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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Good for you!!!!! If more of us stand up for ourselves against these insulting and unknowledgeable doctors perhaps some of them might learn to treat us as human beings and with a bit more kindness and respect.
  2. ravenwoodglass
    Grain that is added must be declared. This was written into regs because some companies way back when would add grain products to meat to 'stretch it' but that hasn't been allowed since I was a little kid. That was a looong time ago. But if there was for example barley malt, highly unlikely but possible, in the broth that would be considered a flavoring...
  3. ravenwoodglass
    In my experience it can take up to two weeks for the celiac panels to return. Call your doctors office and ask them for a time frame if the results are not in yet. Also some offices will not contact you if results are negative. I ask doctors to always send me a hard copy of my results no matter what they are.
  4. ravenwoodglass
    If you want to keep your credit rating good yes you do have to pay him. The advice to contact the insurance company was good and you may also want to forward a letter of complaint to whoever is the head of the practice he is in and perhaps the AMA. Also you should ask for complete copies of any lab work you had done by him and you should get copies of all...
  5. ravenwoodglass
    If your not taking a good for sure gluten free megavitamin you should be. I take a vitamin by Country Life and they are a reliable gluten-free company. Be sure to read the whole label on vitamins as some will say gluten free but contain wheat and barley grass and you don't want those. You also may still need supplementing with vitamin D. You should also be...
  6. ravenwoodglass
    I had pretty severe water retention and full body edema. In my case it was due to celiac impacting my kidney function. I instictively stayed away from salt, I had one package that I had for over 5 years that moved with me through 3 different states. LOL. So we know it wasn't due to that. Doctors couldn't really tell by looking at me because I am a very small...
  7. ravenwoodglass
    I don't see anything in the ingredients that would be a concern. Even though they don't test for gluten that doesn't mean it isn't safe. I would try this myself and since it doesn't have soy ( a major allergen for me) I'll have to check it out. Does it smell nice? "Water, Sodium Laureth Sulfate, Cocamide DEA, Linoleamide DEA, Lame Advertisement Alternifolia...
  8. ravenwoodglass
    The only thing I really miss is phyllo wrapped around some apples, some baklava or spanikopita. Oh and these wonder meat and cinnamon pies I used to make with pita bread.
  9. ravenwoodglass
    I would suggest that you urge your father to get tested for celiac.
  10. ravenwoodglass
    I think it is because the accidental exposure causes a sudden spike in the antibodies. It sounds like his body is trying to compensate for the regular gluten exposure by trying to draw as much as it can from his food. Hence the constipation rather than the D that you were seeing with only occasional exposure.
  11. ravenwoodglass
    If your mother was celiac with your symptoms chances are real good you are also. There is a high rate of false negatives in blood tests as well as biopsy. If your not planning on having the biopsy done then keep on the diet as it does seem to be helping. The area in your intestines that helps to make the enzyme that digests milk is the same area that is damaged...
  12. ravenwoodglass
    For bread I really like Grainless Baker and Kinnickinnick is okay if they are out of GB. As far as chicken goes I get fresh, unprocessed chicken with no broth added to it. I stay away from the frozen bulk packages of chicken and just buy fresh in bulk when chicken is on sale and freeze it myself in one meal quantities. I also go with organic when I can...
  13. ravenwoodglass
    Those itchy bumbs do sound like DH. Do make sure the doctor is familiar with DH and know to biopsy the area next to the lesions not the lesions themselves. Tell the doctor that you are being evaluated for celiac so he doesn't automatically give you the atopic dermatitis diagnosis without even biopsying. Atopic dermatitis is the skin equivalent of IBS, IMHO...
  14. ravenwoodglass
    Myself also. As a child I always had what my Mom called 'rabbit poops' small dry and as one doctor put it 'the worst hemmies he had ever seen in a child'. I was also covered in blisters which they said was 'poison ivy' in my blood stream. The emotional issues you are seeing can also be part of the celiac picture. I hope you get some answers soon as the...
  15. ravenwoodglass
    Hopefully clearing the SIBO will help you. My fears with the genetic test is that they can't always tell you if there is or isn't a possibility of your having or developing celiac disease. I have good reason for this fear. My DD was both biopsy and blood positive for celiac. After she had been gluten free for a few years she had genetic testing done. She...
  16. ravenwoodglass
    I agree. The process is complicated and for myself even though my income is very low it isn't worth the trouble for a loaf of bread a week and a package of pizza crusts or a cake mix once a month or so. In addition since I almost never need to see a doctor anymore I don't want to do all that paperwork when I likely won't be able to deduct it anyway. I had...
  17. ravenwoodglass
    There is up to a 30% chance of a false negative with blood testing. Doctors relying on the blood tests alone cost me many, many years and a lot of pain. If your going to have an endo keep on a full gluten diet until that is done. If you have already had one or don't plan on having one give the diet a good strict try. Your body will give you the answer.
  18. ravenwoodglass
    Please don't rely on the genetic tests as a for sure that you do or don't have celiac. They are discovering more and more genes associated with celiac every day. It used to be thought only the two DQ2 or 8 were associated, then there were nine of them and recent research is showing as much as 27. While genetic testing can be part of the diagnostic process...
  19. ravenwoodglass
    Thanks for correcting the link. On the page is also an 'action' link to contact the FDA about the lag in the time it is taking to get gluten free labeling requirements taken care of. I sent a message from that link and others may want to also.
  20. ravenwoodglass
    Would a long distance hug help a bit? ((((((((((((((Hugs))))))))))))))) I do think the 'she is feeling guilty about possibly glutening me with the banana bread' is right on target. Perhaps stressing that cooking for us is really hard and how much you appretiate her trying might make her feel better. Maybe you could go together and get some inexpensive...
  21. ravenwoodglass
    With gluten ataxia the antibodies are attacking the brain. It leads to problems with balance. It can make walking difficult and make it hard to know where your body is in the space around you. Kind of hard to explain. I used to have vertigo upon rising from bed or standing up but I think some of that was due to the very low blood pressure that I had pregluten...
  22. ravenwoodglass
    This was one of the worst problems I had before diagnosis. I was very fearful that I would never get better. I had gotten to the point where I couldn't even read and just trying to get the words out to tell someone to get something for me was impossible. I was a chef and had to tell people what to pull for orders. By the time I could find the words I could...
  23. ravenwoodglass
    It is becoming more well known that celiac disease can be responsible for depression and anxiety and that once we have healed those symptoms can go away. If the med is making you worse then you should talk to your doctor as to whether you can just stop it or whether you have to taper off. You have only been on it a month so you shouldn't have any issues with...
  24. ravenwoodglass
    Dry roasted nuts tend to have flavorings. Some are safe and some are not. Call the company and ask about whether they are gluten-free or not. I usually ask if wheat, rye barley or oats are used in the product rather than asking if the item is gluten free.
  25. ravenwoodglass
    I agree that the 3 to 4 month before your next appointment is to see how you do on the diet. It sounds like you have a good doctor who is taking into account how you respond to the diet. The fact that she did not want you to do a challenge because she did not want to make you even sicker is IMHO a good thing. I have a feeling if you respond well to the diet...
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