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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    False negatives are unfortunately really pretty common. If he is gluten light that almost insures a false negative. Genetic tests can be more confusing than helpful if they only check for the 2 most common celiac associated genes. Plus people can have those genes and never get celiac and folks can be celiac and not have those genes. What you can do is put...
  2. ravenwoodglass
    My DD's college accomodated her 'must live on campus first year' by putting her in senior dorms so she would have a small kitchenette in her room. They also gave her a single room with no roommates to worry about. She got an off campus apartment the next year. The school also reimbursed us for the meal plan charge. The school just didn't think they could...
  3. ravenwoodglass
    While they may be able to "accelerate the degradation of gluten in the digestive system" the antibody autoimmune action actually begins in the mucous membranes of the mouth when we eat something. I don't know if it would ease some of the digestive symptoms but I am quite certain it would not prevent that antibody attack. Since that attack can affect pretty...
  4. ravenwoodglass
    If you put the name of the candy or maker that you want to know about into a search engine with the words gluten free many times the companies gluten free listing will be easily found. Be sure to read the entire page as some companies will have large lists and then at the bottom will mention CC risks. Lists are nice but they are out of date the minute they...
  5. ravenwoodglass
    You need nutrition. Starting out with rice and water is going to provide very little nutrition so perhaps add some fresh cooked veggies and some sweet potatoes to that. On the med bottle for the migraine meds look for the makers name, it usually is in very small letters on the label. Then call the maker. You can get their contact numbers by putting the...
  6. ravenwoodglass
    I agree with Roda, get your own stuff and keep it under lock and key. If your Mom will let you put a small padlock on a cupboard and let you put a small dorm size fridge in your room that is most likely your best recourse if moving is not possible. Since having only one celiac in a family seems to be rather rare your sister may have some payback coming...
  7. ravenwoodglass
    You are right about the need to avoid iodine at first for the antibodies to leave the skin. The iodine keeps the antibodies active when we are first healing however it can be added back in once being glutened no longer produces a severe rash. You don't need both iodine and gluten to flare, gluten alone will cause a flare. After the antibodies have left the...
  8. ravenwoodglass
    Most sausages are gluten free. Perhaps there are some with gluten but I don't know of any offhand. The problem was more likely, IMHO cross contamination from the grill. Many places cook eggs, pancakes, french toast, bacon and sausage all on the same grill. Even though the grill is usually scraped that would not be enough to prevent CC. It is best if we ask...
  9. ravenwoodglass
    I have never heard of a doctor doing a biopsy of the small intestine with a colonoscopy. Since you say you had both scopes done at the same time I suspect the biopsies were taken during the endo not the colonoscopy.
  10. ravenwoodglass
    It sounds like you may also have an allergy to wheat. If the wheezing gets really bad or you start to have trouble breathing get yourself to the hospital quickly. Some of us do have a true allergy to wheat as well as celiac.
  11. ravenwoodglass
    If you have been gluten free for 3 months 2 weeks with a tiny bit of gluten will likely not be enough to insure a positive biopsy. Normally the advised amount is 3 to 4 slices of bread for about 3 months. If you have gotten relief from the diet and end up getting very sick from the reintroduction of gluten you do have your answer. False positives on blood...
  12. ravenwoodglass
    It there a way you can see the doctor instead of the PA? An iron infusion is really going to be much more helpful. If the Integra is in pill form chances are you are not absorbing it or the vitamins that go with it. The sublingual B12 will bypass the damaged gut by being absorbed by the mucous membranes in your mouth so it is going to be a good idea to try...
  13. ravenwoodglass
    Celiac disease can develop at any point in someones life. The important test is the most recent one. If you are not going to have an endoscopy then do go ahead and start the diet. Be aware that damage can be patchy so even if you do have the endo and the results of the biopsies are negative the positive blood test trumps any possible negative biopsy results...
  14. ravenwoodglass
    I'm sorry you are feeling so awful. If you are sure that you have nothing that could be glutening you it sounds like it is time to visit the doctor and get things checked out just to be on the safe side. Hope your feeling better soon.
  15. ravenwoodglass
    Are you taking sublingual B12? If not you might want to even if your blood tests for B12 are showing in the normal range. It can take awhile after we stop being able to utilize B12 from our diet for the levels to drop in the blood. Looking at previous B12 levels from older tests can be helpful in seeing the drop if you have them to look at. Open Original...
  16. ravenwoodglass
    Go with whole foods for a bit as that will cut down on CC risk. Make sure you have made your home as gluten-free safe as is possible. New toaster, seperate condiments etc. If you take any script meds do check with the maker to be sure they are safe. As to the Xanax, the name brand is not gluten free but the generic, alprazolam is safe. The vitamins can be...
  17. ravenwoodglass
    Yes it can progress. I am a case in point. I have been celiac since childhood when I developed DH. Neuro issues came next and then fatigue and arthritis and eventually the intestinal issues became more prominent. When most folks think of asymptomatic celiac they are talking about celiac without severe gut issues but even without the gut issues other organs...
  18. ravenwoodglass
    Since false negatives are all too common when you are done with all testing do give the diet a good strict try. He may find a great deal of relief once he is gluten free despite the negative blood tests.
  19. ravenwoodglass
    Please be on the look out for an increase in his symptoms if he is going back on gluten. It is quite possible, since he did get some relief from symptoms, that he had both celiac and an inflamed appendix. Having an inflamed appendix wouldn't cause him to be 'borderline' positive on celiac testing.
  20. ravenwoodglass
    You may want to take a sublingual B12 along with a good high level B complex and see if that helps. Just make sure they are gluten free.
  21. ravenwoodglass
    3 to 4 slices of bread or the equivalent for about 3 months is what is usually advised. Be aware that even with the challenge you could still have a false negative on testing. If the challenge makes you ill then that is pretty diagnostic in itself.
  22. ravenwoodglass
    The Deamidated Gliadin Abs is the newest and best test for celiac. With your results being as high as they are it is pretty likely, from what I understand, that you are in the right place. This is not as bad a news as you might think as the diet will likely relieve a lot of the issues you are having. The diet can be a bit daunting at first but it is very...
  23. ravenwoodglass
    There are a few other tests that they should have run, maybe they aren't back yet. If you plan on any other testing for celiac, more blood tests or the biopsy then don't go gluten free yet. If you are done with testing a strict trial of the diet is always in order no matter what the test results are because of the high rate of false negatives.
  24. ravenwoodglass
    Agreed. I use many of these products on a daily basis and have never had a problem.
  25. ravenwoodglass
    The ridges can be due to nutritional deficiencies. In some folks they will go away once they are absorbing nutrients again. In my case they haven't even after almost ten years gluten-free. My grandmother may have been Native American, no way to know for sure just going off what my Dad always said. I am curious as to why you say it may be because of Native...
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