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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Have the workers use plastic sheeting to block off any areas they are working on. I wouldn't let them come through your cooking area unless that section of your garage can be also sheeted off. While most new materials that are used are going to be safe the stuff they are tearing out may not be. One example ( that may not apply to your home) is non-toxic wallpaper...
  2. ravenwoodglass
    So sorry that you are going through all this. It sounds like your wife is the main problem right now and you are right to be fearful that she is doing harm not just to you but also to your children. Has she ever gone to a doctors appointment with you or can you get your records to show her (if she would even read them)? Is there any safe place where you...
  3. ravenwoodglass
    You need to take all the same precautions with NCGS as you do with celiac.
  4. ravenwoodglass
    Glad you are feeling better. Many drugs need to be tapered off rather than quitting suddenly. Your doctor or pharmacist should be able to tell you if the ones you are on is safe to just stop suddenly.
  5. ravenwoodglass
    Thankfully many younger people are being diagnosed without having to suffer for years or decades before doctors realize that celiac could be their issue. This should help to lessen the number of people with these types of serious complications. The advice to get regular check ups and not ignore symptoms could be a lifesaver. Even if your only symptom is...
  6. ravenwoodglass
    Sublingual B12 is helpful until we have healed as it is absorbed by the mucous membranes and can enter the system that way.
  7. ravenwoodglass
    It isn't uncommon to have good days and bad days for quite a while. The nervous system can take a longer time to heal than we would like. Sometimes gluten reactions can be delayed, in my case most smptoms hit 3 days later but some may find a reaction the same day. A food and symptom diary can be helpful for finding a pattern for glutenings and reaction time...
  8. ravenwoodglass
    Yes it did. They thought I had MS but a spinal tap didn't show any of the debris found with MS. I was then told they were just something that lots of people had and I jjust wanted to be sick. I wasn't diagnosed until a few years later.
  9. ravenwoodglass
    I found supplementing with B12 and a good stress B and C to be helpful in healing along, of course, with a VERY strick gluten free diet. You want the antibodies to stop the attack on your nervous system and even a small amount seemed to cause a set back. A good physical therapist also helped a great deal. Even after over 20 years post diagnosis I still get...
  10. ravenwoodglass
    Just because her result was negative before does not mean it will be now. Do get her retested with a full panel. It sounds like she may have more neuro impact than GI so her blood work may still be false negative. The antibodies can cause something called UBOs on a brain MRI which are similiear to the lesions founds with MS but in different places. Do keep...
  11. ravenwoodglass
    If you have one near you perhaps a Celiac Support group might help? It is a struggle and many folks don't understand how hard it can be first. Hang in there and I hope things get better for you soon. Feel free to ask any question and or vent as much as you need here too.
  12. ravenwoodglass
    You don't have to. You do not need a doctors permission to be gluten free.
  13. ravenwoodglass
    Do make sure to take copies of all the tests that have been done so far. If you don't have an online portal you can get then from get them from the doctor. They should have no issue with letting you pick up copies. Please don't go for that Whopper.
  14. ravenwoodglass
    Things are often up and down at first. I don't know about those specific items. If you can it helps to eat mostly fresh unprocessed foods for meats and single ingredient fresh or frozen like veggies and fruits. It can be hard if you are not someone used to cooking but you can add prepared gluten free stuff after you have healed a bit. A log book of what...
  15. ravenwoodglass
    You had a positive diagnosis with blood, endo and genetic markers when you were diagnosed. Blood testing has shown your numbers have come down and you have had some relief although you admit to a few glutenings. Your doctor now wants to do another endo and if that comes back negative for celiac they will put you back on gluten to see if you get sick enough...
  16. ravenwoodglass
    Have you tried Cream of Buckwheat? It is gluten free and has a good amount of protein that is easily digested. I use Pocono brand. It is grown and packaged near me and by a company that only grows and packages it so no issues with CC from growing or processing. Also please drop the Cliff bars and go with a snack bar that doesn't contain oats. Simple Mills...
  17. ravenwoodglass
    During the many years it took for me to be diagnosed I found Immodium to be very effective. The caplets are preferable to the liquid IMHO. I took it for years so I could work and take care of my kids. In addition to Scotts advice having a change of clothes can also give some security. How long have you been diagnosed? Are you being CCed a lot? That can make...
  18. ravenwoodglass
    Iwas wondering about the same thing. Here is a link to their page with side effects: https://www.paxlovid.com/side-effects "Other possible side effects include: altered sense of taste diarrhea high blood pressure muscle aches abdominal pain nausea feeling generally unwell These are not all the possible...
  19. ravenwoodglass
    Welcome Erica. I see you have gotten quite a few replies on your other thread from our other great and knowledgeable members. One thing I didn't see mentioned was an evironmental aspect. You mention being a teacher. What ages are you teaching? Younger grades, in particular, may work with art supplies and glues that while non-toxic for them may be a problem...
  20. ravenwoodglass
    It may be the soy in it. I have been looking for a supplement like this without it and haven't found any yet. It took me months after diagnosis to figure out that alot of gluten free products were not 'glutening' me it was the soy in them. Don't know if that is the case for you but thought it worth mentioning.
  21. ravenwoodglass
    In an earlier post you said they will be doing an endo at the same time as the colonoscopy. Is that not the case now? 2 weeks back on gluten is what I understand to be the time for an endo. That may have changed though. You have 3 weeks till your procedure so IMHO you should go back on gluten and insist they do the endo at the same time as the other procedure...
  22. ravenwoodglass
    This is a frustrating situation. I have, until very recently, volunteered at a food pantry and they are quite overwhelmed at this point in time. We have to prepack foods for clients for the sake of speed and I have had to tell folks to just share foods they didn't want with freinds or neighbors. Even though I had a great need myself I didn't use the pantry...
  23. ravenwoodglass
    Since you had positive celiac panel results you could ask the doctor to retest your antibodies in a few months and if symptoms have resolved and antibodies are down that should be enough for a diagnosis. As far as gene testing goes what will you do on the odd chance you carry a celiac gene that wasn't tested for? Would you go back to eating gluten?
  24. ravenwoodglass
    "Ravenwoodglass doesn't have the two most common gene types and too would/could not be confirmed medically." I am officially diagnosed with celiac by a GI doctor. I had both neuro symptoms and DH and daily and nightly D for years. Thankfully my diagnosis came before gene testing was considered the be all and end all of diagnosis. Unfortunately one of...
  25. ravenwoodglass
    I am so sorry that you have been going through this. Do know that a lot of healing is possible but it does take time. My ataxia and aphasia was severe but I have mostly healed and hope you will also. I found a physical therapist to be helpful with balance and coordination. I do still have some difficulty with speech but for the most part I can now hold a...
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