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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    With your educational background and knowledge I don't know how much more education you would need. I do not think you'll find anything celiac specific but perhaps you could add a few more nutrition classes so you have an offical degree in nutrition, but if you have a naturopath and others who trust and refer folks to you already I wonder if you even need...
  2. ravenwoodglass
    Things that make you go hmmmmm. I haven't read this because.... I canceled my subscription because the mag is a cover to cover pharma ad. When I canceled I got into a long discussion on celiac with the person on the line and my feelings that we have a hard time being diagnosed because we can not be cured with a pill. So many ads for script and OTC products...
  3. ravenwoodglass
    You should get him on the diet. You could scope first but that may give you a false negaive especially if his GI tract is not yet being effected. In some more advanced countries that bright spot would have gotten you a clear celiac diagnosis but here in the US you have to be almost dead before they will give it to you. If you google neurological celiac...
  4. ravenwoodglass
    I have. After 5 years my reactions are now much less severe. In the beginning even a small amount of Cc would cause lots of blister and a GI bleed. Now I still react, I get severe cramps and D along with all the bloating and stuff but I don't bleed and my skin reaction is much less severe. My joint and muscle pain are also now transient when gltuened...
  5. ravenwoodglass
    Of all the mainstream companies Frito Lay is the one I postively hate the most. They have made us so sick so many times and the reps will lie their butts off to sell a product. I do so wish something could be done to make companies like this more responsible. Sometimes I wish I could get a large group of us together, have a feast on their products in the...
  6. ravenwoodglass
    I wouldn't touch Tostitos with someone elses hand, for anyone that eats them all the time sorry if that offends but for me most of this companies products are like playing roulette with my body. Sometimes they are fine other times they are not and it is just not worth the risk. They may have 'gluten free' ingredients but CC issues make these far from safe...
  7. ravenwoodglass
    Although this is not the 'usual' presentation for DH, DH can be know to not follow the rules. When I was a child I had the usual presentation for DH, misdiagnosed as 12 months out of the year poison ivy for years. I have also had DH present only on the neck, sides of my face and scalp. Sometimes it would itch horribly but not 24/7. Usually after I tore...
  8. ravenwoodglass
    What you are doing is dietary challenge, which is considered a valid form of diagnosis. You need to consider being gluten free not gluten light. Gluten light may make some problems a bit less severe now but is not stopping the antibody reaction. This may prevent you from seeing any real positive benefit until you stop eating it totally. For us gluten...
  9. ravenwoodglass
    I do hope your husband gets over his denial. With two genes she got one from you and one from her dad. In other words this disease runs on both sides of the family. Diabetes also goes hand in hand with celiac and diabetics are one of the groups that the NIH wants to have blanket tested regardless of symptoms. Celiac can be 'silent' or just periodically...
  10. ravenwoodglass
    I know that celiac related depression and anxiety issues abound but I am not so sure about their relation to serotonin levels. I suspect that it is a different mechanism that is causing it because of the seriously bad effects many of us have when given drugs like SSRI's and other psychotropics. For some of us the drugs effects on the serotonin levels can...
  11. ravenwoodglass
    I wish I could go backhand those two sisters for you. It sounds like they have made everything as hard as they could from the very beginning. I am a firm believer that what goes around comes around and they will get theirs in the end. It doesn't sound like there is any way you can override their decisions, and they don't sound like the decisions your BIL...
  12. ravenwoodglass
    First off I know that being ill can really mess with our self image, you are far from disgusting even if a bit thin. It does sound like you are having some malabsorption issues and do make sure you are getting enough fluids. All of your symptoms could be a result of celiac. Are you in the US? The reason I am asking is because there are certain 'gluten...
  13. ravenwoodglass
    I just wish they would make that label a little darker and larger. I have never had issues with any that had the gluten-free label. I love the India Spice and Morning Thunder.
  14. ravenwoodglass
    I think that is a great idea, perhaps we will see one soon.
  15. ravenwoodglass
    I am so sorry to hear this, he fought for so long. You and your family will remain in my prayers. ((((((((((HUGS)))))))))
  16. ravenwoodglass
    How much time do you have? LOL I'll just refer you to my signature, that will be quickest. The one thing I don't have listed there is that they thought I had MS for a long time. It was actually ataxia and nerve damage so that was the way I listed it but many features like extreme fatigue and weakness after a bath and vision problems had them thinking...
  17. ravenwoodglass
    Please don't wait to put her on the diet, please please please. She is the only one I have seen that is also a DQ9, I also do not show up on conventional blood tests even when I was close to death. Also DQ9 may be an intolerance gene here but in other countries it is a celiac gene. Her life could be destroyed long before she shows positive on any tests...
  18. ravenwoodglass
    Was the dressing a gluten free specialty dressing or was it a mainstream dressing that is considered gluten free because 'celiacs don't react to distilled vinager'. You could be one of us who reacts to distilled grain no matter what the 'experts' say. There are not a lot of us out there but we do exist, both my DS and I react to distilled gluten grains...
  19. ravenwoodglass
    Yes. Lots of us have and lots of us have gotten off those type of meds after eliminating gluten. If you are on them and do wean off do it with your doctors supervision. Many of us also have bad reactions to that type of medication with them making symptoms worse instead of better. Many also are not gluten free so be sure to check, sometimes a gluten-free...
  20. ravenwoodglass
    And I thought I had a bad day gee........ I hope tommorrow is better and the horses stay put.
  21. ravenwoodglass

    ARCHIVED Liver Biopsy

    ravenwoodglass replied to texasgal56's topic in Doctors

    You need a new celiac knowledgeable GI. A negative biopsy is not conclusive, only a positive one is. False negatives on both bloodwork and biopsy are common. Your response to the gluten free diet is the best test of whether it is needed. Elevated liver enzymes are common in us and usually resolve after a time on a strict gluten free diet. You should...
  22. ravenwoodglass
    You may want to do a search here and look for 'neurological manifestations of celiac', there have been a lot of articles posted here and a lot are also on the web from sites like pubmed, NIH etc (in other words actual medical studies). Also see if you can get her to come to the site and read some posts and some signatures. My doctors didn't even look for...
  23. ravenwoodglass
    The was what I found on the MCV (the bold is mine): "Mean corpuscular volume (MCV) is the average volume of the individual red blood cells. MCV is calculated by dividing the hematocrit by the total RBCs. The average range is 81-101 femoliters. A low MCV indicates the cells are smaller than normal. This most commonly occurs because of an iron deficiency...
  24. ravenwoodglass
    If those pans are older and have scratches yes. You also need a different toaster and cutting boards, wooden spoons etc. As far as dishes and glasses and silver ware if you wash them really well that should be enough. I would not put nongluten items into a dishwasher that cleans gluten dishes though. If you can minimize or even eliminate gluten foods...
  25. ravenwoodglass
    A Happy Gluten Free Thanksgiving to everyone. I pray everyones loved ones make it there safe and sound and in time for the feast.
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