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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    It may down the line I don't know for sure though. One thing to also consider is that many labs only test for 2 of the celiac associated genes. That happened in my family and resulted in doctors 'taking away' the previous blood and biopsy celiac diagnosis that one family member had gotten. That family member then abandoned the diet and started considering...
  2. ravenwoodglass
    Perhaps but it is not likely to get a doctor derived diagnosis. That was the 'old fashioned' way of testing for DH before the biopsy to look for antibodies. Don't know if some 'old school' doctors might consent to doing this test under their supervision. They would apply and check after a few days at the office.
  3. ravenwoodglass
    I would stick with the diet strictly if I were you. You have not only had symptom relief but have also seen your TTG go down. I know the diet is inconvient but it seems to have helped you a great deal. Your continued GI issues could be related to cross contamination if you are not being careful to avoid it. You could also have something else going on so...
  4. ravenwoodglass
    Yes therapy can be very helpful for this. I went to a PT for a few months both before and after celiac diagnosis. If fact it was the PT who was the one who encouraged me to see the doctor that finally diagnosed me celiac. I had given up by that point as the doctors kept adding on false diagnosis after false diagnosis. She literally saved my life. The problems...
  5. ravenwoodglass
    Yea I would push the procedure back another month. Even then you may still show a false negative on the endo. If you find your symptoms come back on the challenge your body is giving you the answer but that doesn't mean the endo would come back postive at that point.
  6. ravenwoodglass
    Mushroom has given you some good advice. I am going to add my concerns on all those scripts. I am not a medical professional so please don't take this advice as coming from one. If you haven't been on any meds previously you may want to hold off or take a minimum amount of them for a couple of weeks. You may find you don't need them once the inflammation...
  7. ravenwoodglass
    Please do start the diet the day the endo is done. False negatives do happen with those so you need to do a dietary trial no matter what the results. Your periods may come back after you have been gluten free for a while.
  8. ravenwoodglass
    The original post was from about 3 years ago but the water retention issue is a common one for us. After I was diagnosed I lost so much water weight I dropped down from a size 12 to a 4 in less than a month and also lost a full shoe size. When glutened I have my belly blow up again to the point where I look preggers and many of us experience that. It is also...
  9. ravenwoodglass
    This happens with a lot of us. I think the body is so happy to have nutrients that it can absorb again that it just keep up the signaling that we are hungrey. It should level off after a while but yea when you haven't been hungrey for so long it is a great feeling. Try and feed that hunger with as much whole nutritious food as you can.
  10. ravenwoodglass
    If your GI doctor is not doing follow up bloodwork go to your GP for it. You may have gluten sneaking in somewhere you don't expect. Look at what may have changed when you started getting symptoms again. Are you on any generic meds? They can change binders at will and should be checked with each refill. New cosmetic or toiletries? New arts and crafts or remodeling...
  11. ravenwoodglass
    Well now you know you don't want to do that again. There are reasonable priced skin care products that are gluten free. I use the Garneir line. Do read the labels but if gluten is in there they will list it. If you ask in the products section about cosmetics and toiletries you will get responses from others as to what they use. Don't beat yourself up about...
  12. ravenwoodglass
    It may be the only way they ship. Since they are selling baked goods and likely don't use preservatives they would want you to get their product as fast as possible. If there is a phone number for the company you could try calling them and asking. If you know you tolerate and like their products you may want to place a larger order. Personally I would look...
  13. ravenwoodglass
    I have never seen a 'processed in' warning on their labels. The best way IMHO to get the answer would be to call the company. I am lucky to live somewhere that has a Wegmans so I rarely buy Kraft products so I have never called them to ask. If I used a lot of their stuff I would though.
  14. ravenwoodglass
    I agree with this. The systemic inflammation could also increase the risk for a lot of other things also including heart disease and arthritis to name just a couple.
  15. ravenwoodglass
    I would advise avoiding gluten in topicals especially if the rash is active. While gluten isn't thought to cross through intact skin skin that is broken is going to be absorbing it and it will enter the bloodstream that way and keep the antibodies active. I don't know how old your DD is but I wouldn't use Dapsone with a child and I don't think a doctor would...
  16. ravenwoodglass
    You really need to get back on the diet. IMHO yes you have the 'celiac' belly. It is easier now than ever to eat gluten free. Many restaurants are getting into gluten free menus. What were you eating for the 2 years you were gluten free? Fresh whole foods are going to be safest. If you don't know how to cook and that was a downfall, as it was for my son,...
  17. ravenwoodglass
    It does sound like you are both positive to the gluten challenge even though your reactions were a bit different. On the endoscopy, if you have been really gluten light for a while you need more than 2 weeks back on a gluten diet. Most advise at least 2 months. If you biopsy after just 2 weeks your chances of a false negative are pretty high. Even on a...
  18. ravenwoodglass
    Were you gluten free or gluten light before the blood test? That would cause a false negative.
  19. ravenwoodglass
    You don't need to wait for the results to start a dietary trial. Your body may give you the answer before you even get the results.
  20. ravenwoodglass
    I think Skylark gave you some good advice. After your done testing go ahead and give the diet a good strict try. False negatives on testing are not uncommon and you have nothing to lose.
  21. ravenwoodglass
    Hi I'm glad your feeling better. I may be the person you were referring to with the diverticulosis. My GI was amazed at how that had basically gone away. It sure wasn't expected. Did your doctor do an endo also? If the GI was looking for celiac in the colonoscopy he is a clueless GI. You need to go in from the other end to look for celiac changes. I am always...
  22. ravenwoodglass
    Get a letter from the employer stating that your work start has been delayed. Then go back to the food stamp office. They should be able to give you stamps to cover that gap that they were not aware of. Also do contact the Catholic Charity that was mentioned. As stated they do not require you to be a Catholic to access their services.
  23. ravenwoodglass
    Yes you are more likely to have a false negative being gluten free for a couple of months. Did you have any blood tests before you went gluten free? If those were positive then your doctor may diagnose based on those and the good results from following the diet. The scope can check for other issues so it is not a bad idea to have them done but without a gluten...
  24. ravenwoodglass
    Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all. I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once...
  25. ravenwoodglass
    What I find interesting is that my gene is considered an RA associated gene in the US but is considered a celiac related gene in other countries. If I had been gene tested before being diagnosed celiac I would have been labeled with RA since I had a lot of joint impact and other RA features. Since many RA patients also have 'IBS' they would have stopped looking...
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