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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Your dentists office should really be doing the checking but... Most of what they use is going to be safe but from what my dentist said the flavorings can be an issue in the numbing gel they use before the injections and in the tooth polish. Since you have a few days before the appointment call the office and get the contact numbers of the stuff he is using...
  2. ravenwoodglass
    Keep a record of symptoms as the other poster stated. In addition if things get bad call the doctor's office and ask to speak with either the doctor or a nurse. They may need to call you back but most will. Then give them all the gory details if you are being woken up at night by the pain and D make sure they know that. Some doctors will advise you to stop...
  3. ravenwoodglass
    I had DH for literally years before my GI issues were anything that wouldn't be considered normal for a kid. I did however have severe joint and muscle pain but doctors attributed it to congenital leg and foot defects. I had surgery but it didn't relieve the pain but did allow me to walk more normally, at least until ataxia set in. I did have C a lot as...
  4. ravenwoodglass
    The two tests I bolded I think are celiac tests and those are both positive. However your doctor should also be doing a double scope on you, both endo and colonoscopy, and do ask that they be done at the same time. You need to have Chrons ruled out along with some other issues. Follow up with your doctor and when all celiac tests are finished do give...
  5. ravenwoodglass
    Unless these are regular glutened symptoms for you it would be a good idea to visit the doctor or even the ER. We tend to forget that not all symptoms are gluten related and you could have something else going on. The not being able to open your eyes and sagging has me a bit concerned. Do give us an update on how you are doing.
  6. ravenwoodglass
    Yes it is quite possible your little one is celiac. You have a great ped to stay on top of this. Since false negatives are quite common in children I would think the positive test is significant. Since celiac can produce many problems not just in growth and tummy issues but also in behavior and learning it is good that this was caught early.
  7. ravenwoodglass
    If you are going to have a scope you really do need to get back on gluten until that is done. If you had positive blood work and you recover on the diet that may be enough for the doctor to give you an 'offical' diagnosis. If you are celiac you do need to let all your first degree relatives know that they should also be tested even if they don't seem to have...
  8. ravenwoodglass
    You have a wise neurologist. It sounds like he might give you an 'official' diagnosis if your symptoms resolve. You could ask for a call back from him to ask him if he will and explain that your family will want one if the diet works. You do sound like one of us and I wish my neuro had been that good. I even had diagnostic brain lesions but mine was still...
  9. ravenwoodglass
    Glad this is working for you. I had to take them myself when my pancreas took a whap from a bad drug reaction and that is what I did. Hopefully soon you will be healed and won't need them any longer but for now they it sounds like they are doing what you need them to.
  10. ravenwoodglass
    Your description sounds very much like DH. If you are getting a skin biopsy make sure the derm is familiar with how to do the biopsy. They need to biopsy intact skin next to an active lesion and they also need to tell the lab that they are looking for DH.
  11. ravenwoodglass
    Can you tell us what you typically eat? We might be able to help you figure out where you are still getting gluten. Also do you eat out frequently? That can be a problem for us as can baking with wheat flours for others or having others bake with flour in our homes. Gluten can be sneaky and I hope we are able to help you figure out where it is sneaking in...
  12. ravenwoodglass
    Do any of those vitamins or supplements contain wheat or barley grass? They can say they are gluten free but many of us do still have a problem with them. Do you use any gluten ingredient containing toiletries? Do any arts and crafts that use products containing gluten?
  13. ravenwoodglass
    It can take some time for panels to come back negative. You say your are going down with each recheck which is good. If your symptoms have resolved it is likely that it is just taking a while for your levels to go down.
  14. ravenwoodglass
    The most obvious symptoms for me were parasthesias which are numbness and tingling in my hands and feet and fatigue. Sublingual B12 helped me a great deal.
  15. ravenwoodglass
    Many doctors think the diet is much harder than it is. Not saying it is easy but it can be done. I never took Dapsone and my DH cleared within a couple months. Do avoid iodine and know that the longer you are gluten free the less antibodies will be lurking in your skin. When I was first diagnosed even small amounts of gluten would produce an outbreak within...
  16. ravenwoodglass
    Since false negatives in children are even higher than in adults you really can't firmly rule out celiac with testing.
  17. ravenwoodglass
    Cream of Wheat, muffins, cake, cookies, gluten cold cereals, pasta, grilled cheese..... Do keep in mind that false negatives are even more common in children than adults and if he does better gluten free that is the important thing.
  18. ravenwoodglass
    You may find after you have healed from the celiac that your recovery process is a bit easier. In your previous surgeries your body had to fight not just to recover from the surgery but also the gluten reaction that was unknowingly going on. I hope things go smoothly for you and that you are quickly feeling better.
  19. ravenwoodglass
    No one is against you. The diet is tough to get used to but we do learn how to cope in time. It isn't fair that we have to jump through so many hoops to keep us safe in this food centric world but we do have to jump them. We just don't want you to miss out on a special event because of the issue of food. You haven't been gluten free very long and may be still...
  20. ravenwoodglass
    I do hope you go and have a good time. I just noticed you joined the forum on the 39th anniversary of my losing my brother. You never know what the future will bring or how long he will be with you. Share in his joy at the event. It will be well worth the inconvience of your having to bring your own food.
  21. ravenwoodglass
    I was very fearful of getting glutened at my DD's wedding even though the caterer said the dinner would be gluten free. I tucked a hot plate and a small pan, a couple cans of Dinty Moore Beef Stew, fruit and nuts and some gluten-free bread and pnut butter in my suitcase. I ate before the event and then ate a plain fruit salad at the reception and had another...
  22. ravenwoodglass
    Some hospitals are good but I wouldn't risk it. Last thing you need is to get glutened after surgery. Have someone bring you food that you know is safe.
  23. ravenwoodglass
    How about Kinnickinnick? Theirs isn't bad.
  24. ravenwoodglass
    It sounds like your body is giving you the answer no matter what the tests results are. You may not have been back on full gluten long enough for a positive on the tests but it sounds like you are going to go back to gluten free when the tests are done. Do be sure to be strict about it when all testing is done. As you are finding out after being gluten free...
  25. ravenwoodglass
    If your going to cook food on a grill that has been used for stuff with gluten do be sure to use foil. Using a glutened grill is enough to give you a reaction. Sorry this happened to you and glad you found something that would help.
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