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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I don't know if it is the case for you but once I went gluten free I started consuming more soy. It is in quite a few gluten free products. In myself it causes fatigue, constipation and joint and muscle pain. May not be an issue for you but thought I would toss it out as a possiblilty. Perhaps try eliminating soy as see if it helps.
  2. ravenwoodglass
    It can take longer than 3 months to heal when many other body systems are impacted. In the first part of your post you state you are on a regular gluten containing diet right now but you also state you have been gluten-free since Nov. Are you going back and forth between gluten-free and not gluten-free? If you are then it would be a good idea to get very...
  3. ravenwoodglass
    Sorry to have scared you with the mention of the test. The electromylogram is not as bad as it sounds. The needles are very, very fine and I didn't even really feel them even on the leg that had normal nerve function. I don't know if they would even want or need to do one on you. Do keep looking for the answer to your issues. The main thing they did when...
  4. ravenwoodglass
    Welcome. You never, ever have to apologize for venting or 'whining' here. We do understand how hard this is. Do read the Celiac 101 or Newbie thread as that will explain a lot about what you need to do to keep yourself safe. Please do have your children tested as celiac is strongly genetic. Do that even if they don't seem to have symptoms. Perhaps when...
  5. ravenwoodglass
    Welcome to the board. Basically my signature says it all. I hope you recover soon but it does take time for most of us. Ask any questions you need to and do know you are not alone in a long time of suffering. It will get better though. Ask any questions you need to and feel free to vent if need be.
  6. ravenwoodglass
    I had this, then called RSD or reflex sympathetic (SP) dystrophy, after surgery on my knee. You may want to ask for a referral to a neurologist who can do electromylogram testing and also a physical therapist may be helpful. It can take a while to resolve but the sooner it is diagnosed the better your final outcome may be. Your doctor works for you so don...
  7. ravenwoodglass
    You might try switching to a non-soy milk and dropping the Doritos for a bit a see if it helps.
  8. ravenwoodglass
    One of the biggest surprises, and one of the most welcome ones, after I was finally diagnosed celiac and went gluten free was that my arthritis went into remission. It took a couple of months but it was so nice to be able to hold a coffee cup, walk, type or button my clothes without pain. My hands still look a bit wonky but the pain is gone. I found out a...
  9. ravenwoodglass
    There are some folks with celiac who have no intestinal damage at all. Folks with DH are an example of this. While most of the attention to celiac damage is focused on the damage to the GI system it is an autoimmune disease that can impact pretty much any organ in the body. So IMHO yes it can be impacting folks before the GI symptoms appear. A couple examples...
  10. ravenwoodglass
    I do react to wheat based distilled spirits. Not many of us do but it is possible. I have no issues at all with potato based vodkas or other non-gluten grain derived alcohols.
  11. ravenwoodglass
    Interesting question. I would wonder though since, I think, mother's who are eating gluten are advised to go gluten free when they have celiac babies that are nursing if colostrum from gluten eating women would also be an issue. I'm curious to see what other's might think about this.
  12. ravenwoodglass
    You got a pretty complete answer from Mushroom so I don't have a lot to add. Do be sure if you see a derm for the rash that you specifically mention testing for DH as they need to do tests that will be looking for it or they won't find it. Try not to worry too much about the 'mass'. I know easy to say but not to do. Hopefully the ultrasound will give you...
  13. ravenwoodglass
    What works well for me for heartburn is Pepto Bismal liquid. It usually works in one dose.
  14. ravenwoodglass
    You shouldn't be trying to go gluten free until all celiac related testing is done. That will mess with the results by causing a false negative. Your regular GP can start the process by doing a complete celiac panel. It is a good idea to have vitamin and mineral levels also checked at the same time. That is a good place to start and your GI appointment is...
  15. ravenwoodglass
    Their gluten free soups are usually loaded with soy. Could your wife have an issue with soy? Early on I thought I was being CC'd by many gluten-free products when the real problem was that I didn't know I also had issues with soy.
  16. ravenwoodglass
    Could you be getting some CC somewhere? When you say you turn blue is it in lacy patches? Do a search on pics of Livedo Reticularis to see if the presentation might be the same. I have had livedo for many years and it is an indication of gluten CC for me now that I am gluten free. The same applies for trouble sleeping. It can be hard to eat safely when we...
  17. ravenwoodglass
    Celiac is genetic so it is quite possible she also does have celiac. Many of us have been called hypochondriacs and told we just wanted to be sick. Share your knowledge of the disease or refer her here to answer her questions if you don't care to answer them. She should be tested and your being diagnosed is a reason to give her doctor to test her. Celiac...
  18. ravenwoodglass
    There are more genes associated with celiac than just the ones for which they usually check. What tests were done that gave you the probable celiac diagnosis? If you are doing welll on the diet don't let the negative gene panel stop you from sticking with it. Your body's response is at present the best diagnosis we have.
  19. ravenwoodglass
    With the skin issue you could see a derm. But do make sure they are familiar with DH. They need to biopsy next to an active lesion and do a particular test for it. A diagnosis of DH is a diagnosis of celiac. You would need no further testing for celiac if that is positive.
  20. ravenwoodglass
    You should have your doctor run a full celiac panel first IMHO. There are false negatives but they have newer tests that are a big improvement over the ones we had even 10 years ago. Make sure they do the total IGA and the DGP tests. If you go with Enterolab order what you can afford. I did Enterolab (back when you could still order from my state) because...
  21. ravenwoodglass
    Just bring your own products with you. If I only need a cut I wash my hair right before the appointment and go with my hair wet. Then the stylist just has to spray a bit of water on it if it has dried too much before the appointment. When I have them wash my hair before the cut I bring my shampoo and conditioner and ask them to put a clean towel on the edge...
  22. ravenwoodglass
    Did your doctor give you an antibiotic for the salmonella? Some of us need one to resolve it. If you had an antibiotic you may need to go with some yogurt or other fermented food or probiotics to repopulate your good bacteria. If you didn't have an antibiotic you may need to go back to the doctor to retest and make sure that the salmonella has resolved on...
  23. ravenwoodglass
    Wouldn't want a vaccine. Don't really understand how they can do a 'vaccine' for an autoimmune disease. Celiac isn't something that is caught like the measles, mumps or polio. I also almost died before I was diagnosed and there is no way I would ever injest gluten again. I would hate to be a celiac in the placebo group for the clinical trials.
  24. ravenwoodglass
    Were you gluten light or gluten free before testing? That will cause a negative result. How many biopsies did your doctor take? They should have taken around 6 or 7. I have never heard of 'sandy' appearing villi but your villi don't have to be completely flat for diagnosis. Do you have a copy of the results? If you do post them here as there are folks that...
  25. ravenwoodglass
    Please do keep in mind that genetic testing is only a small part of the diagnostic process. There are folks with the celiac associated genes that don't develop celiac and there are diagnosed celiacs that don't carry one of the two most commonly tested for genes. In the long run it is your bodies response to gluten that is the best diagnostic tool we have...
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