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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I get that but just with barley. Is she waiting on a scope? If so keep her on gluten. If she is done with celiac related testing then get her on the diet. You only need one positive blood test to be celiac.
  2. ravenwoodglass
    I'm hopefull we caught it soon enough and keeping my fingers crossed. The 'somebody is slamming my head into the pavement' feeling is a bit better this morning. The rash that was just beginning to spread onto my ear hasn't spread any more so that's a good sign. I don't remember what she called the nerve but it runs up the back of the skull. She did say to...
  3. ravenwoodglass
    Thanks for your replies. The doc gave me Valacyclovir. So far no difference but it hasn't spread any more since yesterday. Have to take it every eight hours. thanks for the link since it appears to be important that I take these every eight hours so will figure out a dosing schedule today. I'm hoping we got it started early enough since symptoms started...
  4. ravenwoodglass
    Anyone have shingles and be able to give me some ideas for pain relief? Other than cutting off my head. Thought I had a reaction to a new shampoo but it was only on one side of my head. Doctor confirmed today it is shingles. Must say I'd much rather deal with a bad DH outbreak any day.
  5. ravenwoodglass
    You are correct that if you don't go back on gluten you can't be tested for celiac and the gene tests are not diagnostic. Those can only tell you if you have one of the two most common celiac genes. You do seem to have found the answer to your issues though. With the seriousness of your problems I don't think I would be willing to do a lengthy challenge...
  6. ravenwoodglass
    Sorry you are feeling so awful. I could be wrong but I doubt it was the cooking spray that got you. There are some that are made just for baking but they have wheat clearly listed. You are really new to the diet and it does take some time to heal. things can be very up and down for a bit at first. Please be aware that our reactions can be delayed so it isn...
  7. ravenwoodglass
    Keep him on gluten and make an appointment with the GI doctor. You could ask to be put on the cancellation list if you can get there on realitively short notice. I hope you can get some answers soon.
  8. ravenwoodglass
    Maybe what they mean is you can have the rash without the GI issues that most consider the 'hallmark' of celiac. I had the DH rash for many years before I had intestinal symptoms severe enough to warrant attention. Looking back I now know the constant rumbling tummy and constipation were symptoms but I thought they ere just normal for me. I did also have...
  9. ravenwoodglass
    "other than IgA suggesting intolerance to gluten" IGE tests are the ones for allergies. IgA is a celiac test. I have to wonder why the doctor ignored this positive result. Can you get your GP to run a full celiac panel for you? You do sound like one of us. My Mom was told when I was young that my rash was 'poison ivy in my bloodstream' and I would...
  10. ravenwoodglass
    Were you still eating gluten foods when you were tested? If you were not then the tests would be negative. Can you get an appointment with a celiac knowledgable dermatologist? Your rash may be DH, the skin form of celiac. Some folks with DH test negative on blood tests but a diagnosis of DH is a diagnosis of celiac and no further testing would be needed.
  11. ravenwoodglass
    There was one thing that might connect that I saw on Medscape. The article seemed to have a lot of good info. Open Original Shared Link "Systemic examination for RP can be helpful to rule out syndromic RP, which are conditions that have pigmentary retinopathy and mimic RP, such as the following: " .... "Fat malabsorption, fat-soluble vitamin...
  12. ravenwoodglass
    Have you been gluten free since diagnosis? If you have then your tests should be negative. You do still have celiac you have just healed.
  13. ravenwoodglass
    Do you have someplace where you can cook there? If you do then you may want to go with whole foods as much as you can while you are there. There are dining cards for different countries that you may find helpful if you have to eat prepared foods. I hope you are feeling better soon.
  14. ravenwoodglass
    Considering your numbers are that high the chance of a false positive in your case is slim. sometimes numbers will only be elevated a little bit but your numbers are really high. Your doctor may be planning on retesting your antibodies and your recovery and diagnosing that way. If he wants to do an endo make sure you go back on gluten for at least a couple...
  15. ravenwoodglass
    If this happened both times a day or two after the prep and procedure I am wondering if you could have been reacting to something either in the prep or in a medication that you were given. Do mention this to your doctor if you should need another scope in the future. You are very early into healing and the celiac lifestyle. Be sure to read the Newbie...
  16. ravenwoodglass
    Those do look like positive tests but can't tell for sure without the lab ranges. The endo is really easy to go through in most cases. You could try talking to your GI and seeing if he would diagnse based on the antibodies going down and symptom relief on the diet. Most will want you to have the endo though. Do make sure that you keep eating gluten until...
  17. ravenwoodglass
    He had to have known I was awake because I kept telling him he was hurting me. Turns out I have a twisted large intestine and he was having a hard time getting the scope past that area. Versed is a 'twilight' drug. It is supposed to sedate you but keep you consious enough to follow any direction the doctor gives you. It causes something like amnesia so you...
  18. ravenwoodglass
    Good article, thanks for posting.
  19. ravenwoodglass
    This is such gret news! I first presented with ataxia at about the same age as she did. I progressed much slower but by the time I was diagnosed I could barely walk unaided, had trouble with swallowing and choking (very scarey!), aphasia, vision difficulties, migraines and memory problems along with depression that was at times so severe that if I hadn't...
  20. ravenwoodglass
    Thanks for posting this. I was prescribed PPIs at diagnosis. So happy that I chose not to take them. I figured I would wait and see if my stomach pain was relieved by the diet and within less than a week gluten free my daily stomach pain was gone...unless I am glutened or soyed. On those now rare occasions I have found good ole liquid Pepto Bismal to take...
  21. ravenwoodglass
    I wish doctors would give us the advice you two have. I started to keep a journal six months in when I kept being 'glutened' even though I was being very careful. I thought a company that was solely gluten free was CCing me somehow. Turned out all their crackers contained soy. It was also helpful later when I was doing some work renovating and removing wallpaper...
  22. ravenwoodglass
    It sounds like you had a reaction simliar to mine when I had a scope done in an outpatient clinic without an anesthesiologist. The doctor didn't believe me when I told him how horrible the experience was until I told him how many times he said 'more Versed'. I had the procedure redone with a different doctor in a hospital with an anesthesiologist and had...
  23. ravenwoodglass
    That doesn't sound odd at all. Thankfully she was diagnosed young and hopefully will heal and be feeing much better soon.
  24. ravenwoodglass
    Some doctors might diagnose based on response to diet along with a decrease in antibodies gluten free. It is good that you have copies of your celiac bloodwork and other testing. You might want to jot down symptoms you are getting, their intesity and duration when you are accidentally glutened. That may help with diagnosis. If you haven't already do be sure...
  25. ravenwoodglass
    She is at a hard age to be different and she has a lot of stuff that has happened in a relatively short time. Now for the last month she has had another big differnce, a celiac diagnosis. She may have a bit of withdrawl but she also may be having to deal with less than sympathetic peers. If she eats in the lunch room kids could be messing with her there...
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