Jump to content

ravenwoodglass

Advanced Members
 View Profile  See their activity

  • Posts

    14,675

  • Joined

  • Last visited

  • Days Won

    153

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Very few people who are not celiac understand the cross contamination issue until they do some research. Alfred is doing the responsible thing and coming to us for information. I am thankful that he is doing so while his product is in development. You should be too.
  2. ravenwoodglass
    You need to put him back on gluten. He will need to be consuming gluten for the tests your ped will need to do. Your chiro should have told you that.
  3. ravenwoodglass
    Hopefully your symptoms won't be too severe. It seems your body is clearly telling you that it doesn't want gluten. The best advice I can give you is to keep your doctor advised of your symptoms during the challenge. Mine had me call him once a week and was told to call immediately if symptoms got too severe. Some doctors will stop the challenge and diagnose...
  4. ravenwoodglass
    Immodium is what I take if I have to. When possible I like to let the D run it's course since I want that nasty gluten out of my system as soon as possible.
  5. ravenwoodglass
    I had pretty severe DH at diagnosis. My DH started to heal within a short time of my going gluten free. For a few months a DH flare would be the first sign I had been glutened. After time it became one of the last symptoms to appear. At this point, after 12 years gluten free I will only get a tiny blister that goes away quickly on the rare occasions that...
  6. ravenwoodglass
    Karen has give you some good advice. Are you still having D? If so and it happens on a regular basis you may want to find out what is causing it. Immodium may also be helpful. When I subbed I would take a half dose 'to be on the safe side'. If you are having issues with incontinence without D you should consult your doctor. That can have many causes outside...
  7. ravenwoodglass
    Sorry I wasn't more clear in my post. It was very early in my day. I was referring to the children. In BlessedMommy's case any form of a challenge is of course out of the question. Her reactions are too severe. I think her plan to let the kids have gluten out of the house and test if symptoms develop is a good one.
  8. ravenwoodglass
    It can also backfire on you if you happen to be one of us that doesn't have one of the two most commonly associated celiac genes. While it is rare there are celiacs that don't carry one of those two genes. I am a double DQ9 which has only recently been discovered to be celiac associated. Doctors don't commonly check for that gene and one of my children who...
  9. ravenwoodglass
    Never had a problem with name brand Aleve. If you were on a trip were you eating at restaurants or other folks houses? Could you have gotten glutened at someplace like that?
  10. ravenwoodglass
    You need to call your GP and ask to be seen. It is possible that what is going on is a food poisoning like salmonella etc. Ask your doctor to do stool testing to rule that out. I know it is hard to eat feeling like you do but you do need to get some nutrition in you. Cream of Rice or Buckwheat, applesauce, plain baked or boiled chicken, rice or anything...
  11. ravenwoodglass
    Agree with the others. You need to stop not taper. Tapering off will not make the process any easier and will keep the antibodies and thus your symptoms active. Welcome to the board. Hope your feeling better soon.
  12. ravenwoodglass
    Sorry this happened to you. We always need to read ingredients. You may want to report this label issue to the FDA. Be sure to save the bottle if you are going to report it.
  13. ravenwoodglass
    I wish your Endo had thought to tell you that you needed to stay on gluten. You will need to go back on gluten to ensure that your biopsy is not a false negative. Be aware that there can be false negatives on biopsy even without having stopped gluten for a couple of weeks. The choice to biopsy is yours to make. It sounds like you have a doctor's diagnosis...
  14. ravenwoodglass
    Sorry it took you so long to get a diagnosis. False negatives on testing cost me a lot of years of pain also. I only eat at places that have a gluten free menu. I have had good luck with PF Changs and also Wendy's. I go into a web search and put in my zip code and the words 'gluten free restaurants' and quite a bit come up. I still make sure I tell them...
  15. ravenwoodglass
    False negatives do happen. It delayed my diagnosis for many years. However if you want to have celiac related testing done you have to be eating gluten. If you have stopped and improved and any introduction makes your symptoms come back then you know that your body doesn't want it. That will make a challenge difficult. You should get the total IGA and IGG...
  16. ravenwoodglass
    I had problems with both anxiety and depression prediagnosis. I no longer have any issues with depression unless glutened. My anxiety didn't resolve but that came from trauma rather than celiac. Many do have resolution of anxiety off gluten but if it doesn't after a couple months don't be afraid to get a bit of counseling to help you deal with it.
  17. ravenwoodglass
    The only way something like that would be feasible is if they were able to remove the psychedelic aspect of the drug. I don't think the general population would get much done during the day while they were watching the walls turn colors and their grasp on the reality around them was oozing away. Psychedelic drugs can also be dangerous for people with certain...
  18. ravenwoodglass
    Celiac is not an allergy. Celiac is an autoimmune disease that can affect any organ in the body. An allergy causes a histamine reaction and celiac causes an antibody reaction. The histamine reaction can cause a rash along with swelling in the throat. The celiac autoimmune reaction also causes a rash but without the throat swelling that you are seeing. Do...
  19. ravenwoodglass
    Welcome to the board. What were your blood test results? Were they high enough that your doctor was comfortable with diagnosing you without the endo? If that is the case then IMHO the choice of whether to biopsy or not is up to you. Since you have already started the diet the needed challenge for more testing could be quite unpleasant. Do check out the...
  20. ravenwoodglass
    Please don't stop eating gluten until all celiac related testing is finished. An endo would be the next step. If you could post the tests you have had, as another poster requested, that would help us help you better. Have you had your B12 levels checked? Deficiencies are pretty common for us and low levels can cause that tingling. What type of neuro symptoms...
  21. ravenwoodglass
    It sounds like you may have gluten ataxia where the antibodies attack the nervous system. The brain lesions may be UBO's which are similiar to MS lesions and associated with celiac. Unfortunately most neurologists are not aware of this. Mine wasn't and it delayed my diagnosis by years. After you are done with all celiac related testing do go strictly gluten...
  22. ravenwoodglass
    You are in a really tough spot. You may want to consider talking to the folks at unemployment. They may be able to help you find another job and also let you know if you leave your present job because of health issues if you will qualify for unemployment. It sounds like you have heavy work load at school and you need to be healthy to do your best. You may...
  23. ravenwoodglass
    It is possible you have NCGI but it is also possible you are celiac. Did your doctor run a total IGA test? If your total IGA is low that will cause a false negative. Your symptom cascade is a lot like mine. In my case it will be 3 or 4 days before the D hits but don't know if that will happen with you. It is IMHO significant that you were feeling alot better...
  24. ravenwoodglass
    I went through decades undiagnosed also. It can seem to take a long time for the inflammation to resolve. I did find that I have an additional intolerance to soy and once I dropped that my inflammation went down more quickly. If you haven't already it might be good to make sure you don't have an additional intolerance. Soy, casien (milk protein), and nightshades...
  25. ravenwoodglass
    No one is 'blasting' you because you want to choose a product labeled gluten free over one that doesn't. I was just as paranoid as you about it when I was first diagnosed because I was so severely ill pre-diagnosis and even a trace amount of gluten has me in pain, unable to think for about 3 weeks and also gives me a nasty GI bleed that can last up to 3 days...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.