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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I have high B12 as well, not as high as yours (usually around 900) but it s above normal.... I haven't found a rel reason for it either. I also am hypothyroid and have had positive ANAs, although it as been normal for at least a year. I'm afraid I don't know if the autoimmune problems are related to the high b12.
  2. nvsmom
    The tTG IgA and IgG are pretty specific for celiac disease. The tTG IgA has a specificity of 91-99% as seen here: Open Original Shared Link The The tTG IgG has a specificity of about 95% as seen here: Open Original Shared Link site also shows a higher specificity for the tTG IgA - This means that 5% of positives (or less) are caused by something other than...
  3. nvsmom
    Welcome to the board. I would guess that roughly half of our board members had at least one negative test during their diagnosis, whether it be an endoscopy, tTG IgA, DGP IgG, or EMA IgA....but they (usually) had at least one positive test before being diagnosed as a celiac. Getting negative tests is not that unusual - that's why they run so many types...
  4. nvsmom
    Welcome to the board. I agree that one of the first steps should be testing the rest of the family... Just in case. Re-reading all labels is the next step. Soups, bullion, spices, condiments, sauces (soy, teriyaki, worchestershire) and mixes should be checked for gluten. Baking supplies that could have been contaminated (like a flour covered measuring...
  5. nvsmom
    You're welcome. Yes, you have to be eating gluten for an accurate endoscopic biopsy. Most doctors seem to require a two week gluten challenge prior to testing but some advise eating gluten a month before testing. Talk to your doctor as soon as you can about the biopsy, but I am guessing that you will need to resume eating gluten soon if your test...
  6. nvsmom
    I agree. Ask for these tests: TTG IgA and tTG IgG (most common test) DGP IgA and DGP IgG (these are superior tests for detecting celiac disease in young children) EMA IgA (not as often positive in children as in adults) Total serum IgA (a control test) AGA IgA and AGA IgG (older and less reliable test) Sometimes all blood tests are negative but the...
  7. nvsmom
    My kids were negative on their celiac disease tests too so now that they are gluten-free and feeling better, the improvement is viewed as a "coincidence" by their doctor. NCGI is very real and has basically all the same symptoms as celiac disease except the villi atrophy and the dh rash. Nasty! I hope you feel better soon on the gluten-free diet. And...
  8. nvsmom
    The AGA IgA and AGA IgG can indicate non celiac gluten sensitivity (NCGS) but the tests have a specificity of 80-95% for celiac disease, so chances are good that the positive results are caused by celiac disease and not NCGS. This report is where I found the info (page 12): Open Original Shared Link I agree that if you want to know whether it is celiac...
  9. nvsmom
    Good luck. Don't forget to get your kids tested too. celiac disease runs in families so if you have it, and they are still eating gluten, they should be tested every opulent of years.
  10. nvsmom
    No, he gene tests aren't definitive. We have at least one board member who is DQ2 and 8 negative who also tested positive for celiac disease. Most of us do have the dq 2 and 8 genes, but it's not necessary to develop celiac disease. Celac is genetic though, so the rest of the family might want to get tested as well. A low tTG IgA can indicate, I about...
  11. nvsmom
    Your doctor sounds like she doesn't know what she is talking about. The IgA and IgG are not actually celiac tests. It measures immune response activity in certain areas of the body. The Immunoglobulin A is considered to be a control test for celiacs because 5% of celiacs do not make enough IgA to have accurate celiac tests. The actual celiac tests are...
  12. nvsmom
    Yikes. It does sound like your thyroid made a mess of itself. Your TSH might be fine for you or it might not - it really varies between people. As a very general rule, many people with thyroiditis often find they feel best when their TSH is near a 1. When my TSH is a 2, I personally feel pretty hypo but I now take natural desiccated thyroid (which has a...
  13. nvsmom
    Welcome to the board. Gluten will not affect your blood sugar much. It's technically a protein, and proteins don't spike sugar much. Carbohydrates are the things that affect your blood sugar, and any flour will do it whether it's gluten filled like wheat, and rye, or gluten-free like corn starch, and tapioca starch. I do agree though that if...
  14. nvsmom
    Oh yeah! There is grass! I see grass! Ugly frozen brown grass, but still... LOL
  15. nvsmom
    I agree. You need to get rid of her opportunities to sneak gluten even if it means a gluten-free household. As for her growth, growth hormone s a very poor test to see whether her hormones are slow. GH is released in spurts so depending on when a person is tested, results could be very high, low or normal. A much better test is the insulin like growth...
  16. nvsmom
    I don't feel cured either. I am not back to great health yet, and I honestly doubt I ever will be - too many permanent health problems were created by decades of a missed diagnosis. I may no longer have to carry an extra sweater to hide my bloat after I eat, but my thyroid still doesn't work, I still have an autoimmune blood disease, arthritis is still there...
  17. nvsmom
    Welcome to the board. I certainly sounds like it could be celiac disease. It is good that you were tested. Did they run the full panel? Many doctors just run the tTG IgA and think that is enough. These are the most common tests: TTG IgA and tTG IgG EMA IgA Total serum IgA (a control test) DGP IgA and DGP IgG AGA IgA and AGA IgG (older and...
  18. nvsmom
    Before I quit dairy I used to like to put cottage cheese onto hot, cooked veggies - the cheese would melt and get all gooey... Yum. I know a lot of people eat cottage cheese with fruit but that just seems odd to me. LOL
  19. nvsmom
    My boys looked baffled today when I said they could go outside without snowpants and balaclavas. LOL It's almost 10C!
  20. nvsmom
    Mmmmm. My family might eat cauliflower this way...Thanks!
  21. nvsmom
    I'm sorry you are having such a tough go of it. Your one of the unlucky ones who take longer to heal. Some of us can take years to get better... All you can do is hang in there and wait to turn that corner. Best wishes.
  22. nvsmom
    Pity party is the perfect term for it. LOL I remember commenting to my mother when I was first diagnosed that at least it wasn't diabetes because I'd have a hard time giving up sweets - and now it's both.
  23. nvsmom
    Immunoglobulin A (IgA) is a control test to make sure you make enough IgA for accurate IgA celiac based testing. About 5% of celiacs are deficient in IgA so thier tests are often false negatives. Your IgA looks just fine so your other tests should not be affected. The gliadin IgA deaminated test is the DGP IgA, which is a newer and good celiac test. Yours...
  24. nvsmom
    LOL That was great! But if it was for Calgary, in October the snow would have started falling and the leaves would have frozen onto the tress only to eventually fall off sometime in November on TOP of the snow. And May? there's no guarantee that the snow would be gone, and there would be gravel all over the roads along with the salt - spring is "fix your...
  25. nvsmom
    As far as I know, type two is not considered to be autoimmune in nature, BUT it can be made worse by the inflammation created by autoimmune diseases like celiac disease. Type 1 diabetes is autoimmune and caused by the destruction of parts of the pancreas. Type 2 results from insulin resistance and pancreatic burn-out; it is a result of the types of foods...
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