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ravenwoodglass

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Everything posted by ravenwoodglass

  1. Welcome to the board. You do sound like your in the right place. Have you had blood testings again since you were 18? If not it might be a good idea to get another full panel run since just cause you were negative then doesn't mean you will be now. Many get a lot of relief of depression and anxiety on the diet so hopefully it will help you also. You will...
  2. Thanks for posting. Hopefully this information is read by all GI doctors. I really feel for the unfortunate folks that have a false negative on biopsies and are told to just keep eating gluten. At least my new GI tells anyone who is symptomatic to try the diet strictly even if both blood and biopsy are negative. Wish there were more like him and that I had...
  3. I think the sticker idea is a great one both for her and for her Dad. Keeping a supply of safe 'snack bags' may help also for when they are out and about and she needs something to eat so there isn't a temptation for a drive-thru. Dad also needs to know that with celiac there isn't always an instant reaction. He may not associate the problems she has two...
  4. You do sound like you are in the right place. Is there any way you can get tested before you begin the diet? If you start the diet it will be hard to get a diagnosis without making yourself very ill if you later decide you want an official diagnosis. I can't answer for all but for me the diet did take care of my need for all the many meds I was on prediagnosis...
  5. Most bars that are not in a restaurant hand wash the glasses. Many that I have worked at used the 3 well system, a wash tub with soap, a rinse well with water, then a well with a sani-tab that is not then rinsed off. I always ask them to re-rinse the glass in those cases. So long story short, I think CC might be an issue.
  6. This was my experience also until the symptoms became a steadily increasing torture when I was in my thirties. I was triggered at around 4 or 5 years when I developed severe DH but I had C since as long as my Mom could remember.
  7. This happens to me too and it's scarey. I now know it will last about 24 hours for me and that it is directly because of gluten. I know I will be a bit irrational, snappy and easier to anger at the same time so I avoid confrontational situations if at all possible. I will do something relaxing like reading a funny book, watching sitcoms, a bath etc and take...
  8. Welcome to the board. You have found a great place for info and support. It is hard at first but the trouble will be worth it in the end. Your hubby may become more supportive once he sees how much better you feel. That can take some time and do keep in mind that some of us will go through a withdrawl for a short time so if you get a bit more moody that will...
  9. Welcome to the board. Are you being strict with the gluten free diet and avoiding iodine? While DH doesn't need iodine to flare iodine will keep the antibodies in the skin and increase the intensitiy of a gluten reaction. Go with as much whole food as you can and be really strict with food, preperation and toiletries and the DH will go away but it does...
  10. Thanks. It was a nice day and I hope everyone else's was too.
  11. If they would only listen.......
  12. Teach me to post in a hurry , your quite right it is not limited to just extremeties. I also had a lot of other areas that were impacted by nerve damage including having difficulty swallowing. I did have the pins and needles in the extremeities first but not everyone would.
  13. Having an allergy to something is not the same as an intolerance. An intolerance to dairy would not show up on a scratch test the same as gluten intolerance won't. Deleting dairy hopefully will help with the pain. It is good that you have a new doctor and if things don't improve hopefully he will have some ideas. It can be hard to find a soy and casien...
  14. I think this is unlikely to be nerve pain from low B12 levels. Usually that presents first as a tingling sort of sensation in the hands and feet and that can progress up the arms and legs. It can also cause a burning sensation or numbness in the extremeties. In addition to the soy I mentioned in the other post have you also tried eliminating dairy, especially...
  15. Are you eating soy? I ask because soy is a direct cause of that type of pain for me. The Xanax your taking is it name brand or generic (alprazolam)? My doctor called the maker with me sitting there and was told the name brand is not gluten free but the generic made by Sandoz is.
  16. If it wasn't happening a month ago look back at anything you have added in the last month including supplements. Anything that is new drop and see if the problem resolves. If it resolves then add back in the new items, food and supplements one at a time for a week and see if any of them cause a reoccurance of the issues.
  17. There are conditions other than celiac that can cause you to stop being able to digest food. You mention you have Chrons, are you talking to your doctor about this? If you are unable to digest virtually any food you could have something really serious going on so I hope you are keeping your doctor on top of things.
  18. I think it is more likely that you are still getting over the glutening. It can take some time for things to calm down after being glutened. If it should happen again if you can take Pepto Bismal liquid for the stomach pain that might help more than an antiacid. I hope you are feeling better soon.
  19. Have you been diagnosed or are you trying gluten-free to see if it helps? If you haven't been tested yet you may want to go get tested after adding gluten back in for a little bit. If you go gluten free without testing and later decide you need a diagnosis you will have to do a lengthy challenge and even on a full gluten diet false negatives are not uncommon...
  20. Hey ravenwood... hope you and your new little buddy have a great Thanksgiving...

    Hope your well!!!you take care and I'll see ya around the web!!! LOL

  21. I hope you can get your sister to read some of the info. My neuro was clueless also but instead of saying it was probable MS said it was all in my head and the UBO's were meaningless. "Here's a script for Prozac" If you are a diagnosed celiac your sister should already have been tested by her GP as all first degree relatives are supposed to be tested even...
  22. Do try eliminating the soy and dairy as that may help a great deal. I also thought I should mention that wonky liver enzyme panels are really common for us and usually will normalize after time. Is there anything he knows he tolerates well? Even if it is just a piece of fruit and a few Snyders pretzels it can help him get over the fear of eating outside...
  23. He may be board certified in both areas but it doesn't sound like he is proficient in either. If your husband isn't angry with your treatment IMHO he should be. Switching to another is going to be a good idea. You shouldn't have to have an excuse to do so but if you do use whatever reason works for you as this doctor sure doesn't. Be sure to tell your new...
  24. Sounds like the doctor was not the greatest. Hopefully you don't still see him and have told him why. If the diet is helping you that is the most important thing though in the long run. Since false negatives on both blood and biopsy are all too common even if he ran the tests he was supposed to you still might not have gotten the answer that just doing the...
  25. I will be watching for you in the parade. That sounds like fun as long as the weather is good. My day will be quiet. I'll do a dinner for me and my fur family and look forward to phone calls from out of state kids. Glad they are going to be celebrating together and while I will miss them I don't miss all the days of preperation and work for holiday dinners...
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