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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I was a chef for many years and was well trained in dealing with allergies and intolerances and attended health department training also but I still realize now that I was not dealing with CC issues as well as I needed to for a celiac. Our own families have a hard time at first understanding how serious just CC can be for us unless we were close to death...
  2. ravenwoodglass
    You can have all those tests come back negative and still be very, very ill from celiac. You can also have a false negative on the biopsies. No matter what the results of the biopsy you need to go gluten free when that test is done. Whether you want to have the biopsy done is up to you. Your doctor may give you an official diagnosis with positive blood work...
  3. ravenwoodglass
    If misrepresentation of our disease is fine with you great. People have very valid reasons for being upset that celiac and eating disorders were referred to in this way. Hopefully your next meal out won't be served by a waitperson who saw the show and doesn't take your needs seriously. I would also suggest that if it bothers you that others are bothered by...
  4. ravenwoodglass

    I just found out about Gluten intolerance but haven't been diagnosed with Celiac. I have started a gluten free lifestyle which lead me here.

    Your testimony has so touched my heart. I am so so sorry for your lose and also for all that you have been through with your misdianoses. I will remember you and prayer and am already getting people educated about the symptoms of Celiac an...

  5. ravenwoodglass
    Sorry you are still having problems. Since you had both postive blood tests and postive biopsy you do need to be gluten free. It can take some time to heal and it is not unusual to have ups and downs. What sort of things are you eating? Many of us need to give up dairy for a bit until we are healed. It also isn't uncommon for us to have CC issues that we...
  6. ravenwoodglass
    No. For one thing I wouldn't trust it to really stop the autoimmune process without messing with the whole immune system. I wouldn't want to trade off having to be gluten free with picking up every virus or bacterial infection that I come into contact with. Being gluten free isn't that bad in the long run.
  7. ravenwoodglass
    I just wanted to add congrats on the upcoming wedding. I do hope if you do choose to risk it with the cake that you don't have too severe of a reaction. If you do it might also be a good idea to make sure you have a pain reliever, some liquid name brand Pepto Bismal and some immodium with you on your honeymoon, just to be on the safe side. Hopefully you won...
  8. ravenwoodglass
    The half of you who is saying it is too good to be true is the half that is right. You are very early into diagnosis and it is not uncommon for people to 'grasp at straws' at first. Unfortunately there is not treatment or cure for celiac other than the diet followed strictly. Even stuff that might ease the GI discomfort isn't going to stop the autoimmune...
  9. ravenwoodglass
    I agree with Richard. The child may be sensitive to something in the formula and the Mom should talk about it with the babies ped and see if a different formula should be tried. As for the other person, just because you don't show up in blood tests does not mean that other celiac family members won't. I don't show positive in the older blood tests but both...
  10. ravenwoodglass
    That's good news and the issues should resolve once you have had some time to heal. Glad the doctor set your mind at ease. Maybe hard to believe but someday you may feel that the celiac diagnosis was actually the best news you had ever heard. I hope you heal quickly and are feeling better soon.
  11. ravenwoodglass
    Soy isn't a grain. It's a bean and protein source. There are some of us who are soy intolerant without any doubt. I am one and my reactions to soy are very different from my reactions to gluten. With soy for me there is no DH flare and it binds me for days and flares my arthritis whereas with gluten CC I will have the arthritis flare, D and a GI bleed, vision...
  12. ravenwoodglass
    Oats and rice need very different growing conditions so I don't think they would be used as a cover crop. Lundberg does have some mixes that have barley so I think if they are CC'd it is barley CC. I rinse any rice I use very well before cooking and have never had an issue with their products.
  13. ravenwoodglass
    I wish you were here in front of me so I could give you a hug. I'm sorry your DH is being so difficult. He should be trying to help you. Get a plastic baggie and put it over that remote. That will make it easy to clean when they get their contaminated hands all over it. This disease is hard enough to deal with by itself but when we don't have our loved ones...
  14. ravenwoodglass
    If you haven't been tested yet you really shouldn't be trying the diet until all your testing is finished or you risk a false negative and false negatives can be common even on a full gluten diet. If you are only two days into the gluten free lifestyle then yes you could be going through withdrawl.
  15. ravenwoodglass
    Yea I've been there. A childhood like that really stays with you and can impact you for the rest of your life. In addition to the books you might want to try some counseling. It helped me a great deal but it took a while to find the right counselor. Sorry you had to go through all you went through but we can use those experiences to make a better and stronger...
  16. ravenwoodglass
    Gluten just has to come into contact with a mucous membrane to cause a reaction. Any thing on your skin or hair has the possibility of being transfered by rubbing your eyes, nose or eating something with a lotion residue on your hands. While gluten is not thought to pass through intact skin if you have active DH lesions your skin is not intact. I avoid...
  17. ravenwoodglass
    I know how you feel, as many of us do. I was so sick for so long that I had really lost all hope and the only thing that kept me alive was my children. As was mentioned you don't want to go gluten free yet if you are going to have any other celiac related testing done. Please be aware that even on a full gluten diet some of us will have false negative test...
  18. ravenwoodglass
    If your blood tests were positive you are celiac. It is quite possible that with a month gluten free you are going to get a false negative on the biopsy. It would be a good idea to go back on gluten but just a week may not be enough. It does take time for us to heal and for issues with skin and other organs to resolve so after your endo is done go back on...
  19. ravenwoodglass
    It's great you are feeling so much better. Your aunt deserves a big hug and a nice dinner out at a restaurant that has gluten free food when you get home. My personal favorites are PF Changs and Outback. Stay safe and let us know when you get back to the states.
  20. ravenwoodglass
    You could be celiac but if you have been gluten free or gluten light that will cause a false negative. Seeing a remission of symptoms is fairly diagnostic in itself but it you want a doctors official diagnosis then you will need to go back to eating gluten at least for 3 months or so for testing. If adding gluten back in causes the symptoms to reoccur then...
  21. ravenwoodglass
    In addition to Whole Foods some Wegmans carry some really good and lovely premade gluten free cakes. They also make eating gluten free easy as they label all their gluten-free stuff with a circle G.
  22. ravenwoodglass
    Quite true and it can take some time to figure out what we tolerate and what we don't. It only took me 3 years to figure out the reason I thought I was being CC'd by stuff from dedicated gluten free facilities was because I was intolerant to soy. I miss oats almost as much as I missed gluten at first. I would give almost anything to have an oatmeal raisen...
  23. ravenwoodglass
    I really don't think fructose is an issue for most of us. What can be an issue is increasing fiber intake suddenly. Casien or lactose in dairy and soy are the most common intolerances. Plain rice noodles with just oil isn't going to give the body the nutrition it needs to heal. Going with whole unprocessed foods is the safest.
  24. ravenwoodglass
    The only treatment for celiac is a gluten free diet. While that young lady may have felt fine after eating the sandwich you have to keep in mind that for one thing there is silent celiac and for another it can take up to a week for the reaction to hit. The diet isn't that bad and it will prevent lots of stuff from happening down the road. Not the least of...
  25. ravenwoodglass
    Celiac is an autoimmune disease that can impact the entire body. Mind power will certainly not work against celiac any more than it would work against MS, cancer or any other disease.
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