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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Talk to your doctor about getting off your meds. There are some that you can just stop taking but there are others that you need to wean off of. The doc will give you the best advice on stopping them.
  2. ravenwoodglass
    Have you checked all your toiletries and cosmetics for gluten? You need to figure out where the gluten is sneaking in. The only real 'cure' for DH is being really strict with the diet. Whenever you get any gluten it will reactivate the antibodies in the skin and it takes a long time for those antibodies to go away. I have been gluten-free now for 8 years...
  3. ravenwoodglass
    First off your mom didn't outgrow celiac. It used to be thought that children would because many diagnosed in childhood will seem to be able to eat gluten again in adulthood without issues. We now know that doesn't happen but the disease can change presentation. Your sister does sound like she is one of us. Have they tested her for celiac yet? Has she let...
  4. ravenwoodglass
  5. ravenwoodglass
    The coconut oil is a great idea. I used to put a small bit on my hair at night and brush it through and then shampoo in the morning. I have also warmed some in the microwave, warm not hot, and then applied and covered with a warm towel while I put a mask on my face and did other 'spa' type stuff. Makes for a nice pampering. I had a great deal of hair loss...
  6. ravenwoodglass
    It does take time to heal and for many of us once we get rid of the obvious gluten our bodies will be so happy about it that it will react to even the tiniest amount. Do look over everything you come into contact with including your toiletries and cosmetics. Also make sure you have deglutened your kitchen and that you have gotten your own dedicated toaster...
  7. ravenwoodglass
    Paradise Valley are fantastic. They are just potatoes, that's it. They come in a multi packet box and being a home of 1 I usually have leftovers. They reheat well and make a great topping for shepards pie.
  8. ravenwoodglass
    Hello and welcome. The reason why gluten is having the 'mental' effects that it is having with you when you get glutened is because for you the antibodies are "attacking" the brain. Your not alone in this effect. For me it helps that I know it is gluten induced and that the emotional stuff will pass. As long as I don't keep reglutening myself. Gluten can...
  9. ravenwoodglass
    The gluten wasn't really hidden it was written on the label just not in a form that was easily recognized. Some gluten grain derived 'ingredients' have been so heavily processed that the gluten is considered to have been 'processed out' of them. Unfortunately some of us we will still react. This can be seen in other countries also like the Codex wheat starch...
  10. ravenwoodglass
    I finally found a good dentist who is knowledgeable about gluten and was willing to check all products. It was a long process with many initial 'sit down and talks' but no work appointments talking about the issue before I found one who not only would check all the products he would use but also had a personality that I liked. We can get glutened with some...
  11. ravenwoodglass
    It took about 6 months and my being super strict for my nerve issues to start to resolve. By then I had lost the 'tingles' and my movement was better. I had the most healing in the first 2 years but it was a gradual process after 6 months. I did have a great deal of damage though as it began when I was in grade school and developed ataxia and lost reflexes...
  12. ravenwoodglass
    That product contains malt diatase. Here is what that is: "Malt diastase is a light tan powder extracted from barley malts, soluble in ethanol. Malt diastase is active in the temperature range 20-50°C. Optimum pH range is 4-8. The product is standardized to 4000° Lintner. Malt diastase can be manufacturer as a custom blend at any strength below 40000°...
  13. ravenwoodglass
    You could of course have gotten CC'd at the restaurant or at home. The first thing I would do is drop the cereal and see if things improve. As for differing symptoms with different intolerances I can only speak for myself and everyone is different. My gluten symptoms have a definate pattern starting with exhaustion and a short lived deep depression followed...
  14. ravenwoodglass
    Drat!! I was so hopeful. Oh well. The very nature of phyllo makes me think it unlikely that a gluten-free variety will appear soon. Even the old world ladies in my area buy it not make it from scratch as even making the wheat variety is incredibly time consuming.
  15. ravenwoodglass
    People may not need incorrect advise but as there are many of us who do react to topicals whether it be through accidental injestion or rinse water accidently getting into our mouths it is a good idea to let people know that it is possible for some of us to react. I am really glad for you and others that don't react but there are plenty of us who do. If someone...
  16. ravenwoodglass
    Good idea. I often mix plain or lightly flavored unsweetened seltzer water with a bit of freah orange juice or another bottled one. Tasty and no or low sugar.
  17. ravenwoodglass
    Really!!!!! Could you look for the brand name next time you see it and let us know. I know my Wal-mart doesn't have anything like that gluten-free but perhaps I could talk the folks at Wegmans into ordering some. Gosh I miss Baklava and puff pastry fruit pies.
  18. ravenwoodglass
    Could you post the names of the tests and their results and reference ranges? We could tell you more that way. Not all tests have to be positive for someone to have celiac. In fact the rate of false negative is pretty high. The last I checked the false negative rate for celiacs on blood tests was 20% and false negatives on biopsy are all too common also....
  19. ravenwoodglass
    I would continue the diet as the doctor reccommended, but for life. For one thing the villi blunting trumps the blood test as far as diagnosis goes. There are however fairly high rates of false negatives for both so I would go with the biopsy results. Also if you had already gone gluten free that causes a false negative on blood work anyway. If your not consumeing...
  20. ravenwoodglass
    Cream of Buckwheat cereal with a bit of cinnamon and some sugar seem to sit well and are comforting for me. Pepto Bismal liquid helps a lot if I have stomach pain but I don't medicate the D at all.
  21. ravenwoodglass
    Some sublingual B12 will may help a bit and a good gluten free higher dose multi. It could be part of your withdrawl and if it is it should pass soon. 6 hrs is not a lot of sleep. Your body is healing and if you can possibly get a few more that might help also. Make sure you are getting enough protein, nut butter and a piece of fruit and some gluten-free...
  22. ravenwoodglass
    I don't have a lot to add to Nora's reply. It sounds like at least the 4 year old is doing well on the diet. Why are you going to make him do a challenge? It seems his body has given you the answer. Are any of the other kids gluten-free? Do be aware that they don't have to go on a challenge for Enterolab testing. As stated they do not diagnose but they can...
  23. ravenwoodglass
    You guys are doing a great job of keeping her gluten free. That is a really good drop. The lab will give a range when they give the results. Your doctor should be able to tell you what they were. Some of us will always have a few antibodies floating around and as long as she isn't having symptoms that is from most labs I have seen a nice low score.
  24. ravenwoodglass
    I would go ahead and start a trial of the diet. You have had the testing and biopsies and a trial is advised no matter what the outcome of those. Biopsies do have false negatives. Your body may give the answer before that followup appt.
  25. ravenwoodglass
    Nightingale, It is great to hear things are going well. It great that you have had so many good restaurant experiences. It is wonderful when those migraines go away!
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