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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I wish labs wouldn't just 'skip' tests but oh well I guess they have their reasons. I can't really answer your question with any certainty especially with the known high rate of false negatives. I would suggest though that you give the diet a good strict try after you are done with testing. No matter what the test results are a trial of the diet should be...
  2. ravenwoodglass
    It's great that he is already putting on a bit of weight. That is a really good sign that you are doing the right thing. Keep it up for a bit before you worry about Crohns. I have a feeling things are going to be a lot better for him before too long. It really isn't uncommon for us to have gastritis and high inflammatory cells or esinophils before the villi...
  3. ravenwoodglass
    If you are going for an endo you need to stay on a gluten diet until that is done. Even then there is a risk of a false negative. Also you need to know that celiac and gluten intolerance are not allergies and will not show up in an allergy panel. Some of us do have both allergies and intolerance though. It is good that you saw some relief in the bloating...
  4. ravenwoodglass
    You do sound like you could be one of us. Do not stop eating gluten until you are done with testing. Celiac can impact the liver which would account for the results on your liver panel. After you are done with all testing do give the diet a good strict trial no matter what the results.
  5. ravenwoodglass
    You should make sure you are taking the sublingual form of B12 supplements as you may not absorb the pills you swallow until you are fully healed.
  6. ravenwoodglass
    And there are people who are firmly diagnosed celiac that don't have either of the two most common genes. I am one of them. Your doctor has to send copies of the tests if you request it. It is the law in the US that you have a right to them. You may have to go into the office to sign a permission form first though.
  7. ravenwoodglass
    I am glad you guys are seeing such positive changes. My son shortly after going gluten free remarked that he never knew what 'being happy' felt like. Since he was in his late teens then it was quite a heartbreaking statement. So happy for you and for him.
  8. ravenwoodglass
    I would give him a good strict trial on the diet. While it says the villi are intact damage can be spotty and get missed. It is not going to hurt him to do a trial on the diet as the changes that they have noted could be celiac related.
  9. ravenwoodglass
    The red itchy burning areas may be DH the skin form of celiac. Hopefully the diet will resolve that but do be aware that you should avoid iodine at first to heal it the quickest. I am keeping my fingers crossed for you that adding gluten back in after only 5 days gluten-free will not have too bad of a reaction. If however you should have a violent response...
  10. ravenwoodglass
    Are you having D? If your not don't take the Immodium. I would drop both casien and soy. Then if you are getting some relief after you have felt better for a couple weeks challenge them one at a time to see if one or both is the issue. Are you in Europe? If you are in Europe are you eating stuff with Codex Wheat starch? In think that is considered gluten...
  11. ravenwoodglass
    Very well put. I agree totally with this poster.
  12. ravenwoodglass
    Do stay on gluten until the endo is done, if you are choosing to have it. With very high blood test results some doctors are skipping the endo for diagnosis since it can have a false negative anyway. Your doctor is after as much money as he can get. He wants two seperate charges for two seperate procedures that can both be done at the same time. I agree with...
  13. ravenwoodglass
    Symptoms can really vary a lot. I also had a worsening in symptoms around the time of my periods, well until celiac put me in early menapause. The delayed D is fairly common for us. Also what you think are tummy viruses may actually be celiac symptoms. I am glad to hear you are going to give the diet a good strict try. I hope you have quick results, and you...
  14. ravenwoodglass
    Genetic testing is basically in it's infancy. We still have an awful lot to learn about celiac and the genes associated with it. There are many who carry the most common celiac associated genes and never develop celiac and there are people who are diagnosed celiac that don't have the most common two celiac associated genes. What happens if he is one of the...
  15. ravenwoodglass
    Please don't assume that if the test is negative that it isn't celaic. My doctors doing so cost me many, many painful years. When you are done with testing no matter what the results do give the diet a good strict trial.
  16. ravenwoodglass
    Has your GI done a colonscopy since this started? It might be a good idea if they haven't. Have you considered other intolerances? You may want to drop soy and dairy for a while and see if that helps. Are you female? If you are a visit with your OB/GYN might be a good idea.
  17. ravenwoodglass
    Welcome to the family. I am glad you got such good results so quickly. Sometimes there can be some ups and downs at first but we are here to help in any way we can.
  18. ravenwoodglass
    From all I have read in medical journals and articles there is no such thing as a 'false positive' only lots of false negatives on blood tests and biopsies. I hope they biopsied at least 6 different areas. The villi are not visible with the naked eye which is why they need the biopsies so the fact that everything 'looked' okay is not significant. The blood...
  19. ravenwoodglass
    Has your sister tried the diet despite the negative results? If not she may want to give it a shot. I also tested negative and had a lot of autoimmune disease that went into remission on the diet.
  20. ravenwoodglass
    Is she still legally married to the guy? If she is she should contact the military as she is entitled to not just health insurance but also the military gives a higher pay rate to those that are married to support their spouses. I was married to a man in the service who did the same thing to me. When I went for a divorce a few years after we seperated I found...
  21. ravenwoodglass
    I would just take them to the food pantry. I volunteer at one and they do accept gluten free food. If they don't take it for some reason you could always do a 'free' ad in your local paper. Many papers will print those for nothing and you might meet another local celiac.
  22. ravenwoodglass
    Your not making too many threads. You need support right now and that is what the board is for. You say you did this on purpose and have a history of hurting yourself. Did something happen to trigger this? If you have used hurting yourself physically as a way to deal with the stress of emotional pain please do consider finding a good counselor. They won...
  23. ravenwoodglass
    I agree with Richard. I am about as sensitive as someone can be and if Heinz vinegar had a gluten issue I definately would react. You may just not tolerate vinegar.
  24. ravenwoodglass
    What are you eating? It is best to go with whole unprocessed foods if your not already. Also be sure to check all your meds and supplements and take precautions to prevent cross contamination. As the other poster stated if you haven't talked to your doctor please do so ASAP.
  25. ravenwoodglass
    The test will be harder on you than on her. When my DD had one it took a surprisingly short time and when she was in recovery waking up she kept asking when they were going to take her in. Hopefully the test will give accurate results but do keep in mind that false negatives are not uncommon especially with young children. You don't need to wait for the results...
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