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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    You have gotten some great advice already so the only thing I have to add is I have DH and I also have had hives. The lesions you are showing look much more like DH than hives to me. I also was a false negative on blood tests, at least the older ones, I don't know if I would have been positive on the newer DGPs. I hope you get some relief soon.
  2. ravenwoodglass
    I hope after your diagnosis that your doctor told your parents they, and any siblings you have, should be tested for celiac. It is pretty common for more family members to be diagnosed once one is. Do you go with your parents when they shop? If you don't you should so you can point out the safe things that you can eat. You say you want bread and pizza....
  3. ravenwoodglass
    I know it doesn't seem like a good thing that this is starting to happen but it may keep you from getting labeled with IBS. Be sure to let the doctor know that the D is waking you up from sleep as that doesn't happen with IBS. Bring the list of celiac tests with you and request that the doctor add those to the tests he is already doing. I hope you get...
  4. ravenwoodglass
    How long ago did you have the celiac tests done? Which ones did they do? If you post the results we can tell you if they did a complete panel or not. If the test was a few years ago then you could ask them to rerun it. You need to finish all celiac related testing before you start a trial of the diet. Meanwhile read as much as you can here and ask any questions...
  5. ravenwoodglass
    Can you get copies of your test results? When blood tests are positive it is pretty certain you have celiac. Most of the celiac blood tests are specific to celiac but there is one that when only slightly elevated can be caused by other stuff. That is pretty rare though from what I have seen. You could try calling the GI and asking to speak to a nurse. Tell...
  6. ravenwoodglass
    No one is saying that celiac is not genetic. Just that not all the associated genes are commonly known. In my own family I have seen one person who was diagnosed with positive blood and biopsy and then years later had their genes tested and was told since they didn't have DQ2 or DQ8 that they couldn't have celiac. So now they are back on gluten and suffering...
  7. ravenwoodglass
    Call your doctor's office first thing in the morning and ask to speak to a nurse. The nurse will relay to the doctor what is happening and the doctor may tell you to stop the challenge or possibly give you some medication to help with the effects. Did you have any celiac blood testing done before you went gluten free? If you did and those tests were positive...
  8. ravenwoodglass
    More is being found out about genetics every day. My gene DQ 9 has now been shown to be also associated with celiac. A quick search of peer reviewed sites will show this.
  9. ravenwoodglass
    I hope you finish testing soon so you can get gluten-free and start feeling better. some of us do find we are able to tolerate dairy after we heal a bit so someday you may be able to eat some gluten-free cheesecake with that cup of coffee. One more quick note. You mention your doctor doing gene testing on you. If by any chance you turn out not to have one...
  10. ravenwoodglass
    Good luck on Monday. I have given you a link and a quote from the NIH on how they need to do a biopsy. Just as a 'refresher' for the doc before he does it. I hope he will do this for you but if he doesn't you don't need anyones permission to be gluten free. It is a good idea to limit iodine for a bit when you go gluten free as it can keep the antibodies active...
  11. ravenwoodglass
    Just found these in my local Wegmans. They come in 3 flavors. I got the cheesy one. Thought they were pretty good. Bigger than I remember gluten goldfish being but that's okay by me.
  12. ravenwoodglass
    Welcome to the board. You do need to be consuming gluten for any celiac related testing. You may want to call the doctor's office and ask to speak to a nurse. It is possible that your doctor told the GI about the severity of your reactions and that is why the told you to stay gluten free. It is also possible that (shudder the thought) they are not all that...
  13. ravenwoodglass
    While it is fairly rare there are diagnosed celiacs without the most recognized celiac genes. I am one of them. It sounds like your oldest has gotten some relief from the diet. That is a good thing and a good indication that she needs to be on it. Have you told her GI or ped about the continuing issues? It is possible that she has something else going...
  14. ravenwoodglass
    Welcome to the board. The doctor that told you he was 99% sure you have celiac (DH) did he put that in your record? If he did then you should consider yourself diagnosed IMHO. Has anyone done a celiac panel on you? If so what were the results? To answer your question, the biopsy needs to be done to the area next to an active lesion. If you don't have an...
  15. ravenwoodglass
    If your biopsy comes back negative IMHO your doctor failed to biopsy a place that was damaged (damage can be patchy). With blood results as high as yours there is not doubt you have celiac. If you are going to have the biopsy done do start the diet the day the test is done. No need to wait for results. With a family history, sky high blood work and symptoms...
  16. ravenwoodglass
    Welcome to the board. You found a big group of people who have gone through the same sort of things that you have. Some of us diagnosed celiac and others told they are gluten intolerant. It is great you are feeling so much better so no matter what label you fall under you are doing the right thing. There are those of us who developed symptoms as children...
  17. ravenwoodglass
    Call your doctor's office and ask to speak to a nurse. Tell the nurse what is going on. It will get relayed to the doctor and some doctors will have you stop the challenge or if they have a cancellation they may be able to get you in sooner. If you had positive blood tests the doctor may even diagnose you based on your blood work and reaction to the challenge...
  18. ravenwoodglass
    Yea Cheese Wiz is gluten free. In addition to the good advice you got from Bartfull keep in mind that gluten reactions can be delayed. What 'gets' us can be something we ate even a couple days before. I hope you are feeling better soon.
  19. ravenwoodglass
    You have a very savvy neuro there. It sounds like what your neuro is referring to as 'white matter intensities' are something that are also called UBOs or unidentified bright objects. I had them and my doctor was clueless and it was a few more years before I was diagnosed celiac and could begin to heal. In doing some research a couple years after I was diagnosed...
  20. ravenwoodglass
    While vomiting is not one of the most common issues it does happen to some of us. It can take some time to heal and our systems can be touchy till that happens. Keeping a food and symptom journal can seem like a pain but it can help you pinpoint other issues you may have. Do be sure to check your scripts, otc drugs and supplements to be sure they are gluten...
  21. ravenwoodglass
    While sipping on the Baileys and munching a delicious gluten-free cookie you brought with you.
  22. ravenwoodglass
    Sorry you are going through this. Has your doctor ruled out other things that could be causing the vomiting? If you do have celiac you need to keep in mind that reactions can be delayed so it isn't always the last thing we ate that makes us ill. Have you read the Newbie 101 thread in the coping section? If not you should so you know what you have to do to...
  23. ravenwoodglass
    I don't know if it will help you but my fibro symptoms seemed to be linked to soy. After I dropped soy the fibro issues resolved.
  24. ravenwoodglass
    Wondered how long before they would do this. Can't wait for the products to get into my local store. Thanks for posting.
  25. ravenwoodglass
    When you see the doctor on the 18th you might want to tell him you want just the endo done for now (unless this is your over 50 advised colonoscopy). Since you had positive blood work IMHO the endo is what he should be doing and it will save you the prep and expense.
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