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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Your not alone. We understand. Many of us deal with the same anger, thoughts and regrets. The loss for many of us goes far beyond just the hours spent sick. You have a right to be angry and to grieve. Don't give yourself a hard time about that but also try not to let the grieving process and the anger hamper your moving forward. I hope the world brightens...
  2. ravenwoodglass
    Welcome to the boards. You were lucky they were able to diagnose you so quickly. Imagine if you felt like that for years. Read as much as you can here and ask any questions you need to. I hope you feel better quickly.
  3. ravenwoodglass
    You sure sound like one of the family and the increase in intraepithelial lymphocytes is a common finding with celiac. It sounds like the doctor saw changes during the endo that really made him pretty certain with your symptoms that you are celiac but when the path report came back it wasn't as clear as he hoped. Your doctor did confirm in the end that...
  4. ravenwoodglass
    We have had lots of it. It is pretty but my body is way to old for all the shoveling. I am really thankful that everything is done but we have already had one family member who won't be here for the holidays because of the weather. As much as I want to see my DD I am really fearful of her driving home this holiday. We have a mall not to far from here...
  5. ravenwoodglass
    The college should let you do either. Contact the Registrar's Office this morning and your potential employer could have it later today. It sure isn't good driving weather here right now, I am also Upstate, so glad I got most of what needed doing done. Good luck with the position it would be a great way to start the new year.
  6. ravenwoodglass
    I really should have said the end stage of the gastrointestinal effects. I still wonder where my end stage would have been in my neuro effects. Not far from where I was at when diagnosed I suspect. Unable to read, barely able to walk, memory lapses and trouble talking. I could go on but I won't. I was I suppose a 'silent' celiac for many years in the...
  7. ravenwoodglass
    Good thought as the company could have reformulated. When you do try it again just to be on the safe side you might want to do a patch test. Mix up just a little and then put it on the inside of your arm and leave it there for a day or two. If you have developed an allergy to the henna itself, which is a possibility whether it has gluten or not, much better...
  8. ravenwoodglass
    You have a very smart GI doctor there. As said there are many of us here who recognize that celaic and NCGS are often different stages of the same disease. The total villi destruction is the end stage of the disease and you are so fortunate that your doctor recognizes that the steroids you are on could have impacted the results of testing. More doctors...
  9. ravenwoodglass
    It usually takes the antibodies a while to leave the skin. I know it isn't the answer you want to hear but it will vary with different people. If they can accomodate the gluten-free diet successfully perhaps they could use a container of noniodized salt for her food for a bit? Have you asked? They might let her bring her own to the table if they know...
  10. ravenwoodglass
    This makes sense. Twitches would be misfires in the nervous system and since the B12 helps nerve conduction that would help with the misfires. I hadn't thought about it but I don't get those either anymore. Or the drooping eyelid that sometimes would drop so far that it interfered with my vision.
  11. ravenwoodglass
    Still praying for all of you. I hope he turns around soon. Don't lose hope the doctors prepare us for the worst but the worst doesn't always happen.
  12. ravenwoodglass
    If your biopsy is the end of January you really need to be eating gluten now. The chance of false negative is high with that short of a challenge. That said I wish I could give you some tricks to make the challenge easier. Perhaps others will have some hints. The one thing I do want to say is that you should keep track of your symptoms from the day...
  13. ravenwoodglass
    I agree with the others. It does sound like a gluten reaction. Also the foods you are having a reaction to are gluten foods. You basically have done a gluten challenge. You drop it, you feel better, you add it back in and symptoms come back.
  14. ravenwoodglass
    I am glad she was so prompt to see you and biopsy. I do hope she didn't do the rash itself but the skin next to it. If she biopsied the rash it will be negative even if it is DH.
  15. ravenwoodglass
    I am so glad you finally know and can start healing. I hope things improve quickly for you.
  16. ravenwoodglass
    The sublingual B12 is basically instantly absorbed. It goes right from your mucous membranes to your bloodstream and your brain. It metabolizes very quickly. It also leaves quickly so do make sure you keep taking it for a bit.
  17. ravenwoodglass
    The only 'cure' for DH is the gluten free diet. You can get a prescription med called Dapsone but that only helps the skin and will not help with any other issues. Dapsone does not stop the progression of the disease or the autoimmune process. If you have DH you really do need to be gluten free.
  18. ravenwoodglass
    I use Estee Lauder's MagnaScopic. Although I don't know for sure if it is waterproof I never had an issue with it running. It also is soy free if memory serves.
  19. ravenwoodglass
    If this started after taking the supplements I would stop them for a while and see if it stops. Are you sure they are gluten free? Do they have barley grass by any chance? The metallic taste you describe is something I get from barley but that may not be the case for you. Do get checked for diabetes as the symptoms you describe could be from high blood...
  20. ravenwoodglass
    The sublingual B12 is the one that is going to help the most. With the B12 do not worry about the high level in the tablet. B12 is a vitamin that has no toxic level. You body will simply pee out any that it does not need. I think you will notice a difference within a fairly short time.
  21. ravenwoodglass
    Just a quick warning if you are going to have the GI doctor do an endo you MUST not go gluten free until after the endo is done.
  22. ravenwoodglass
    The baby boy is doing well from what I was told. Fortunately he has a supportive family. He is such a sweet and kind person that he has a large circle of friends. She had been home from the hospital and seemed to be doing well. It was extremely sudden and unexpected. Thank you all for your prayers.
  23. ravenwoodglass
    IMHO stands for 'in my humble opinion'. You definately need a new PCP. You might want to ask your endocrinologist if he has any recommendations for a new primary care person. Fortunately you are at an age where you need to get away from a ped so you don't have to say your not happy with him, just that you want a new doctor. One last question, are...
  24. ravenwoodglass
    That does sound like DH. When you see the derm again you might want to ask to have the biopsy done looking specifically for DH. Go to a website like Pubmed and print out the description of the biopsy process. If the doctor seems clueless about the need to biopsy the skin next to the lesion then give him the printout. As far as how long it takes the DH...
  25. ravenwoodglass
    Mine is very dark brown but we also have redheads and blondes in the family. I started going grey in my teens though. Anyone else? I think a lot of us do.
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