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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    (((((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))) I know that pain lingers. The impact on our families and ourselves for all those years can be significant. I live with the what if's every day and it is hard. I try not to think too much of all that I missed as my children were growing up, all the things I couldn...
  2. ravenwoodglass
    I have gluten ataxia although it has for the most part resolved since I have been gluten free. Before I was finally diagnosed I had gotten to the point where I needed canes to stay upright unless I could stay next to a wall. I also had severe memory and speech problems that went with it. I didn't slur my words but I could never get them out of my mouth. I...
  3. ravenwoodglass
    As the other poster said if your concerned you may want to schedule a cleaning. I don't think it would be an issue but you could ask the hygenist to make sure to make frequent use of 'the sucky thing' when the cleaning is being done. For cleaning my dentist uses just plain pumice with no flavoring just to be on the safe side. Most everything your dentist...
  4. ravenwoodglass
    Thanks for the well wishes everyone. I will be working at a home improvement store. It is a family owned business that has been around since the 60's. I have shopped there for 20 years and some of the folks working there have been there since the place opened. It's a good company to work for although the starting wage is low. They do have plenty of opportunity...
  5. ravenwoodglass
    Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did...
  6. ravenwoodglass
    If you have mixed other gluten free cakes in it and not had an issue with them it might not be the mixer that got you. One thing that is hard, especially at first, is figuring out what may have glutened us. Some of us have delayed reactions so it isn't always the last thing we consumed. It can be something we consumed even up to a couple of days before....
  7. ravenwoodglass
    Welcome to the board. Yes those eroding teeth could be Celiac related. To answer your other question about sero-negative Celiac that is when you have a false negative blood test. I am one of that group and it took many years to get diagnosed because of that. Both my children did have positive blood tests though. After all Celiac related testing is done you...
  8. ravenwoodglass
    Maggie loves her veggies too. There was one day when I didn't realize I had run out of her mixed veggies when I cooked her food. She acted like I hadn't fed her at all just stood by her bowl looking at me then shoved it over to my feet with her nose. I make sure I don't run out of those veggies now.
  9. ravenwoodglass
    I found it interesting. My DD, who was both biopsy and blood work positive, had her's done and was told she didn't have the genes. Thus they said her diagnosis was a false diagnosis. I then had my genes tested. Turns out I don't have either one of the two most commonly tested for celiac associated genes either. I have a double dose of a gene that is recognized...
  10. ravenwoodglass
    I don't know if this is available in your area but here we have hospitals and labs that will charge a sliding or no fee scale to folks that have a low income and no insurance. You would apply through the hospitals finance office. My local hospitals will cover anything billed by the hospital including lab work that might need to be sent out. The only draw...
  11. ravenwoodglass
    I feed my little girl Taste of the Wild Grain free dry in the Venison and Bison form along with a homemade mix of boiled chicken thighs and mixed veggies that I grind up in my food processor. She thrives on it and seems to do better than when I was mixing canned dog food with the dry. Cheaper and I know what is in it. Some times I will also fry up ground...
  12. ravenwoodglass
    Welcome to the board Josh. You are eating the same foods as you do at home but how are they being prepared? Could cross contamination in the kitchens where you are staying be an issue?
  13. ravenwoodglass
    First off your GI is pretty ignorant about celiac. The fact you still have villi that are impacted may mean that you have not been as gluten free as you thought you were being. If you are sharing things like toasters, butter, nut butters, condiments, a shared colander, baking with gluten flours for others, eating in restaurants that don't have gluten-free...
  14. ravenwoodglass
    I am sorry you are having such a hard time with your diagnosis. You feel like you are dieing because you are continueing to poison yourself. You have children. They need you and need you to be healthy. As hard as it is on you it is just as hard on them to see you in the condition you are in. I wasn't diagnosed when my kids were young. They grew up watching...
  15. ravenwoodglass
    You say you have been following an herbal protocal for treating Lyme for quite a few years now. I have to wonder if perhaps one or more of the herbs you are using is contributing to the issues you are having. Have you tried withdrawing from that protocal for a time and then if needed adding the herbs back in one at a time to see if one or more of them might...
  16. ravenwoodglass
    What was the one test your doctor ordered? The doctor really should have done a full panel. Can you see if you can get the doctor to order a full panel or perhaps the naturopathic doctor could order it? If you can you should wait until all celiac related testing is done to start the diet. However if your doctor won't order more testing for you then you really...
  17. ravenwoodglass
    After you get your results from the panel your doctor drew ask him if he will prescribe the supplements you need. I am pretty sure things like B12 injections or iron infusions will be covered but don't know if others will be. While you are waiting make a call to your insurance company and ask. A freind of mine does get his through his doctor and his insurance...
  18. ravenwoodglass
    It is good that you now have clear confirmation of what is going on with your daughter. We are here to help you make the changes you will need to make to keep her healthy. It is overwhelming at first so ask any questions you need to ask. Also with her now firmly diagnosed you do need to make sure everyone else in the family is also tested whether they appear...
  19. ravenwoodglass
    Got that freinds email address? If you do maybe send her some links from the NIH or other reputable sites about the disease. Hopefully you didn't let that person ruin the event for you. At least the food and service were good and you know you can safely go back and have a good meal but perhaps without that 'freind'.
  20. ravenwoodglass
    Have you got a hot plate? If you do bring it and a small pan and some silverware with you to heat up gluten-free soups, Dinty Moore beef stew or other gluten-free prepared foods. Cheese and Hormel pepperoni make a good snack. Fruit, nuts, chex cereals, peanut butter and some Udi bread. The most important thing is to have a good time. Enjoy your trip.
  21. ravenwoodglass
    That's really great news! Thanks for the update and I hope you continue to improve. It is wonderful to get your life back.
  22. ravenwoodglass
    Did you feel better gluten free? Did you react when you went on the challenge? If the answer to those questions is yes IMHO that combined with your positive blood test should be enough to convince you to get back to being gluten free and stay that way.
  23. ravenwoodglass
    The grandkids bucket. I take it from that it was Halloween candy. I know it seems strange but companies whose full size candy is safe for us to eat often have mini-size holiday ones that are made by different companies or in different plants that are not safe. It may not be a blood sugar issue that made you nauseous it may be that you were glutened.
  24. ravenwoodglass
    First off your doctor says the tests are 90% accurate. What if you are one of the 10% for which they are not accurate? Doctors going off those blood tests cost me years of my life and some permanent damage. It sounds like you have been through a lot of what I went through, doctors and more doctors and tests and more tests and doctors still throwing their...
  25. ravenwoodglass
    Do you have any Pepto Bismal liquid? You could try that. However if this is a pain that is different than he has ever experienced don't assume it is gluten related. If it is severe a trip to the ER might be a good idea.
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