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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I would be worried also under your circumstances. I don't think your being paranoid at all. The fact that your villi are growing back is good and an indication of how well your doing on the diet. You have quite a list of meds that your on and hopefully all your doctors are well aware of them and the side effects and any combined reactions that can result...
  2. ravenwoodglass
    What meds have are you taking? With the issues you are having I would imagine they have you on quite a few. Have those meds been checked with the company that makes them to make sure they are gluten-free? Are any of them generic? Generic drugs can change binders at will. Also have you deglutened your house? Are you the only one on the diet? Are you...
  3. ravenwoodglass
    I was a chef for years and we were known as the one place in town where folks with allergies could go. Do call them and let them know. I would also make a point of thanking them for the efforts. In addition I would make sure that the waitress writes NO BREAD or FLOUR - GLUTEN FREE on the ticket. That clearly lets the kitchen know and might help her remember...
  4. ravenwoodglass
    Kari, You should store them in the freezer and keep them frozen until you are ready to use them. I like to have pizza maybe once a week and while they are pricey I figure 8 bucks comes out to $2 a crust so even with the toppings it's still cheaper than takeout pizza. I usually freeze the leftover pizza sauce in a plastic bag so that it is very thin and...
  5. ravenwoodglass
    Yes. I have also been on depakote for seizures. I would ask your doctor to test you for celiac. Do NOT go gluten free or gluten light until after testing. Make sure you get actual copies of the lab results as at times doctors will call a low positive a negative. If testing results are negative you should still give the diet a good try after the tests...
  6. ravenwoodglass
    Whether the doctor has reviewed them or not you have a legal right to copies of the labs. Don't call the office, go in person and request that they hand them to you. Then if they still refuse tell them you will be contacting your lawyer.
  7. ravenwoodglass
    I don't wear one but I carry them on my key ring. I did add celiac to mine.
  8. ravenwoodglass
    The Kinny pizzas are not really all that out of line with the calorie counts of regular pizza. Here is a link to the calorie counts of gluten pizzas. If you like their crusts there is no reason not to splurge occasionally if you did on gluten pizza before. Open Original Shared Link Also the old crusts were 123 calories per serving with each...
  9. ravenwoodglass
    The villi shortening and the blood work plus the other findings in the biopsy should be enough for your doctor to diagnose you. I don't know why they would want to do a pill cam with a positive biopsy, did the nurse say?
  10. ravenwoodglass
    Yes, the tocopherol that is labeled D tocopheral is if I remember correctly. I could be wrong and hopefully someone will correct me if I am. I have to avoid both soy and wheat oil and that is the one I use for vitamin E supplements.
  11. ravenwoodglass
    I just use the fish food in a plastic container and sprinkle it directly in the tank, wash my hands and wear rubber gloves when I change the tank.
  12. ravenwoodglass
    Thanks for posting this. Actually they shouldn't be able to get away with it but the lax rules for labeling in this country let them because it is not an ingredient but just used in processing. We really need to flood the FDA with the labeling issues in the hope that things may change one day.
  13. ravenwoodglass
  14. ravenwoodglass
    Has a dermatologist looked at that lesion? A derm can do a biopsy of the tissue next to the lesion and look for the antibodies that will be found with DH. DH is usually small blisters that can cluster and form a larger lesion but it is hard to tell from the photo if that is what that is.
  15. ravenwoodglass
    There are folks here who have PA but there are lots more who are B12 deficient because of the damage from the celiac. Your doctor can test you for PA and can also test your B12 levels. Many of us benefit from sublingual B12 taken daily even without having PA which is a failure of your body to produce something called the intrinsic factor.
  16. ravenwoodglass
    Sounds like you are doing everything you should be. Just one last caution, at least until your skin issues clear up it would be a good idea to avoid distilled gluten grains in alcohol and vinegars. Not all of us are sensitive to them and you can add them back in when your feeling good and watch for a reaction. It is not unusual for us to feel hungry at...
  17. ravenwoodglass
    The test ranges only go so high for some reason. I have heard of others who had results 'off the chart' so to speak. If you are going to have the endo make sure that you keep eating gluten until the endo is done. Also although it is doubtful you will have a negative on the biopsy do remember that there is a chance of a false negative. No matter what the...
  18. ravenwoodglass
    That does look safe. To be as sure as possible you could call the company. Their website should give a phone number. Since it doesn't list any 'natural flavors' with no identifier, (this is where barley malt could be hidden and when it is a flavoring it does not have to be disclosed), it should be okay.
  19. ravenwoodglass
    I was diagnosed through an elimination diet and then confirmed by my clueless GI doctor. If you can find an allergist to guide you through it and give you a starting point that is IMHO the best way to go. They can give you a starting point with foods that are most likely to be nonreactive for you.
  20. ravenwoodglass
    Not everyone with celiac shows up positive on blood testing. Up to 30% will have a false negative. If you are celiac then most likely with his response to the diet he is also. My doctors not telling me even what I was being tested for or the high rates of false negatives cost me many years of my life. I would go with the doctors advice and encourage him...
  21. ravenwoodglass
    An elimination diet was how I was finally diagnosed. If you find an allergist who can help you with one, not all will, it can be really helpful. It is not however just eliminating one food at a time. The way it was done was my allergist did skin prick testing and I had to fill out forms detailing what I ususally ate and foods I seldom ate. He then picked...
  22. ravenwoodglass
    You can take B12 but you should use the sublingual form. It will bypass the damaged gut and go directly into your bloodstream from the mucous membranes in your mouth. I personally just went with the daily sublinguals rather than the shots. US neuro's can be really clueless, if mine hadn't been some of the permanent damage I have now would never have happened...
  23. ravenwoodglass
    I don't know about the floss, I just use the unflavored but everything else you are using should be fine. I noticed you have only been gluten-free for a week, it does take the antibodies time to leave the skin if it is DH. Hopefully this will continue to improve for you.
  24. ravenwoodglass
    Make sure that you are checking your toiletries and shampoos and such for gluten. Look for wheat germ oil and if a label lists vitamin E call the company and make sure it is not from wheat. My 'acne' was actually DH, I used to ask my doctor why if it was acne it itched and burned and he never had an answer. Of course the rashes that covered my arms and...
  25. ravenwoodglass
    Since celiac can develop at any age unless the previous records stated that you had positive testing for celiac they would really be useless. Hopefully you won't have a hard time getting the blood work done, when it came time to test my husband and the doctor was reluctant I simply said "well humor me". He got the test and it was positive.
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