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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I just tried to PM you through the link on the profile and it is still saying I don't have permission. I do seem to be able to PM through my mailbox though.
  2. ravenwoodglass
    I would get a message that said that I don't have permission to send a message. I am going to try it again this morning and see if it is working now.
  3. ravenwoodglass
    I don't seem to be able to PM other members all of a sudden. Never had this issue before is there a problem with this process on the board?
  4. ravenwoodglass
    Good luck finding a psychiatrist who understands that celiac can impact us psychologically. Here are a couple articles to share with the psychiatrist. Whether she will read them and then do some more research I can't say. But celiac can definately be a direct cause of mental illness and many times, but not always, those psychiatric disorders will resolve...
  5. ravenwoodglass
    They, meaning anxiety and depression, can cause folks to not want to be around you as much. They can also effect your perceptions of what others are saying and their body language. Having extreme anxiety can effect the things we do and don't do. Most with anxiety will try to avoid situations that make us anxious so we may pull away from others or be seen...
  6. ravenwoodglass
    D is diarrhea, CC cross contamination, DH can be either the skin form of celiac or can stand for dear husband, DD is dear daughter, DS dear son, C is constipation, IMHO is in my humble opinion, hope this helps.
  7. ravenwoodglass
    You may want to ask if you can try one of the older meds first. IMHO doctors push the newer meds to often and they often have risks that are not even known yet. There is also nothing wrong with trying supplements and behavioral therapy for a time first while the gluten reaction gets out of your system.
  8. ravenwoodglass
    Let your doctor know how badly you reacted to the challenge. You do know the answer as to whether your body wants gluten or not now. I hope the reaction stops soon.
  9. ravenwoodglass
    There is one celiac associated gene that is considered an RA gene here in the states.It is the one I have a double copy of. I was thought to have RA for quite some time. My arthritis has been in total remission since about 6 months after I started the diet. Celiac causes a great deal of inflammation and that inflammation can attack just about anywhere in...
  10. ravenwoodglass
    I was thought to have MS for a long time. Both because of my symptoms and because the UBO white lesions are similiar to the lesions found in MS. Mine were in the wrong place but it wasn't until I had a spinal tap done that they firmly ruled out MS. Ms lesions will throw debris specific to the demylinating process into the spinal fluid. UBOs don't. Unfortunately...
  11. ravenwoodglass
    If your allergist will help with food intolerances the doctor could be quite helpful I show up negative in blood work and my allergist literally saved my life. Not all will deal with them though. Another thing we discovered was that although I tested highly allergic to 98 out of 99 things I was tested for after a few months gluten free those other allergies...
  12. ravenwoodglass
    In general he needs to combine rice and beans to form a complete protein. If he does wish to do the veg along with gluten-free you may want to have a visit with a dietian or nutritionist. Being a vegetarian can be complicated plus he shouldn't overload on soy as that may set him up for soy protein intolerance. Not a for sure but that is what happened with...
  13. ravenwoodglass
    It can take awhile for a B12 deficiency to show up in the blood work. Plus did you see the actual results. When I was tested prediagnosis I was told my levels were in the normal ranges but it turned out my level was 260 when the cut off was 250. Even though the results were in the 'normal' range my neuro had me start the B12 sublinguals anyway. Even prediagnosis...
  14. ravenwoodglass
    Now that you are gluten free that should help matters if not resolve them. There is really nothing a doctor can do for gluten ataxia other than to tell you to be strict with the diet. As far as the cyst and the sinus issue go perhaps a ENT (ear, nose and throat) can give you some guidance. Do get some of the sublingual B12 and be strict with the diet. It...
  15. ravenwoodglass
    The biopsy may be the gold standard for diagnosis but more doctors are accepting the positive results of the blood work and resolution of symptoms on the diet. If your son doesn't want the endo his doctor can't force him to have one and if he will be compliant with the diet without one then the choice is his to make. Do make sure he understands what he...
  16. ravenwoodglass
    The white lesion is likely from gluten ataxia which can mess with balance. I have multiple lesions and found out years post diagnosis that in some countries they are considered diagnostic of celiac. The symptoms you describe with the tingling etc is what is associated with neuropathy. Sublingual B12 should help the nerves heal more quickly. It does take...
  17. ravenwoodglass
    I wish I could say she is but no.
  18. ravenwoodglass
    Considering your also getting GI upsets I would say yes you may be getting CC'd somewhere. It could be CC from the cereal your eating that may be cross contaminated so it would be a good idea to switch to something else. If you like a hot cereal Pocono buckwheat is grown in dedicated fields and processed in a dedicted plant. It is very similiar to Cream...
  19. ravenwoodglass
    I am glad to hear it doesn't seem to be anything other than a glutening. Pepto helps me with that stabbing pain that comes with my gluten symptoms, don't know if it would help you but it might be worth keeping some on hand just in case. If you have had D that was intense for a couple days you may not have a BM for a day or so. The D can clean us out real...
  20. ravenwoodglass
    It does take a while to heal. 2 weeks is not long enough to have fully healed yet. I would call the doctor and ask for a script for a 'loading dose' of vitamin D. The amount your taking doesn't seem to be enough if your numbers are still going down.
  21. ravenwoodglass
    I would make an appointment with a derm. If you still have lesions on your scalp ask the derm to test for DH while you are there. I know how frustrated and upset you must be. I hope the doctor can help you with this. Just in case it is DH, have you eliminated iodine from your diet? Iodine in salt and seafood can keep the antibodies active.
  22. ravenwoodglass
    And that is exactly what happened with my daughter. Even after having postive blood and biopsy by a GI in her teen years she got gene tested when she went to college and the doctor convinced her that she wasn't and never could be celiac. Now that she is back on gluten all her symptoms are attributed to 'stress'. That was the reason I got my genes tested...
  23. ravenwoodglass
    If your not already gluten free you are better off continueing on gluten until the tests. If you go gluten free for a couple weeks then load up the night before the tests you may become more ill than you are now. Have you called the doctor and asked if you can just pick up a lab slip for the tests? You may have to ask to speak to a nurse to get an answer...
  24. ravenwoodglass
    Are you taking any prescription or over the counter meds? If you are have you checked them with the maker to be sure they are gluten free? Also how much sleep are you getting? If it is less than 7 or 8 hours that could be contributing to the problems also.
  25. ravenwoodglass
    Children do have a higher rate of false negatives on blood testing. As others stated if she is low in IgA that will cause a false negative but even some folks with a good IgA level will sometimes show false negatives. As far as the DNA testing goes most doctors only test for two of the nine celiac associated genes. There has been research recently that there...
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