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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Welcome to the board. How much have the levels come down and how high were they to begin with? How are his symptoms? If the numbers are still coming down and his symptoms are under control it can just be the levels are going down slowly. That can happen from what I understand. If you haven't already be sure to check out the Newbie thread at the top of...
  2. ravenwoodglass
    Your doctor has your best interests in heart when he is reluctant to give you dapsone. Dapsone is a very toxic med to the liver and celiac can impact liver function so you wouldn't want the two combined. IMHO it would be VERY unwise to do something like going to Mexico for Dapsone. You would need regular monthly blood testing while you were on it to make...
  3. ravenwoodglass
    We have been getting hammered in Upstate NY also. Windchills down into the -30s tomorrow and Monday. We have had more snow than we have had since a blizzard in the early 90's and the snow that is going on now will leave another 6 to 12 inches. My poor old body is not looking forward to more shoveling. And we haven't gotten anywhere near the amount some places...
  4. ravenwoodglass
    From your first post it sounds like your doctor considers you diagnosed. Personally I would just stay on the diet and have blood tests redone in a few months to make sure the antibodies are going down. Some people do feel they need to have the GI scope but if by chance the GI misses damaged areas there is the risk of a false negative on the biopsy results...
  5. ravenwoodglass
    Gee he runs like me. Just what I needed to warm up this sub-zero morning. I never pass on you tube clips but this one will be the first. Thanks for posting. Off to send it to a freind
  6. ravenwoodglass
    You can have shingles with no rash so you should see your doctor to make sure that is not what is going on. PN usually hits the extremities, hands and feet first. I don't know if it could present like it is for you. In my case it was like my hands and feet would 'fall asleep' with that tingling numbness. It was more uncomfortable than painful. The sensation...
  7. ravenwoodglass
    It does take some time to heal. It's hard but try to be patient with your body. You might want to consider less processed foods to make it easier. You wouldn't have to drive yourself nuts reading every single label that way. Some of us are able to add back foods we were sensitive at diagnosis once our antibodies have calmed down. I hope you heal quickly...
  8. ravenwoodglass
    If you were only off gluten for two weeks you should talk to your GI, or ask to speak to a nurse on the phone who will relay the info to the doctor, and ask this question of them. I don't think you would be fully healed in just two weeks so the doctor may shorten the challenge...if they can fit you in for an endo quickly. Stress the severity of your symptoms...
  9. ravenwoodglass
    Sorry you are having to go through this. If your symptoms get extremely bad do contact your doctor as they may cut the challenge short (especially if you had positive blood work) or the doctor may be able to give you some meds to get the symptoms bearable enough to do the full challenge. I was also only off gluten for about 2 weeks when I did my first...
  10. ravenwoodglass
    Why is your doctor insisting on a gluten challenge? To me that makes no sense as you were already diagnosed and did quite well for a long time. That diagnosis should be in your medical records despite your not having the endo at that time. IMHO instead of a challenge to re-diagnose you he should be rerunning a complete panel to see if you by chance have...
  11. ravenwoodglass
    Your doctor should have the issues that drove you to the GI in your records. When you speak to the nurse tell her that your GI neglected to do the blood work and only did biopsies and you want the blood tests done. Many doctors will just let you pick up the lab slip or even call the order into the lab. As far as being 'that patient' goes your doctor and...
  12. ravenwoodglass
    Do you live in the US? If you do you have a legal right to copies of the test results. Get them and if you want post them here as we have many folks who can interpret them for you. I also am upset that your doctor never did blood work. This can be done by any doctor so you might want to call your GP or Internist and ask to pick up a lab slip so you can...
  13. ravenwoodglass
    You have had two positive blood tests so you have celiac no matter what the biopsy results turn out to be. If you are still seeing the same doctor who thought one biopsy was enough I hope he will do the required 5 or 6 this time around. You may want to ask to be put on a cancellation list so if someone else cancels their procedure they can get you in sooner...
  14. ravenwoodglass
    If you are concerned you could call the maker and ask what grain from which the alcohol is derived. It could be corn based. I would be very cautious giving this to a child.
  15. ravenwoodglass
    The Ped GI sounds like a real winner....not! Doctors like her make me so mad. Unfortunately they are all to common. Good to hear that your regular doctor will at least run the panels for you folks. At 17 your son is old enough to see a regular GI rather than one for children. I would take him to another for adults after you get the results of his blood...
  16. ravenwoodglass
    Welcome to the board. Sorry you are having a hard time. Have you had your vitamin and mineral levels checked? If not it might be helpful to do so. It can take a long time to heal fully and absorb nutrients that our body needs. Some of us have to supplement stuff like the B's and iron long term. If your B12 levels are low it will be helpful to use a sublingual...
  17. ravenwoodglass
    It isn't uncommon for us to have additional intolerances that rear their heads after we have been gluten free. I thought for a long time that a brand of gluten free crackers was getting me even though I later found they were made in a dedicated facility. It turned out that I was also having problems with soy. Soy is in a lot of gluten-free products so it...
  18. ravenwoodglass
    I noticed the same thing after about 6 months gluten free. I attributed it to losing some of the edema I had prediagnosis.
  19. ravenwoodglass
    IMHO before you start eliminating more foods he needs to be strictly gluten free for a bit first. No sense in dropping foods he doesn't have to drop. It is doubtful that even being careful and trying to cook gluten free that eating at the firehouse is safe for him. Can he bring food with him for a while and see if that makes a difference? If he really likes...
  20. ravenwoodglass
    Thanks for posting. I almost never go down the cereal aisle so who knows when I would have seen it. I go shopping tomorrow so I'll have to give a good look for it. I always liked special K. Now if they would come out with a good gluten-free Raisen Bran I'll be all set. Good to know about the Eggos also. Wegmans have some that are pretty good and less than...
  21. ravenwoodglass
    Welcome. First off ((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))) I think there are many of us who have found the diagnosis and diet to be a bit isolating at first. So much of our socializing is around food and the fear of a reaction can keep us from joining in until we learn that we can keep ourselves safe. Many of us were also ill...
  22. ravenwoodglass
    Welcome to the board. Do NOT stop eating gluten yet. You have to be eating gluten for the GI doctor to be able to test. You don't have to eat a lot of it just enough to equal 2 to 4 slices of bread. It might help to eat your gluten at night. I hope you get some answers soon.
  23. ravenwoodglass
    If she has high dgp igg numbers then she wouldn't be just gluten sensitive. Have they tested the total IGA? If total IGA is low then her IGA related tests will be a false negative. The test she is positive on is one that is specific to celiac and you only need to have one test be positive to be celiac. Be sure to stay on gluten until all celiac related testing...
  24. ravenwoodglass
    If that amount will be a hardship for you if not reimbursed do call your insurance company first before you go to the appointment. You want that money either back or taken off your deductible if possible. Good luck and hope all goes well.
  25. ravenwoodglass
    Yes.
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