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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Don't dismiss celiac. I had the same experience as you, I showed negative on the panel, over and over again over the years. So celiac was dismissed. Toward the end I was allergy tested and out of 99 things tested for I only showed up as NOT being allergic to one thing..... beech trees. That would have led to a very restricted diet. My allergist saved...
  2. ravenwoodglass
    Please do try to encourage her to try the diet. I so wish doctors didn't let people think that those tests are the end all of the diagnosis line. I am someone who does not show positive in blood testing and the doctors never even told me anything about the diet. Oh how I wish they had. I lost of lot and so did my family during all those years of repeated...
  3. ravenwoodglass
    Hi, Glad to hear things are starting to improve. It can take a while and even us oldsters mess up sometimes, the way things are labeled it is hard not to unless everything goes from ground to mouth. I hope it only gets better from here.
  4. ravenwoodglass
    Hi and welcome. If I had relied on blood tests I would now be dead as up to 30% of us do show negative. Because I never showed positive in blood tests an endo was never even thought of. The blood test is the first test usually done to check for celiac. Unfortunately there is a high number of false negatives, although the newer Ttg test is a bit better...
  5. ravenwoodglass
    I am seeing this more and more often. So many of us assume glucose syrup is safe but it is another of those items where gluten can sneak in. I am glad they are finally starting to label it on packages because few believed me when I would mention it. Wheat is a fairly common grain used for glucose, at least now by law they have to label it when it is once...
  6. ravenwoodglass
    In order for the blood tests for celiac to be done, yes you would need to be actively eating a full gltuen diet, and they may still be a false negative. For the biopsy of your skin lesions you do not have to be actively eating gluten but you do need to have active lesions. Another route that you could consider if you are already gluten free is Enterolab...
  7. ravenwoodglass
    It sounds like you had some gluten sneak in. The area you describe as uncomfortable is also an area where the large intestine takes a sharp turn. Excess gas would cause the type of pain and the fluttering sensations you are experiencing. It would also cause the excess anxiety that you are experiencing. Take a good look at what you have eaten in the last...
  8. ravenwoodglass
    Any result in the positive level is positive. If you are going to chose to biopsy, and that is your choice, you do need to stay on a full gluten diet. If you are chosing not to biopsy then you can go gluten free. However if you are doing the biopsy and have been gltuen free and are challenging for a month or two and you become very ill please be sure to...
  9. ravenwoodglass
    I have never heard of an ultrasound diagnoseing celiac. I have heard of MRI's being used for those that have severe neurological impact. Celiac will cause lesions similar to MS lesions but not around the mylin sheath. In the US the lesions are called UBOs (unidenified bright objects), they show up as a very white spot on films, but here they are not recognized...
  10. ravenwoodglass
    Go back to your derma and ask for a biopsy. The biopsy need to be done to the tissue NEXT to an active lesion, this is where they will find the deposits. If they biopsy an active lesion it will be a false negative. Be aware that if the derma finds you do have DH what they will most likely do is give you a script for Dapsone. This will help to heal the...
  11. ravenwoodglass
    How dehydrated are you? Lift the skin on your hand by pinching it between your fingers. If it stays in the pinched position for a noticable amount of time please do not wait until next week to see a doctor. Call your doctor today, there are things he can give you to ease the vomiting. A week is a long time to still be vomiting, dehydration can be serious...
  12. ravenwoodglass
    Things sure do change the minute you turn your back. Lisa is correct, many do now use a synthetic product to grow the mold. I would make sure that the one I was using does by calling the company or checking their website first to make sure.
  13. ravenwoodglass
    Are you now actively glutening yourself for the biopsy? I sure do hope not. That statement may not be popular with some but with your positive reaction to the diet and the fact that so many nasty numbers were so far going back toward normal ranges I don't think there is any doubt about gluten being toxic to you. You body is not going to like you injesting...
  14. ravenwoodglass
    Hello and Welcome. Another 'hypochondriac' here. I don't have a lot to add other than a welcome and that you have found a great place for info. You are certainly not alone, there are many of us that have suffered needlessly for many years watching our bodies deteriate while they shove drugs at us, many toxic or even deadly. I am glad you have finally...
  15. ravenwoodglass
    Lisa if you check out the 'other intolerances' there is a lot on candida. I would not advise you to try and cut out any more in your diet without consulting a dietian or nutritionist. You are very restricted as it is and your nutritional levels need to be kept up. Your present diet is very deficient if all you are eating is white carbs and the two veggies...
  16. ravenwoodglass
    If Brittany is celiac all the interventions and hospitalizations will do for her is push her closer to suicide. Or perhaps even cause it directly with the wealth of drugs they are undoubtedly giving her. Celiacs can have really strange and dangerous reactions to a lot of the psychotropics that they usually throw at us.
  17. ravenwoodglass
    Yep, it sure is. I brought in scads of research to my doctor on the neurotoxic effects of gluten, he was cluelss. I posted links to a lot of it over the years here. Our whole family has a stong, really strong, depressive effect from gluten. For me it was like a cloud I had been under for 40 years lifted. They have also done research projects in prisons...
  18. ravenwoodglass
    It's not safe. I believe, and someone I am sure will correct me if I am wrong, that the blue cheese is formulated or grown on gluten sources. I have never heard of a blue cheese that was safe.
  19. ravenwoodglass
    Are you still on the diet? Are you feeling better? Retesting is done sometimes to check whether their levels have gone down. Many doctors will retest at 6 months or a year to check.
  20. ravenwoodglass
    Why not try eliminating gluten for a month or so and see what happens?
  21. ravenwoodglass
    This is a really good site. The first time I visited it I was disappointed that when the products came up they did not identify for example what the tocepheral (sp) was derived from. A big concern for me since I am allergic to soy as well as gluten intolernant. I discovered that if I put just the word soy or the word wheat into the search that the results...
  22. ravenwoodglass
    I have thought about this a lot since she had her kids and has gotten so bad. Her symptoms and when they started to get so bad scream celiac. I was wondering the other day if I contacted maybe the doctor on CNN by email if he could or would contact her. I don't know though, I figured they would just think I was some nutcase.
  23. ravenwoodglass
    A slightly differnt take from a magazine but I wonder how one would go about getting backing for public service announcements on Time Warner or any major TV network? Does anyone know of any 'outed' celiacs in the media or acting business that might be contacted for advice? Would there be a way to raise money to create a commercial spot? Anyone here involved...
  24. ravenwoodglass
    I was thinking primary biliary cirrhosis (sp). Could be wrong though.
  25. ravenwoodglass
    I just want to make sure about this, does the FOS box state that it is gluten free? It can be make from barley or wheat and there are no labeling requirements on drugs, (OTC or script) or supplements that would make them say so. I was wondering what it was and this is what I found when I googled: FOS is extracted from fruits and vegetables like...
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