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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Can you find the Kinnickinnick crusts where you are? They come 4 to a box and you could send a slice with him to school if he tolerates the dairy and tomatoes or with whatever topping he likes. You could get 16 total squares out of a box of 4 if he can't eat a whole pan size pizza by himself.
  2. ravenwoodglass
    I've had pretty good luck with finding contact info for drug companies by putting the company name and the words contact info in a search engine. I try to call instead of emailing as it usually gets a quicker answer. I generally say I am allergic to wheat not gluten intolerant or celiac as wheat starch can be used and some places consider that gluten free...
  3. ravenwoodglass
    Glad to hear you're doing so much better. Do fill your doctors in on what you have learned as many of them are clueless when it comes to DH.
  4. ravenwoodglass
    Talk to your doctor as there may be other meds you can use if they are giving it to you for mood issues. I was on it for atypical seizures. You may find after you have been gluten free for a while that the med also is not needed as celiac can have effects on the brain that lead to anything from mood problems to epilepsy to MS type symptoms and those can...
  5. ravenwoodglass
    Are you being really careful to prevent CC? You need a new toaster for just gluten-free bread, to replace scratched nonstick pans, wooden utensils and strainers. It helps to go with whole unprocessed foods at first and do avoid restaurants. Do not bake with flour for others and if your significant other eats gluten make sure that teeth get brushed well before...
  6. ravenwoodglass
    Keep lots of gluten free snacks on hand, hard boiled eggs, nuts, dried fruits, fresh fruit, veggies cut up and ready to dip in your favorite salad dressing etc. Lots of simple ready to go stuff and keep gluten stuff out of your house or at least out of your sight.
  7. ravenwoodglass
    You might want to write that on your forehead.
  8. ravenwoodglass
    The test your going to have is an endoscopy. You will likely be in what is called a twilight sedation state and you won't feel or remember anything. I hope all goes well and they get you there soon. Do let us know how things turn out and how your doing. Wishing you the best and that you come home safe and sound.
  9. ravenwoodglass
    Not as far as I know. I am not 'allowed' to bring it up because that is 'nagging'. I worry about her but there is nothing I can do. Since the doctor was an expert at a highly regarded hospital his words bear much more weight than I and I doubt he ever saw her records from her home town GI.
  10. ravenwoodglass
    Do stay on gluten until after your tested. I hope they can get to the bottom of this soon. Be sure to let them know you have celiac in your family as it is a genetic disease. As a parent of a young man who was in the Army before diagnosis I know how hard things must be for you. He had extreme problems just on routine manuvers and I can't imagine what it must...
  11. ravenwoodglass
    That's great news. Glad it got straighted out and hope things are going well soon.
  12. ravenwoodglass
    Whew, glad to hear that. Do be sure to have them do rechecks on your liver panels frequently. I don't know what liver issues you have but many of us to have liver panels that are off when we are diagnosed that resolve with no meds after we have been gluten free for a while. I had a problem finding fish oil tabs that were soy free. I don't know if you have...
  13. ravenwoodglass
    Perhaps you could do a search of the NIH website. They advise that all type 1's be tested for celiac since it has been found that Type 1 diabetics have a higher tendency to develop it. Sorry I don't have a link. Later today I will try to find some links for you.
  14. ravenwoodglass
    Be aware that soy and casien intolerance will not show up in allergy panels as they are not allergies. If you consume either of them drop them out of your diet for a bit and then challenge them. It may not be the case for you but soy does to me what you describe and it took me a long time to figure out I had an issue with it and it was in a lot of the gluten...
  15. ravenwoodglass
    The reason it didn't go well is because you could have sued her for malpractice if you chose to and you would have won. Glad you found a new doctor and finally got those referrals. My ex-GI and GP were not angry when I finally got my diagnosis they apologized so many times it was ridiculus and they never refused to order a test I asked for afterwards. They...
  16. ravenwoodglass
    17 different scripts a day! Yea I would be reluctant to add another into the mix also. Do have your doctor review all of the meds and make sure that your mood issues aren't being caused by a reaction to the mixture. Many drugs can have side effects that can cause irritability and other problems.
  17. ravenwoodglass
    I agree that is quite alarming if you have been strictly gluten-free for a couple years. I with I had some answers for you and hope your doctor can figure things out for you soon. It must be very frustrating for you. How are you feeling? Could you maybe have another intolerance like perhaps soy or casien that is keeping you from healing?
  18. ravenwoodglass
    I voluteer at a food bank and it would be VERY appretiated. You should see the kids light up when we have some candy or other treat to give them. For those that can afford to do that it is a great way to deal with the issue.
  19. ravenwoodglass
    I'm not against the Scouts or the dues but $25 in one pop would be too much for many families. When I was in Scouts we paid a very small amount weekly and perhaps your troop would allow something like that for some of the kids, I don't know. I am strongly against the schools that punish the kids for not selling by banning them from a school function though...
  20. ravenwoodglass
    No reason why you shouldn't. I just fear folks doing the same thing my DD did if they don't have one of those two genes. Gene testing can be a valid part of the diagnostic process and it is interesting to see which genes you do carry.
  21. ravenwoodglass
    Just my opinion but I think that is disgusting. As a single parent supporting two kids on a minimum wage job $25 was more than half my weekly grocery budget when my kids were growing up. I enjoyed selling stuff like Girl Scout Cookies etc when I was a kid. With my kids I never even heard of the sales because they didn't want to do them and wouldn't tell...
  22. ravenwoodglass
    Myself and my children are of this group. I carry a double DQ9 so each child has at least one copy of that gene. Because my DD doesn't have DQ2 or DQ8 her present doctor told her that her positive blood test and biopsy were wrong and she never had and never will have celiac. All her celiac related issues are now considered stress related. There is much still...
  23. ravenwoodglass
    Yea I agree with a big sign on the door. Kids are selling pizza door to door! EWWWWWWWW. There are times also when kids will be selling stuff and saying it is for their school when the money really is going in their pockets. I donate enough to the schools in the form of my extremely high taxes and if I want to give more I will give it to the school directly...
  24. ravenwoodglass
    Personally I never assume something is safe because my reactions are too severe. If I doubt I call the companies 800 number or will do a search for the companies product labeling practices. Some companies are very good at labeling all gluten ingredients and with them I know that there is nothing hidden in natural flavors. Kraft and Unilever are two examples...
  25. ravenwoodglass
    Also make sure they take multiple biopsies, I think 6 to 8 are advised not the one or two that some doctors do. And they should come from different areas of the small intestine.
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