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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    There are folks who will stop reacting severely. It is the reason that doctors used to consider celiac a childs disease that could be out grown. I think when it happens it is called a 'honeymoon' effect because for them they can be symptom free or the symptoms can change presentation but in the long run gluten will eventually catch up with them. We also...
  2. ravenwoodglass
    Mine are always the same and follow the same progression for the 3 weeks it takes to get over them. I don't know if this holds true for others. Have you eliminated dairy? We often need to in the beginning to heal. You need to try and do as much whole unprocessed food as you can. Also make sure you check all meds and supplements and generic meds need...
  3. ravenwoodglass
    I would let them know you can't have iodine when you go back in but it is doubtful that he will be using anything with iodine in your mouth. Do have them check and make sure the products they do use will be gluten-free though. The only things I have had issues with at the dentist is the numbing get that they use before the novacaine and the flavors for...
  4. ravenwoodglass
    Unless your sister had a spinal tap that confirmed MS she really needs to try the diet. My ataxia was misdiagnosed as MS, especially since they found the white matter lesions on the MRI. But since those lesions were not quite in the right places eventually my neuro did a spinal which he decided ruled out the MS. The symptoms of ataxia can mimic MS very...
  5. ravenwoodglass
    It sure isn't! Dancing gracefully barefoot or in flats is much sexier than trying to do a sexy spin into your partners arms and ending up looking like a windmill trying to catch your balance and ending up on your butt. Been there done that won't go back.
  6. ravenwoodglass
    The same for me. I had been told for years I had to just learn to live with the pain. Out of curiosity have you had a gene panel done? I didn't know until after my panel was done a few years after I was diagnosed that my celiac gene is considered an RA related gene here in the US. I don't think it is a coincidence that many with RA are also diagnosed...
  7. ravenwoodglass
    The first thing I did when my ataxia improved was to go out and buy a few pairs of heels. Not a smart move on my part. I soon learned that better didn't mean gone and after almost falling over a few times I realized that pretty shoes with low heals are more my speed. There's lots of them around nowadays, as the covered floor in my closet shows.
  8. ravenwoodglass
    Actually gluten just has to come into contact with a mucous membrane to be introduced into the blood stream. That is why in some countries instead of poisoning suspected celiacs a cheek or rectal suppository is used and then the area is biopsied a couple of hours later. A much more humane way of testing than used here in the US IMHO. If we use a gluten...
  9. ravenwoodglass
    I wouldn't do it. The reason why is because with celiac being an intolerance the effects of CC don't always show up right away. So the reaction we get today can, for some of us, be from something that we ate up to 3 or 4 days ago. That is one reason why it can at times be hard for us to figure out what got us. I think if you piggy back one glutening on...
  10. ravenwoodglass
    Congrats on the pain free steps and may a pretty and comfortable pair of shoes be in your future.
  11. ravenwoodglass
    I get severe depression for 24 hours after being glutened. And I do mean severe, I feel worthless and frankly am suicidal. Fortunately I have been able to clearly see the relationship between the glutening and the reoccurance of this and I am able to ride it out. As long as I am not reglutening it lifts after one day. Gluten can be a neurotoxin for many...
  12. ravenwoodglass
    Now is the time to try the diet. Testing for celiac misses far too many of us for many different reasons. You have nothing to lose by trying the diet. We are here to help and support you in that process. Ask any questions you need to and start your gluten free trial today. You need to be strict and give it at least a couple of months.
  13. ravenwoodglass
    You were diagnosed by a doctor. He didn't just pull the diagnosis out of his butt. I am sure you had considerable symptoms that lead him to suspect that you might be celiac and the elimination of gluten and the resolution of your symptoms proved that his suspected diagnosis was correct. Unfortunately some doctors get a 'god complex' when they get their...
  14. ravenwoodglass
    Yea they're a great company. I also heard that they have a celiac in the family. One thing I really like is they don't consider all distilled vinegars gluten-free. I am one of the unfortunate folks that reacts to distilled gluten grains and I was really happy when they started labeling their safe ones. If I ever relocate I'll decide where by doing a search...
  15. ravenwoodglass
    The iodine is,as far as I know, only for those of us with DH, dermatitis herpeformis. Iodine does not have gluten but there is something about it that can keep the antibodies active in the skin. It isn't an allergy it is just part of the DH reaction. An old test for DH was to apply iodine to the skin, cover it and then look at it in three days. A person...
  16. ravenwoodglass
    Have you made sure that all of those are for sure and for certain gluten-free?
  17. ravenwoodglass
    What did your doctor go off of to determine you are not celiac? False negatives are all too common on blood and biopsy both for a variety of reasons. Did they tell you to try the diet anyway? They should have if they didn't. If they are now in the process of retesting you for celiac don't go gluten free yet. When that testing is done do go gluten free...
  18. ravenwoodglass
    If it was a thick liquid that you cannot see through it was likely not gluten free. Your doctor needs to ask for a gluten free preperation. I was made very ill by nongluten free solution, I barely made it out of the xray dept before I had to run to the rest room when I was given it during my early gluten free days. When they made me get another one later...
  19. ravenwoodglass
    Apparently the HoneyBaked Turkeys are now gluten free. Something they were not last year. You actually replied to that post. Your reply is quoted below. Obviously your insistance that all are gluten-free and you have never heard of one that isn't is not accurate. Honeybaked Ham/turkey Is Now Gluten Free! https://www.celiac.com/gluten-free/index.php...
  20. ravenwoodglass
    I would go to a Wegmans in your area. There should be one somewhere close by. Their meat dept is very helpful about checking their items. That's where I usually get my bird.
  21. ravenwoodglass
    If you find one in Auburn please let me know as I am close to there. I do know there is a support group in Rochester but I don't know about Syracuse. You could try calling their hospital and asking, it seems like they would know if there is one.
  22. ravenwoodglass
    I generally buy Country Life, they have one mix that is specially for skin and hair that I have used for a long time. You should also check you shampoos and such for gluten ingredients as well.
  23. ravenwoodglass
    I would start using gluten-free skin products and see if it helps..
  24. ravenwoodglass
    The purplish color and the length of time the scarring remains is a hallmark of DH. I still have some scarring on my back and neck that is there 7 years after diagnosis and the resolution of DH. For me when those bumps 'popped' the fluid inside would seem to burn the surrounding skin which would then peel. I lived with DH for almost 40 years while being...
  25. ravenwoodglass
    Thanks so much. The product is even good for folks with dry mouth which is great news as that is one thing that didn't resolve gluten-free. My docs always blamed the dry mouth on all the meds I was on but I have suspected for a long time that it was likely Sjogerns but don't want to bother having them test for it at this point. My dentist said that the...
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