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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    That makes a great deal of sense. I do wish this country would adopt the mucosal testing methods where a gluten suppository is used either rectally or orally and then the antibodies are looked for in the mucosal cells after a couple of hours. From my understanding we don't use the test here because it is a very sensitive test and picks up antibodies in folks...
  2. ravenwoodglass
    In my family we are all right handed and all are celiac. But.... I grew up in the generation where it was bad to be left handed. The nuns in school would slap you with a ruler if you used your left hand so if left alone I would likely be left handed. When I had surgery on my right hand and had to write with my left the writing although slow was actually more...
  3. ravenwoodglass
    Just a quick note, do make sure that the one you take doesn't contain barley grass or wheat grass. Those are considered gluten free but many of us react to them. Especially if your new to the diet it is best to avoid those in juices or supplements.
  4. ravenwoodglass
    It could be possible that something else in the med is causing problems. It isn't always gluten. Can you stop the med for a bit and see if the symptoms resolve? Of course if you are taking it for birth control do use another method to prevent any 'accidents'.
  5. ravenwoodglass
    Please keep in mind that even with full blown autoimmune attack and a full gluten diet up to at least 20% of us will show a false negative with blood testing.
  6. ravenwoodglass
    That was what my allergist had me do. When I asked him if I should continue challenging his response was 'Oh dear, heavens no!!!!'. However after he referred me back to the GI the GI wanted a full long term challenge to 'prove' through the biopsy that gluten was poison to me. I refused but consented to a one week challenge which then produced a severe GI...
  7. ravenwoodglass
    There is a big difference between the amount of antibodies that are produced and their action on our systems and the amount of antibodies need to show up in blood work. Some of us even under full long standing autoimmune attack will have false negative blood tests. Hopefully someone will be able to explain it a bit more fully but even the experts don't really...
  8. ravenwoodglass
    I've only had a problem with one shredded cheese and that was a long time ago and since I was early in the diet it may not even have been the cheese. I stick with Kraft or the name brand at either Wegmans or Food Club at another local store. Most companies I have found are listing potato starch as a noncaking agent. Some will list cellulose and noone has...
  9. ravenwoodglass
    Check out this tread on the products page.
  10. ravenwoodglass
    No there needs to be active lesions. That said some derms will allow you to call them when the rash is active if they know from your first appointment that is what you are looking for. The DH rash also leaves distinctive purplish scars that take a long time to fade. Seeing those from past rashes will encourage them to allow you to call when the rash is active...
  11. ravenwoodglass
    They need to biopsy the area next to the rash not the rash itself. The skin next to the lesions is where they will find the antibodies. Make sure the derm biopsies the right places. A DH diagnosis is a diagnosis of celiac. Sometimes the rash is so itchy that you never really see the blisters as they are scratched away as they are forming. Seeing a derm...
  12. ravenwoodglass
    Yea I have to agree with this although I am reluctant to say they are doing it for just money reasons. I think it is more ignorance. But that said they did make literally thousands off me and my insurance company, about 17 grand in copays for testing and specialist visits from my family the year before diagnosis. I have now been gluten free for 8 years and...
  13. ravenwoodglass
    My gluten by accident symptoms got worse also. I am eight years in and a good glutening now leads to a 3 days mild GI bleed. Something that didn't happen at all before I was diagnosed.
  14. ravenwoodglass
    Exactly. DH is another example of the autoimmune antibody reaction that doesn't always affect the gut. Both are autoimmune disease. That is why I consider gluten intolerance and celiac to be the same disease.
  15. ravenwoodglass
    You can't think yourself out of gluten symptoms. If you are reacting positively to the diet then you have done the right thing. If you feel the need to challenge go with something like cream of wheat or triscuts. You don't want any confusion which can happen when folks challenge with stuff like pizza etc. I would suggest eating a bowl of cream of wheat or...
  16. ravenwoodglass
    Please do stay positive. It may take a while but your brain function should return to at least almost normal levels. Before diagnosis my brain was fudge, if you held up a fork I couldn't tell you what it was. My memory was so bad I couldn't even read anymore because I would forget a sentence as soon as I read it. It took a while but my brain actually functions...
  17. ravenwoodglass
    No your not, and you could also be glutened by getting it in your nose. You nose drains into your esophagus for one thing for another gluten can cross into your system through the mucous membranes.
  18. ravenwoodglass
    It really varies from person to person. It can take anywhere from a couple days to up to 3 weeks for those who had serious autoimmune issues before diagnosis. Hopefully you will be in the 'couple of days' group.
  19. ravenwoodglass
    That is also my understanding. Avoiding the foods you are sensitive to should bring the numbers down.
  20. ravenwoodglass
    Oh yea gluten can definately cause mood changes. You not an oddball at all it happens to a lot of us, me included. For me it is even a greater incentive to stay strict with the diet than the GI issues.
  21. ravenwoodglass
    I think you are wise to go and get checked for parasites, especially since you have recently been overseas. It can take some time for us to heal fully after we have done a 'challenge'. Just keep eating clean and get that stool culture done and hopefully you will be feeling better soon.
  22. ravenwoodglass
    Thank you for posting. I am so happy for you. I hope someday the posts relating experiences like yours will outnumber the ones of clueless people trying to feed us poison. We can hope anyway.
  23. ravenwoodglass
    IMHO cleanses can be dangerous for those of us with compromised systems. If a person suspects parasites their MD can order testing for them and treat.
  24. ravenwoodglass
    You will go in and they will insert an IV line. Then you wait your turn. If you are very nervous some doctors will give you an oral sedative to take at home before you go but there really is nothing to be nervous about. You will go into the endo room and they will put you to sleep. You will wake up and go home. That's it. Make sure you bring someone with...
  25. ravenwoodglass
    Many of the McCormicks seasoning mixes have gluten. I would read that back panel next time you are at the store. The ones that don't have wheat could also be CC'd in the plant. Airborne wheat in those places would be IMHO a danger no matter how well the lines are cleaned. I use their single ingredient spices with no issues but avoid the mixes. You can always...
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