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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Welcome. I am sorry to say that you really do need to keep on gluten until your biopsy. Just a slice of bread or a few crackers would be enough. You could try calling the GI office and asking for the doctor to call you back. Explain that you went gluten free for a week and what happened when you added it back in. A few doctors will diagnose based on...
  2. ravenwoodglass
    Test in October and a letter in January? Sounds like either the results or the letter got tucked under some papers or the doc had a real long holiday vacation. Good that they are getting you in quickly. Since you had positive blood work and are having the endo done tomorrow you should be able to go ahead and go gluten free after the procedure if the doc...
  3. ravenwoodglass
    Brain 'wear and tear' huh so what did he attribute your neuro symptoms to? Mine told me I wanted to be sick so here's a Prozac. Do make that appointment with the GI and keep eating gluten until your testing is finished. By the way there is a gene that has been newly recognized as a celiac associated gene, DQ9, (I have 2 copies of it) that in the...
  4. ravenwoodglass
    It is not uncommon for folks with celiac to have nasty problems with dairy until they heal. The tips of the villi create the enzyme that helps us digest dairy and when celiac damages those tips dairy will cause issues. Many are able to add dairy back in after they heal. I was happy to be one of those. there are some, however that react to the protein (casien...
  5. ravenwoodglass
    Welcome. Not everyone shows positive on all the tests in the celiac panel. It is quite significant (IMHO) that you did have a positive result anti gliadan test. Can you, or have you, seen a GI doctor? If you haven't since you got the celiac blood results it might be a good idea. When you do make sure you bring copies of that blood work with you. Then after...
  6. ravenwoodglass
    If your boyfriend would leave you just because you have celiac he isn't worth keeping, IMHO. Hopefully you were kidding. If you are going to get tested for celiac you need to go back on gluten for about 3 months. That should make things easier short term with your boyfriend. You have to be eating gluten for the antibodies to form that they will be looking...
  7. ravenwoodglass
    The doctor may give you a diagnosis after your symptoms resolve and your antibodies go down. Celiac savvy doctors know that damage can be patchy and be missed. That may have happened with you. Being gluten free isn't going to impact testing for other issues and since your appointment is over a month away you may find being gluten free resolves those issues...
  8. ravenwoodglass
    Since you had positive blood work and genetic testing a good strict trial of the diet is in order. If memory serves that test is specific to celiac. Perhaps talk to the doctor about retesting your antibodies in 6 months to see if they go down on the diet and your symptoms improve.
  9. ravenwoodglass
    I had severe ataxia before diagnosis. For me the balance issues felt like I was walking on a ship in rough seas. Ataxia started in early childhood but my problems with walking as a child were attributed to some congenital malformations that were corrected. Turned out that wasn't the case. I was undiagnosed for over 40 years and eventually I also had trouble...
  10. ravenwoodglass
    Dharwood you had positive blood work, positive gene test and are seeing improvement on the diet. After 2 months your antibody levels had gone down from being gluten free. You really are diagnosed. Your body has shown you that by the antibody drop.
  11. ravenwoodglass
    I amgoing to second all that GFinDC stated. You can heal but you MUST go gluten free. I was undiagnosed for well over 40 years and was severely impacted and I healed. If you don't go gluten free you may find more and more of your bodies systems being impacted. Please do read the Newbie thread as there is a lot we have to do to stay safe. Ask any questions...
  12. ravenwoodglass
    The test I bolded is the total IGA. That test is to make sure that she makes enough IGA for IGA testing to be accurate. The TRANSGLUTAMINASE IGA is the test to check for celiac, hers was positive.
  13. ravenwoodglass
    No GFinDC was talking about the total IGA not the TTG IGA. Your daughters test was positive so it is likely she does have celiac. You say she has no symptoms but celiac has over 200 symptoms and not everyone gets the tummy issues that are severe in the beginning. She really should have the biopsy done if possible. If not then a trial of the diet is in order...
  14. ravenwoodglass
    If you have DH you have celiac. Did your doctor run liver panels before he prescribed? He need to and he also needs to check liver function periodically while you are on the drug if you choose to take it. Are you gluten free? If you are not you need to be. If your doctor has told you to take Dapsone and not go gluten free you need a different doctor...
  15. ravenwoodglass
    Forgot to add that I was thought to have MS for a while and it turned out to be the gluten ataxia that cyclinglady mentioned. I was really severly impacted with difficulty with walking, speech, and toward the end even swallowing. I did heal but it took some time. Did they do a spinal tap with you to confirm the diagnosis or were they going off the lesions...
  16. ravenwoodglass
    Welcome to the board. Cooking oils are fine. Some of the spray on ones may not be. I seem to remember there being one that had wheat in it for baking. Not sure though as I haven't used a 'Pam' type product in years. Just read the label. As far as fried foods go, french fries in particular, many restaurants use the same oil for gluten stuff like onion...
  17. ravenwoodglass
    I haven't seen this cereal in a long time so you may want to email the company to see if they still make it. Also the first 4 questions you list should not be needed for your survey. You may get more response if you remove them. Giving that much info could make people fearful of identily theft.
  18. ravenwoodglass
    The doctor wouldn't be able to test for celiac because you are already gluten free. You would need to do a gluten challenge before testing. They would be able to check you for other problems though. When you are at school are you eating in a school cafe or can you cook for yourself? Some schools and restaurants have a good handle on gluten free but...
  19. ravenwoodglass
    No one can say if you will be able to successfully reintroduce dairy. Many of us can but there are some that can't. That is a lot of weight for you to have lost. Considering that you are still having a lot of problems are you talking to your doctor about them? It would be a good idea to make sure you don't have something going on in addition to the...
  20. ravenwoodglass
    Welcome to the board. Can't say for sure without the reference ranges but it looks like your DGP IGA is positive. You do need to keep eating gluten until after you see the GI and get the endoscopy done. If you stop eating it now you would risk a good chance at a false negative with any celiac testing the GI may want to do. You don't have to eat a lot of gluten...
  21. ravenwoodglass
    Some folks have an issue with casien (milk protein) rather than lactose (milk sugar). Lactaid replaces an enzyme that the celiac damaged villi can't produce until we have healed but if your issue is milk protein then lactaid wouldn't help. You may want to drop dairy, even the stuff that says lactose free, for while and see if it helps then when you...
  22. ravenwoodglass
    Are you eating mostly whole unprocessed foods? If you are consuming processed gluten free baked goods check ingredients for stuff you might not have eaten before diagnosis. I didn't know my system didn't like lupine flour (for example) as nothing I ate prediagnosis had lupine flour. Also be wary of even certified gluten free oats. There are celiacs who don...
  23. ravenwoodglass
    TB, The DGP tests are actually quite specific to Celiac. Please if you have found peer reviewed research showing that parasites can elevate those tests please post links. If you never had an endoscopy how exactly were you diagnosed with celiac? And how did you find out you had a tapeworm? A tapeworm would be visible during a colonoscopy as would other...
  24. ravenwoodglass
    A lot of what you have listed here I could have written myself when I was first diagnosed, and more. Don't lose hope as much of that list may be crossed off after you have healed. Unfortunately that can take some time. Do be sure to check out the Newbie 101 thread at the top of the Coping section it will have a lot of good information for you. Do ask any...
  25. ravenwoodglass
    I thankfully didn't have a preforation but shortly before diagnosis I had a colonoscopy. It was set up by my GP on an emergency basis for the next day. Met the GI minutes before procedure. The doctor said I had the most extensive diverticuli that he had ever seen. My entire large intestine was involved when it usually just effects the left descending. Interestingly...
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