. ravenwoodglass
    I would ask for the name of the product and the company that makes it and then call them. Unlike the last poster I and many others have issues with topical products. With so little known about our 'disease' and what we may react to I feel the 'jury is still out' on whether this could be an issue. We do know that we can be glutened by contact with mucous...
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