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nvsmom

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Everything posted by nvsmom

  1. nvsmom
    I was wondering if you are sure the pizza was safe? I won't order a gluten-free pizza from any place that makes regular pizza because I can't imagine them being careful enough to eliminate the risk of cc. Cooking or prep surfaces have to be separate or cleaned well before use. I worry about flour settling onto my food... stuff like that. Could it have been...
  2. nvsmom
    I too would get tested before you go gluten-free because if you decide, at a later date, that you would like to know whether you have NCGI or celiac disease, you will need an 8-12 week gluten challenge of 1-2 slices of bread per day - that's two to three months of feeling poorly. Yuck! It might be wiser to resume gluten for a week or and then get tested...
  3. nvsmom
    Welcome to the board. You asked: Can she still be celiac with a neg test? Yes. False negative results are more common in babies and toddlers than in adluts. To help avoid false negative, doctors will do many tests like DGP IgA and IgG, tTG IgA and IgG, EMA IgA, and sometimes AGA IgA and IgG. You would want the control test of total serum IgA run as...
  4. nvsmom
    Happy Birthday.
  5. nvsmom
    It's been snowing off and on this past week but it stopped snowing two days ago so my boys were able to do their Easter egg hunt outside. It got up to about 12C today... not bad. Our snowman is standing on just grass now. LOL We have crocuses blooming now, and tulips are poking their heads out of the ground... spring will come one day. Hopefully.
  6. nvsmom
    Don't you wish healing would be instantaneous like every seems to think it should be? There are a few things you could check. Like Lisa said, a bone density scan can be helpful for some if their disease affected their bones. Nutrient testing can help you pi-point what areas will need some help until you are better. Calcium, magnesium, iron, ferritin...
  7. nvsmom
    If the biopsy will help you stay gluten-free, and take eating gluten-free seriously, and you would like to know how damagaed your intestines are (for possible future reference) then I say get the biopsy done. If you are satisfied with a celiac disease diagnosis based on the tTG IgA and EMA IgA results, then I think you would do fine skipping the biopsy.....
  8. nvsmom
    It could be celiac disease so you may as well get checked, just so you know. The best celiac disease tests are: tTG IgA and tTG IgG DGP IgA and DGP IgG EMA IgA total serum IgA (a control test) AGA IgA and AGA IgG (older and less reliable test) Keep eating gluten (equivalent to 1-2 slices of bread per day) until testing is complete. This report...
  9. nvsmom
    I agree that it is a good idea to test her now while she still has adequate amounts of gluten in her diet for testing. You are correct that some young kids may get a false negative test, but most kids test fairly accurately . If she does have a negative test, you should retest her every year or two anyways as celiac can develop at anytime in life, or...
  10. nvsmom
    That reticulin test you had done is one of the oldest tests. It's not used often anymore because other better tests came out. Your positive anti-gliadin IgA antibody test (AGA IgA) is also and older test and not that reliable, but it caught you! I agree that your result is quite positive - you are close to double the normal upper limit. That test...
  11. nvsmom
    The barbecue grill could do it too.
  12. nvsmom
    It's best to assume she is extremely sensitive. Celiacs can be set back with just a crumb of gluten; what REALLY varies is how we react to that crumb - one celiac might get a head ache and inflammation while another gets a rash, bloating, mood swings, fatigue and ataxia. A celiac must stay 100% gluten-free even if there are no obvious symptoms or they...
  13. nvsmom
    Ouch. I have back issues too. It can make things difficult. Your numbers have improved nicely. I agree with Lisa that I bet they will keep coming down as time goes by. Some of us just take longer - I was almost down to normal at just over one year gluten-free... Almost. LOL I do have one of the other possible causes of a slightly elevated tTG IgA though...
  14. nvsmom
    Your trying FODMAP too? That looks like a tough one to get straight. I believe going FODMAP allows some wheat where as a NCGI must go 100% gluten-free to notice benefits. Open Original Shared Link Have you been diagnosed with NCGI or celiac disease yet?
  15. nvsmom
    Cholesterol highes and lows seem common in celiacs. The system wide inflammation can help raise cholesterol, and then some of us have too low cholesterol (I'm guessing from issues with absorbing fats). I'm glad your HDL is looking good. Many celiacs find the LDL comes down as they cut many grains (and the sugar it creates) from their diet. Sublingual...
  16. nvsmom
    Non-celiac gluten intolerance (NCGI) is not actually an allergy (similar idea though). NCGI is thought by some to be a type of immune response, similar to celiac disease, but not much is known yet. We do know that NCGI causes pretty much the same symptoms that celiac disease does but minus the villi damage and/or dh skin rash. Sufferers of NCGI could experience...
  17. nvsmom
    I think that all sounds really good except I don't see the need to leave a set of dedicated kitchen utensils at her home. As long as utensils have been cleaned, there should be no issue at all. If you are worried that she can't safely prepare food for you, it might be best just to bring your own food, or be there when she prepares the food so you can protect...
  18. nvsmom
    From what I have seen on this board, the "strength" of the positive test does not always directly correlate to the amount of damage found in the intestines. There are numerous people around here who had weak positives but extensive damage to their villi found during the endoscopic biopsy. The same thing is sometimes true of some people with negative blood...
  19. nvsmom
    I've read 8-12 weeks is your best bet for an accurate test. Longer is better as the antibody levels change at different speeds for different people. For instance, my tTG IgA was ALMOST normal after over a year gluten-free. When you do get tested, make sure you get the DGP IgA and IGG, and tTG IgA and IgG done. Those two are the best for kids.
  20. nvsmom
    I think both doctors have it a bit wrong. IgE testing is for allergies but I don't believe that there is an allergy to gluten. People may be allergic to wheat or barley, but I have never heard of a gluten allergy. Celiac disease is an autoimmune disease that is detected in the IgA or IgG immune responses. I have seen celiacs who have an IgA or IgG...
  21. nvsmom
    Those tests look fine to me too. You should ask your doctor for a few more tests though, or at least one - the total serum IgA. About 5% of celiacs are deficient in IgA which will result in all IgA based tests (like AGA IgA and tTG IgA) having a false negative. It's an important control test to have done. The AGA tests you had done are not the most...
  22. nvsmom
    You know your stuff. I'm sure you'll find answers. The family situation is tough. There have been a number of people who have had a yough time with an ex-spouse following their child's diet. It's a real shame when a parent won't make the effort! If the doctor claims your 5 year old has NCGI (non-celiac gluten intolerance), be aware that the DGP...
  23. nvsmom
    I agree. Symptoms can last days and days from one exposure to gluten. It could be another food causing the problem, but my guess would be a one-time glutening. I hope you feel better soon.
  24. nvsmom
    In my opinion, you test results show celiac disease, especially since you have symptoms and a family history. Some people do test positive in the IgG based tests rather than the more typical IgA based tests even when they have a normal total serum IgA. It's not the majority but it is not a small minority by any means. If you look around the pre-diagnosis...
  25. nvsmom
    I think most people notice some symptom improvement within days, like bloating or stomach aches, but other symptoms may need weeks, months (most common) or years to get better. Symptoms like nerve pain, ataxia, or cognitive issues seem to take the longest to improve. Problems like D or C seem to take a few months to improve. It really varies from person to...
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