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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Since we have to heavily gluten load for at least a couple of months for tests to have a chance to be positive after we have been gluten free, and some of us test negative even on a full gluten diet before diagnosis then I do think that you could be getting CC'd and still have normal blood tests.
  2. ravenwoodglass
    Actually for the antibodies to be activated the gluten only needs to contact a mucous membrane. If you made your husbands sandwich and then ate a gluten free one or rubbed your nose or eyes you would activate the antibodies. Making that sandwich is also surface contact, which you are avoiding problems with by washing your hands to prevent CC.
  3. ravenwoodglass
    Have you eliminated iodine from your foods and supplements? We need to as iodine will keep the antibodies active. Personally I would do that first and also make sure that gluten ingredients are eliminated from all personal care products. It can take some time for the antibodies to leave the skin and even a tiny amount will reactivate them so do be very strict...
  4. ravenwoodglass
    Sorry to hear your family got such bad news. I hope they caught it early and that he recovers. Thank you for the update. It may help others who are struggling with the need to be as strict as possible with the diet.
  5. ravenwoodglass
    Go ahead and stick with the diet being aware it can take a bit of time to heal. Not all of us have candida issues and even if you do that doesn't mean you would be able to add gluten back in if you are gluten intolerant or celiac. Going with a whole food diet is the quickest way to heal as there is less risk of cross contamination that way.
  6. ravenwoodglass
    If you feel you need a doctors diagnosis you really need to stay on gluten, even then you may still have a false negative. Do be sure to tell the doctor your father is diagnosed and the results of the elimination and reactions to adding it back in.
  7. ravenwoodglass
    Just keep in mind you could still have a false negative. Go with what your body is telling you if that happens.
  8. ravenwoodglass
    I have a problem with soy in some vitamins that are gluten free. I started taking one for my hair and nails to help with hair loss that said gluten free. They really didn't seem to help at all. The new label on the vitamin stated it contained soy and I had missed that. I now take almost all NOW brand and Nature Made for Cod Liver Oil (that was the only one...
  9. ravenwoodglass
    Since my doctor had me do an elimination then referred me to the GI doctor for an endo my GI doctor had me do a second challenge. The second challenge made me extremely ill with bad GI bleeding so I was diagnosed at that point. I did have an endo to check and make sure I was fully healed a couple of years later. If you have positive blood work it is up...
  10. ravenwoodglass
    I am one of the 20 to 30% that show a false negative on testing and it delayed my diagnosis by many painful years because no doctor told me to try the diet. Once you are done with testing do give the diet a shot. It won't hurt and it may be the answer to your issues. Do be strict and give it a bit of time.
  11. ravenwoodglass
    It should work. I like to use the Tom Sawyer brand for stuff like scalloped potatoes and I use a mix of that and parmesan cheese to coat stuff like chicken. I also use the Pamela's mix for sweets and quick breads but never tried it for thickening other than stuff like pie fillings. Another thing that works okay is cornstarch for some stuff.
  12. ravenwoodglass
    I wouldn't wait to long before getting that blood work done. I know you must be really stressed out but you will do better on those finals if your health isn't compromised. Is there anything you are eating that you weren't before you got so busy? Like are you eating at the school cafe more often, grabbing coffee at a coffee shop, added any supplements that...
  13. ravenwoodglass
    Can you add in some veggies that you tolerate? You may want to add some sweet potatoes, you can eat those a variety of ways like cutting them into fry shapes and baking with a bit of oil or zap or bake and put a bit of brown sugar on them. It can be hard to deal with cravings at first, I didn't see chocolate on the list perhaps a bit of dark chocolate might...
  14. ravenwoodglass
    Me too. If you can find an allergist who will help you with one that can be helpful. Not all allergists will so do ask before making an appointment.
  15. ravenwoodglass
    Glad your doctor was able to get you in. Sometimes the doctors with the worst bedside manners are the best at figuring out what is going on. Hopefully that will be the case for you. I do hope you are feeling alot better soon.
  16. ravenwoodglass
    I don't think allergy meds would affect a celiac screening since celiac and gluten intolerance are not allergies. It might be helpful to post the results of the tests with their reference ranges. Some doctors will call a low positive a negative. That said false negatives on both blood tests and biopsies are not uncommon. When your done with all celiac related...
  17. ravenwoodglass
    False positives on blood tests are practically unheard of. False negatives on biopsy and blood tests are fairly common though. If you have been gluten light that wouldn't stop the antibodies which is why your test was more strongly positive the second time around. No matter what the biopsy results are it would be a good idea to go strictly gluten free after...
  18. ravenwoodglass
    You do sound like you could be one of us. After you are done with testing do a strict trial of the diet for a couple of months no matter what the test results are as false negatives are not uncommon. It is also not unusual for us to see an increase in symptoms after we have a child. I know how hard it is to care for our families when we are so ill and I...
  19. ravenwoodglass
    What you may be seeing is mucous. Our intestines will produce it to try and protect it from the irritant. I also used to have a lot of kidney issues pregluten free with pain along with protein and blood in my urine. That has resolved gluten free but still occurs when glutened. Do mention it to your doctor to make sure nothing else needs to be ruled out.
  20. ravenwoodglass
    It would be a better idea to try making coffee at home. That way you eliminate any possible issues with cross contamination.
  21. ravenwoodglass
    EE is not an uncommon finding in us. Have you tried him on the gluten free diet? False negatives with children are even higher than they are in adults. IMHO it would be a good idea to do a good strict trial of the diet with him to see if it helps his issues. Also please note that if they are only testing for DQ2 and DQ8 as far as genes go then someone can...
  22. ravenwoodglass
    Are you doing a challenge or an elimination? A challenge is when you have been gluten free for long enough to see some improvement and then eat gluten again to see if you react. If you are doing an elimination to see if it helps do read as much as you can here to learn what we need to do to remove gluten cross contamination risks and go with as much whole...
  23. ravenwoodglass
    The equivalent of 3 to 4 slices of bread for about 3 months is what the general guidelines are. You can still have a false negative though even after the challenge. If you have been gluten free, are feeling better and symptoms return with the challenge then your body is giving you the answer though.
  24. ravenwoodglass
    It is hard to believe that such a tiny amount of gluten can still cause problems. When I was first diagnosed I ignored stuff like gluten ingredients in toiletries and although I did get a new toaster and replaced scratched pans and my strainer I still would have issues. At first I just couldn't believe that the small amount of gluten reside in lotions and...
  25. ravenwoodglass
    Since your daughter also has similiar symptoms do be sure to do a trial of the diet for her also after all the testing is done. False negatives are not uncommon on testing and are even more common for children. Symptoms can be sporatic GI wise for years before they become a relentless issue. So only off and on IBS type symptoms is not uncommon.
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